It's been almost six months since I did an update on Patrick's progression. There is always a sense of sadness for me with these posts, because I look at the prior "How's Patrick Doing" and consider what has changed. It's my own FRS (Functional Rating Score) and unless I completely bury my head in the sand I must admit that there has been a decline.
Interestingly I'm going to start with a health issue that is not ALS related, but resulted in Patrick being in the hospital for the past week. This will be a two parter - the first part is about Patrick's current health events and the second, will chronicle his ALS progression since January.
Drug Reactions
Patrick developed a urinary tract infection about two weeks ago. The infection came on quick and the doctor prescribed Bactrim which is typical for these types of infections. The prescription worked well for the first couple of days, the symptoms associated with the infection declined and he felt better. But the third day into the medication he developed a very high fever, headache, chills - just to name a few ailments. Frankly, he was miserable. I contacted the doctor who felt it was likely the infection was just running its course, but to come into his office and have it checked out. We made an appointment for the following day and hoped he would start feeling better.
Unfortunately, the next day he felt worse. So the question comes up, do we go to the emergency room or go to the doctor's appointment? Well, I chose the latter (not sure if that was the "right" decision or not frankly) the physician's assistant didn't really know what to make of his symptoms and she said that doctors can no longer directly admit into the hospital, so we'd have to either ride it out or go to the emergency room. We opted for the emergency room, but stopped by the house to pick up some things (my experience is you spend a lot of time waiting, at the ER). However, when we got home, Patrick was barely mobile and we wound up calling 911 and the ambulance took him to the hospital - which probably got him in quicker, not really sure.
When the ambulance arrived at the house he had a fever of 104, he was completely exhausted and showing signs of dehydration. So they rushed him over to Mercy San Juan Hospital. They got him on fluids right away, but they could not determine why he was so ill. The doctor told us immediately that he would be admitted and they were considering the possibility that he was having an appendicitis.
Patrick spent six days at Mercy San Juan while the symptoms ran their course; he went from fevers, to chills, to a head to toe rash, to sore throat and breathing difficulties. If you read "Dr. Google" you'll see the list of symptoms for extreme reactions to Sulfa drugs, Patrick got them all! As I write this he is still covered over most of his body with a horrible rash. He is a little slower than before but starting to bounce back. Gratefully his sense of humor and calm demeanor never left him.
He couldn't recall ever taking a sulfa based antibiotic, in the past he had been on penicillin derived drugs so this was his first (AND LAST) time.
ALS and Illness
A severe drug reaction is awful for anyone but for someone with ALS it causes a multitude of problems. There is a level of tiredness that all ALS patient's have, the body is always working, so they are constantly burning calories. Most ALS patients I know, take naps during the day due to their exhaustion level. We all know how awful we feel when we're sick and exhausted. Now add ALS to the equation and you understand how utterly zapped Patrick felt. This is still challenging, and as I write this, he sleeps.
His mobility issues were dramatically impacted, he went from walking with a walker to barely able to stand. Getting to and from the bathroom became tremendous battles. It's amazing how far the bathroom looks when you are having difficulty moving. The weakness in his hands and arms was very significant. He was barely able to lift his arms, which when your whole body itches, is a tremendous source of frustration. The movement in his legs has returned but his hands and arms are still recovering.
Of course, the scariest symptom was the effect on breathing. We all have to breath and with ALS the diaphragm is already compromised so adding an illness that is weakening your breathing can make things life threatening quickly. Fortunately, at this point Patrick has not developed the breathing problems associated with ALS so although it was scary it wasn't too severe. We both ponder what the outcome would have been had his breathing already been comprised (I think I'll just be grateful that wasn't the case and not dwell on it too much).
Hospitals, Nurses and Staff
Mercy San Juan Hospital is an interesting place. It's an old hospital that was renovated with a new section attached. The layout is kind of funky, with only one entrance in the new section where you have to work your way through a maze to find the right bank of elevators to the old section, which is where Patrick's room was. I knew Patrick had been there too long when I no longer made the wrong turns and found a quicker exit to the parking garage. The first night we were there I set off an alarm by opening an emergency door - yeah, I high tailed it out of the area and played dumb... don't worry, no one was hurt by me being lost and wandering around the building.
The staff at Mercy San Juan were extremely nice (minus one night nurse that Patrick called Nurse Ratchett). It's interesting that even in a hospital environment I found myself having to explain to staff about ALS. It is a rare disease and frankly ALS patients don't wind up in the hospital all that much - there is no treatment so it's only when they suffer a fall or have serious breathing issues that they head to the ER. It's a little disconcerting that I seemed to know more about the disease than the medical professionals. At one point a nurse kept trying to hand Patrick items and I had to tell her "he can't take that from you." - She was very understanding after, but in that moment it seemed a little strange to me.
I was worried when I wasn't there that the call button would move under the covers and he couldn't reach it. I wound up feeding it through his sleeve to keep it near his hand. I think Patrick was the one that relaxed me a bit, he said, "Really what is the worst that could happen when you're not here - heck I'm in a hospital!" Overall, truly the staff was amazing, thoughtful, funny and really smart when it came to moving him around. I learned quite a bit from just watching them.
Shared Hospital Rooms
Patrick had the misfortune of being placed in a shared hospital room initially. Those of you who haven't had the experience of a shared hospital room - basically, you're separated by a curtain so you hear and witness everything happening to your roommate, as well as he witnesses all of your activities (private and otherwise). The first night, his roommate kept the television on 24 hours and because he had limited hearing, it was on loud. The nurses were kind enough to get Patrick a pair of earplugs.
The second day Patrick got a new roommate, a gentleman (I use that term loosely) that after hearing his rantings, swearing and harassment of the staff, desperately wanted pain medications that he ran out of at home. He was angry, very angry at everything and everyone. Patrick and I listened to him for the better part of a day, he ranted when people were in the room and when they left the room. He required oxygen and had his wife sneak him outside to have a cigarette. That was one of the biggest disagreements with hospital staff, apparently "you can blow up the whole hospital doing that." The head nurse at one point came down and told him to stop harassing the staff.
The "gentleman's" story unveiled before us, he was in the final stages of COPD and was given about six months to live. The doctors, nurses and social workers all encouraged him to be put on hospice care. Apparently, hospice has more liberal rules regarding pain medication whereas doctors are limited to prescribe only so many narcotics to a person in a month (if you think about it, it makes sense.) The interesting piece is that after all of this, the "gentleman" and his wife left the hospital refusing hospice. The reason stated was that his wife didn't want people in their home and he didn't want to not be taken to the ER. How people make their decisions are odd to me, but the doctor said "I'd like to see you somewhere other than the hospital, but I think I'll be seeing you again here." I suspect he's right.
Anyway, this experience made me think - Firstly, you have six months to live, how do you want to live it? Does dying give you the right to treat everyone with hate and anger? Secondly, I looked at my husband who is 25 years younger than this "gentleman" and has a right to feel "ripped off" and there he was his usual calm self - chatting with the nurses, bragging about his daughter earning the Girl Scout Gold Award and looking forward to heading home. Truly we all have choices...
Part 2 to come... "How is Patrick Doing? (recent illness aside)
Thursday, June 12, 2014
Friday, April 25, 2014
Notes on Life #5
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| Anthony's Favorite - Captain EO |
It's been a while since I chronicled our family's events so here goes...
Disneyland, the Mouse & Cars Land
We started the year with a trip to Disneyland with the kids and grandkids. Disneyland is most enjoyable when seen from the eyes of a child.The weather was perfect, crowds were small and the grandkids were super excited. Cars Land is absolutely my favorite Disney attraction, the amount of detail that went into creating this land is remarkable. Of course, after travelling Route 66, the funny nuansces that exist from the actual Route make me smile.
We stayed at the Grand Californian nearby allowing us to go in and out of the park as we liked. On the final night, Caitlin and Patrick sat out on the balcony watching the staff in California Adventure test the rollercoasters, bring in stock for the stores and reset the World of Color show from the holiday presentation to the regular production. They must have sat there for a couple hours. If ALS does anything it slows you down, but the appreciation of a given moment is great.
North Coast
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| Bug Eyes - At a Bug's Life Presentation |
North Coast
Patrick and I spent a wonderful four days on the coast near Gulala. We rented a beautiful house that had 180 degree views of the coast. There is nothing like the clear night sky, and the sound of the waves rolling in to give you peace and relaxation. Except for one dinner at a nearby BBQ restaurant, we spent the entire time simply watching the waves. If you'd like a recommendation for a vacation home on the beach - drop me a note, the owner is incredibly nice and the views are amazing. A big thank you to the Blue Shield group - this is where we opted to use the gift cards you gave us!
When Patrick and I were first married and generally broke, Gualala was a beautiful and inexpensive place to stay -- we often stayed at the Gualala Hotel which has been there for years and has a lot of charm (it's for sale now, if anyone's interested...) Anyway, Gualala is as beautiful as ever, although not quite as inexpensive.
Christian is a Spider
Christian had his first experience in theatre this past month. He played a spider in the Alice in Wonderland Jr. play at Roseville Theater Arts Academy. He was the star of the play, well at least from a grandma's perspective. A good friend, Liza Bennett, created his spider costume. The costume was amazing with spider legs that moved as his arms moved. As the day of the play drew closer he was very excited. I think just being part of the production was wonderful for him.
When Patrick and I were first married and generally broke, Gualala was a beautiful and inexpensive place to stay -- we often stayed at the Gualala Hotel which has been there for years and has a lot of charm (it's for sale now, if anyone's interested...) Anyway, Gualala is as beautiful as ever, although not quite as inexpensive.
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| Gualala Coast from the Rental Balcony |
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| Sunset |
Christian is a Spider
After the production he says to me, "grandma I'm retired." But a week later when I asked if he wanted to do the next production the answer was a resounding YES. So, he's come out of retirement to do, "Once Upon a Time." I understand he is part of the group singing "How much is that Doggy in the Window." So, in May we will be enjoying another evening of Christian the Star!
Roxie
The greatest low over the past few months is the diagnosis that Roxie, the family pooch, has cancer. Over the past couple months, she's just not seemed right and we took her into the vet a number of times. After she starting vomiting the vet did some extensive tests and found that she has cancer of the liver and spleen. There is not a lot they can do for dogs with cancer and frankly, Roxie really doesn't understand so we are making her comfortable with steriods, pain killers and antibiotics.
Roxie
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| Roxie |
Dogs are interesting creatures, even when they are obviously in pain, if you pat their head or show them even the smallest attention their tail will wag. They are content with such simple things. As I write this, Roxie lays at my feet, her belly is shaved from the ultra sound and she's thinner than before, but she seems, in this moment, content.
A funny Roxie note... I have to feed her about 8 pills a day... well she doesn't like pills so I've tried EVERYTHING to get her to take them. She's a clever girl, if you put it in food, somehow she'll find it and spit it out. Right now, I'm using hot dogs (she likes hot dogs) and it works pretty well but it may just be a matter of time before she figures out that I'm secretly drugging her and spits them out.
The Grandkids and New Additions
Breaking in the New Van
Things to Look Forward to...
San Francisco, April/May
The Grandkids and New Additions
In addition, to Christian the Bug, Sofia turned one-year old this past month. Her party was princess themed and she had a surprise visit from Belle herself. It seems like just yesterday she was born, she is a beautiful child, full of happiness and smiles and Patrick is her biggest fan.
The exciting news is that we are now expecting our fourth granddaughter in August. There are times I think I'm way too young for this grandparent thing, but I must admit they are funny and make life much richer.
Here are some pictures of the grandkids over the past few months...
Emotional versus Logical
This month we ordered Patrick's power wheel chair. These are quite different than the scooters you see around; they are custom made, expensive and have add ons (like buying a car). We worked with a company that is highly recommended by the ALS Association. They are quite knowledgeable about ALS and the challenges that accompany the disease. Of course, in addition to the power wheelchair we are buying a van to accommodate the chair and ramps for our house.
These are probably the hardest emotional journeys for me. I'm adaptable, but my immediate feeling is one of being overwhelmed. So, you have these big decisions to make and they are important logically, but completely emotionally charged. Although I've never really enjoyed buying a new car, it was always kind of fun to check out the new car, drive it around and decide what options you want. I'm afraid it just isn't as fun when you're buying a disability van. I wish it was, but it isn't.
On a positive note, we did find a van, ordered the power wheelchair and got the ramp situation taken care of in our house. So, all is well that ends well or so they say...
DNA & Genealogy
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| The Force is Strong with these ones... |
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| Great Grandma, Anthony & Christian coloring Easter eggs |
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| Sofia's 1st Birthday |
This month we ordered Patrick's power wheel chair. These are quite different than the scooters you see around; they are custom made, expensive and have add ons (like buying a car). We worked with a company that is highly recommended by the ALS Association. They are quite knowledgeable about ALS and the challenges that accompany the disease. Of course, in addition to the power wheelchair we are buying a van to accommodate the chair and ramps for our house.
These are probably the hardest emotional journeys for me. I'm adaptable, but my immediate feeling is one of being overwhelmed. So, you have these big decisions to make and they are important logically, but completely emotionally charged. Although I've never really enjoyed buying a new car, it was always kind of fun to check out the new car, drive it around and decide what options you want. I'm afraid it just isn't as fun when you're buying a disability van. I wish it was, but it isn't.
On a positive note, we did find a van, ordered the power wheelchair and got the ramp situation taken care of in our house. So, all is well that ends well or so they say...
DNA & Genealogy
My DNA information came through and I'm happy to report I'm not an alien from outer space. Instead I'm mostly British. The surprise is that I'm also Irish - since I've done the genealogy extensively on my father's side, this was a surprise. So, I know that my mother's biological parents were likely Irish. I must admit it's renewed my curiousity on my mother's side so I'm digging around a little bit through the DNA matches on Ancestry.
Breaking in the New Van
Our new van will be taken on our next trip to Denver, Colorado to visit Patrick's family and see some of the places in Kansas and Colorado that the Timmons' Family migrated to in the 1800's. The family bible is actually at a Kansas Historical Society in Lecompton so we'll get a glance at it. Should be an interesting trip.
I hope you are enjoying this lovely spring weather and all is well with you and yours.
Things to Look Forward to...
San Francisco, April/May
Genealogy Timmons Trip, June
New Baby Girl - August
Saturday, March 15, 2014
Finding the Past & Considering the Future
These last couple months, Patrick and I have spent a considerable amount of time researching the past, managing the present and contemplating the future. For us, I think the things that bring the most comfort are areas in which we can take control. With ALS, you don't have a lot of control - instead you are simply adjusting to the constant change. So we are taking control wherever it presents itself and finding comfort in knowing that we are still "the masters of our own destiny."
Traveling Back to the Past
Patrick and I have spent quite a bit of time working on our family genealogies. We subscribe to Ancestry.com so we've started the monumental task of entering and researching our family trees. Patrick has always been interested in his family tree and began research and compiling information on his family years ago. I've never had near as much interest as Patrick and perhaps it's the death of my father but I seem to be all engaged in the family genealogy project of late. I think who we are is based quite a bit on where we come from and who came before us - so it's been interesting discovering where my ancestors came from and who they were.
Included in Patrick's information is a family bible, as well as countless photos & paperwork that he's collected over the years. At one point Patrick provided information to Alvy Ray Smith (one of the founder's of Pixar & apparently a distant cousin) on a book Alvy was working. Alvy researched one of Patrick's family lines, the Durands, all the way back to the 1600s. He published a book and sent Patrick a copy that we are finally getting entered into his family tree. He has some interesting folks in his tree, like Jacob Antrim Timmons who performed in a traveling show as Buffalo Bill.
For my family it's a bit more complicated, although I have a few documents given to me by various folks I really had little information. So, I set out asking folks for information. Kristina (whom I've always thought of as an Aunt, but who is really "the wife of my 1st cousin, once removed") provided me with a letter from my Great Great Grandfather Henry Sanford to my Great Grandmother Erma Sanford - circa 1924. In the letter, Henry Sanford says to Erma "the future of this history will depend on you." Additionally, my mom provided a bunch of information, photos and articles on the family. My mom has an incredible memory for these things.
Now I should point out that one of my challenges is my mom's family. My mom was adopted as a baby and has little information on the adoption. My sister and I have always been curious about my mom's biological family, but my mom to my knowledge never expressed any interest. She was very attached to her adoptive parents and brother. My dilemma is so, how does one pursue family genealogy in the case of adoption, my first thought was that the biological family was really "how I came to be." so I put most of my genealogy effort into my father's side of the family. But that's only 50% of my lineage so it did nag at me.
So, I've been thinking really "what is family" and a story by Dr. Seuss that I use to read to Caitlin came to mind, "Horton Hatches the Egg" if you haven't read it, it's worth a read. Basically, Horton winds up sitting on a bird's egg for seasons until it hatches and it comes out with some bird and elephant qualities. After spending time with my mom this past week, I realized, she doesn't need to know about her biological family because - that's not her family. Her family was Gilbert and Hattie Chandler who adopted her as a baby, raised her and loved her all those years. So, I can't say my curiosity is gone, but my family tree consists of my dad's family (the Johnson Family) and my mom's family (the Chandler Family).
DNA Testing
For Christmas this year, as a gift to Patrick, I had his DNA tested through Ancestry.com. The test is two fold - it provides information on your ethnicity - for instance Patrick is 52% Great Britain, 22% Western European, 18% Irish, 5% Scandinavian and 3% Other. Ancestry provides some migration information and a map of what these areas are considered. Secondly, Ancestry will provide links to other Ancestry folks that have had their DNA done and are considered a "match" with you - they even go so far as to say how close a relative the person is - 2nd cousin, 4-6th cousin , etc. Ancestry then tries to match people in your tree against their tree. It's all quite interesting. So you don't worry you can control your information on how little or how much you reveal to other DNA test takers.
I found it all so interesting, I decided to have my DNA tested also - the results are not back so I can't share with you my information. With my mom being adopted I figure the sky's the limit. On my dad side I expect Swedish and Great Britain - but hey "proof is in the pudding." Every day I log on to Ancestry just to see if by chance my DNA test is completed... it's taking forever (either that or I have no patience). Patrick says it's taking longer than his because they have never dealt with alien DNA before...
Over the past month, Patrick and I worked with an attorney to put together our will and trust documents. The strange thing about doing this is that it actually feels good to complete these items. I think its one of the most therapeutic things I've done of late. With ALS, there are very few things you can control - certainly not the disease, so there is a sense of strength in taking control over end of life decisions. It was a learning experience for me and I recommend that everyone let the important folks in their lives know what their wishes are - don't assume they know.
For me, I've always believed that funerals and burials are for the living and whatever my children needed at my passing was ok by me. Frankly, I kind of liked the idea of my ashes being scattered, some place pretty. It's funny how another person can change your mind though... while all of these decisions were going on, Patrick and I had some important discussions and he reminded me of a number of truths. First, although I don't seem to want a grave site, I always visit my family graves in Susanville when I go up there; I lay some flowers and chat a little to my grandparents, great grandmother and now my dad. I find it peaceful, and I do somehow feel their presence. Secondly, when you're doing family genealogy one of the things you look for are your ancestor's grave sites and headstones - they provide valuable information into your ancestor's history. Lastly, and most important to me was that Patrick wanted us to be buried together.
So... we are taking on the task of purchasing burial plots, selecting a headstone and deciding on funeral arrangements. As strange as this may seem, I've found a lot of comfort in this, I don't want my children to wonder whether they did right by me or add stress to an already difficult time. I've decided in addition to a headstone we will have a bench (there are some real nice ones) to sit by our grave. I figure our descendants can sit and chat with us long after we've passed.
I hope all is well with you and yours.
Traveling Back to the Past
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| Jacob Antrim Timmons - Great Grandfather |
Included in Patrick's information is a family bible, as well as countless photos & paperwork that he's collected over the years. At one point Patrick provided information to Alvy Ray Smith (one of the founder's of Pixar & apparently a distant cousin) on a book Alvy was working. Alvy researched one of Patrick's family lines, the Durands, all the way back to the 1600s. He published a book and sent Patrick a copy that we are finally getting entered into his family tree. He has some interesting folks in his tree, like Jacob Antrim Timmons who performed in a traveling show as Buffalo Bill.
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| Henry Sanford & Carl Ivan Johnson (Great Great Grandfather & Great Uncle) |
Now I should point out that one of my challenges is my mom's family. My mom was adopted as a baby and has little information on the adoption. My sister and I have always been curious about my mom's biological family, but my mom to my knowledge never expressed any interest. She was very attached to her adoptive parents and brother. My dilemma is so, how does one pursue family genealogy in the case of adoption, my first thought was that the biological family was really "how I came to be." so I put most of my genealogy effort into my father's side of the family. But that's only 50% of my lineage so it did nag at me.
So, I've been thinking really "what is family" and a story by Dr. Seuss that I use to read to Caitlin came to mind, "Horton Hatches the Egg" if you haven't read it, it's worth a read. Basically, Horton winds up sitting on a bird's egg for seasons until it hatches and it comes out with some bird and elephant qualities. After spending time with my mom this past week, I realized, she doesn't need to know about her biological family because - that's not her family. Her family was Gilbert and Hattie Chandler who adopted her as a baby, raised her and loved her all those years. So, I can't say my curiosity is gone, but my family tree consists of my dad's family (the Johnson Family) and my mom's family (the Chandler Family).
DNA Testing
For Christmas this year, as a gift to Patrick, I had his DNA tested through Ancestry.com. The test is two fold - it provides information on your ethnicity - for instance Patrick is 52% Great Britain, 22% Western European, 18% Irish, 5% Scandinavian and 3% Other. Ancestry provides some migration information and a map of what these areas are considered. Secondly, Ancestry will provide links to other Ancestry folks that have had their DNA done and are considered a "match" with you - they even go so far as to say how close a relative the person is - 2nd cousin, 4-6th cousin , etc. Ancestry then tries to match people in your tree against their tree. It's all quite interesting. So you don't worry you can control your information on how little or how much you reveal to other DNA test takers.
I found it all so interesting, I decided to have my DNA tested also - the results are not back so I can't share with you my information. With my mom being adopted I figure the sky's the limit. On my dad side I expect Swedish and Great Britain - but hey "proof is in the pudding." Every day I log on to Ancestry just to see if by chance my DNA test is completed... it's taking forever (either that or I have no patience). Patrick says it's taking longer than his because they have never dealt with alien DNA before...
Burials, Wills and Funerals
When my dad died in December, he left no instructions for his burial or funeral arrangements, which made it difficult to know what the best plan was for dad. It's not a period of time where you are fully engaged in planning or are in your "right" mind -- instead you are in the stage of grieving. So, we made the decisions we thought were best, based on various factors. My hope is that we did right by my dad, he certainly deserved it. This feeling of not knowing was a nudge to me to start making plans of my own as I don't want to add to the stress of those left behind.
Over the past month, Patrick and I worked with an attorney to put together our will and trust documents. The strange thing about doing this is that it actually feels good to complete these items. I think its one of the most therapeutic things I've done of late. With ALS, there are very few things you can control - certainly not the disease, so there is a sense of strength in taking control over end of life decisions. It was a learning experience for me and I recommend that everyone let the important folks in their lives know what their wishes are - don't assume they know.
For me, I've always believed that funerals and burials are for the living and whatever my children needed at my passing was ok by me. Frankly, I kind of liked the idea of my ashes being scattered, some place pretty. It's funny how another person can change your mind though... while all of these decisions were going on, Patrick and I had some important discussions and he reminded me of a number of truths. First, although I don't seem to want a grave site, I always visit my family graves in Susanville when I go up there; I lay some flowers and chat a little to my grandparents, great grandmother and now my dad. I find it peaceful, and I do somehow feel their presence. Secondly, when you're doing family genealogy one of the things you look for are your ancestor's grave sites and headstones - they provide valuable information into your ancestor's history. Lastly, and most important to me was that Patrick wanted us to be buried together.
So... we are taking on the task of purchasing burial plots, selecting a headstone and deciding on funeral arrangements. As strange as this may seem, I've found a lot of comfort in this, I don't want my children to wonder whether they did right by me or add stress to an already difficult time. I've decided in addition to a headstone we will have a bench (there are some real nice ones) to sit by our grave. I figure our descendants can sit and chat with us long after we've passed.
I hope all is well with you and yours.
Monday, February 17, 2014
Notes from a Caregiver #1
Throughout the year, I've written about the life of a person with ALS. As I've often said, this is done second hand from the perspective of a daily observer and caregiver, not as a patient. But this blog is different, because I write from my personal experience as a caregiver. This blog itself has been a work in progress for a few months. I've written, rewritten and likely over thought the words. My concern was two-fold, I didn't want to sugar coat it and I didn't want to hurt Patrick's feelings. So this is my disclaimer, this is my perspective as a caregiver and its jaded by my personal situation, beliefs and experiences.
As I've described before, ALS is a thief and the journey is one of perpetual loss. As the disease progresses, the journey of a caregiver changes along with it. Initially, when Patrick received his diagnosis a year ago, Patrick required very little help from me - a button here, or a shoe tied there. Since then, I've taken on more responsibilities and roles.
There are two challenges for an ALS caregiver; first the loss of having a second person help with chores and tasks. As the disease progresses, tasks/chores that the ALS person did, they are no longer able to do, adding to your daily to do list. Secondly, there are new responsibilities added to directly care for the ALS person.
This has been a year of learning, settling into the role of caregiver, managing perpetual changes and creating balance and support. These are my thoughts as a caregiver...
I am not alone...
There are many people playing the role of caregivers, in America, statistics give the number at 65 million (according to caregivers.org). Most are family members taking on the role due to an illness, disability or age of a family member or close friend. It's a big responsibility and not an easy role. For me, it's not a role I would seek and there are moments that I get tired of the responsibility and constant tasks to be completed. In this respect, I'm probably not the ideal caregiver. But if you're wondering from that comment why take on the role - well that's an easy one, because I love my husband and have spent the past 30 years with him. Remember that vow, "in sickness and in health," I sure didn't think ALS was part of the equation, but you don't get to pick the challenges presented, we simply must chose how we respond to them.
There are things that continue to sustain me through this journey. First, I'm pretty comfortable with a live in the moment perspective. Second, I have a wonderful family, good friends, ALS Support groups, and acquaintances that provide support. Lastly, but certainly not least, Patrick's continual gift of humor and strength.
Life in the Moment
Living in the moment has always been more comfortable for me than being a planner or knowing where everything is going in life. This perspective, has not always been beneficial, but as an ALS caregiver it does tend to make life easier. I don't dwell on the past or plan out the next five years of my life - I never really have. In general I just tend to "go with the flow." Now, like I said, in the real world this isn't always the best trait. But as an ALS caregiver it means I don't look at the next five years and require a plan. From a psychological perspective - I think this is what keeps me sane.
Having said that, a piece of advice was given by a caregiver in support group. He said whatever you do stay ahead of the game, don't make decisions because you need something today, plan for things months in advance. So this is my greatest challenge, as things progress you have to put things in place - an example is the lift we installed; you don't want to decide to get a lift on the day that the ALS patient can't take the stairs. Fortunately, for me, I married a planner and even though it must be hard to look out, he tends to be the one to say "it's time to consider _________ (blank)."
Right now we are looking at purchasing a handicap van so Patrick is researching, asking fellow patients and looking at local providers to determine what is the best choice. The need for the van is months away, and it's painful for me - this is where the living in the moment doesn't work - it is hard for me to look and plan for the future.
Friends and Acquaintances
I always knew I was blessed with our two daughters, Caitlin and Corrinne. But now, I really know how blessed I am and that they are a constant source of strength for me. Caitlin is our 18 year old daughter, most people at her age are worried about college, friends, jobs etc. for Caitlin she has all these worries and the added stress that her dad has ALS. She often makes his lunch, puts on his shoes and helps him up. She hangs out with dad when I have lunch or dinner with friends - she makes my life easier and without her, the day to day activities would be quite a bit more difficult.
Corrinne also helps if I need to go out and she married a great guy, Justin, who over the past few months has fixed my fence, changed my tire, moved furniture and added a step to the Ford Explorer (there are many other things but these are the ones that come to mind). I really can't imagine what it would be like without family, so for this I'm grateful.
Additionally, I'm thankful to my sister Denise, who I talk with on the phone - a little more than I use to (ah, come on Neece you know its true). I guess I need to stop saying, you were a mistake - my mother would say a "blessing," but as kids, I told her she was a mistake. - Hey what are sisters for???
There is truth to the statement that "when bad things happen, you find out who your friends are. I don't know how someone could be a caregiver and not have friends and people that support them. There are people that I will always be grateful for knowing and make my life easier.
Here are some of my stories over the past year...
There are some really wonderful people that Patrick worked with at Blue Shield - far too many to list here. But since this is about the life a caregiver I'll share with you a story of one of his co-workers that I'm very grateful to know. You must bare in mind that before the ALS diagnosis I had met very few of Patrick's co-workers - the opportunity just didn't present itself. Well, last summer I got a call from Bren Lee (Vaughn's wife) - I knew from Patrick that Bren was going through chemotherapy for Breast Cancer and was stage 4 (I'm not very cancer knowledgeable, but I understand that stage 4 is not good). Anyway, Bren called me because she said "I know about Patrick's diagnosis and I've read your blog and I really want to do something for you." I didn't know what to say to Bren frankly, I was really awestruck that someone with their own life challenges wanted to "do something for us."
Well, this has led to a great friendship - I don't believe ALS is a blessing (believe it or not I've heard that) but I will say that there are people I've met in the journey that I'm happy to know. In December when Bren heard that my father had passed she called around to figure out when and where the funeral was so she could send flowers (they were quite a surprise, and in addition to myself, my mother was very touched).
As many of you know I'm a 46-year old Girl Scout - proud of it too - yes, sometimes I wear a uniform, I know how to start a fire and absolutely, I can fix you up with some cookies. There is a group of ladies (all old Girl Scout Leaders) that I've been friends with for many years. We've roasted s'mores, run weekend camps, put together events and managed cookie season together. When I sent them news of Patrick's diagnosis, I received some of the most heartwarming responses - how can I help?, Can I make you some dinners?, Call me if you need me... It really made me think what do I need? So, I told them what I'd really like is a monthly dinner. Now a year later it's been such a huge source of strength for me. Generally, it's wine, dinner and good conversation and it's an evening I look forward to every month. The ladies named the group "The Sisterhood of the Old Goats." - Well my old goat sisters - you're the best!
I walked Roxie, our friendly Lab, the other day down to Starbucks. When I arrived there were few outside seats and the "dog area" table was being used. Two ladies chatting at a table said - "we'll watch your dog while you get your beverage." - Since Roxie is SUPER friendly I figured by the time I was back they would be exhausted by the ol' girl, but upon my return they seemed to be enjoying her company. I looked around to find a table and they quickly invited me to sit with them. It was such an act of kindness and I really enjoyed the 30 minutes talking about dogs, the weather and nothing in particular. To these two ladies I say thanks - I don't know your names but I appreciated the moment.
There are so many good people that impact my life - friends that drop cookies and ninjas (thanks Eve), folks that often check in to see how I'm doing, and emails and texts from friends that make me feel connected. It makes such an impact on my psyche - I'm not always the best responder via text or email but always know that I appreciate it!
Counseling and Support Groups
The ALS Association provides a monthly support group for caregivers and ALS patients. I see them as fellow travelers - their situations are not exactly the same as ours but they understand the ALS diagnosis. It's such a unique journey and talking with others that know what it's like who share similar experiences has been beneficial on many levels. Recently, the Association also started a new group for ALS caregivers and patients to deal with loss and grief. I wasn't sure about attending this group initially and I went questioning whether I would continue. As it turned out it was a very moving experience, and it provided me with emotional support with individuals who are living with someone or are ALS patients.
In addition to the support received from the ALS support groups, over the past year I started seeing a counselor and for the first time got a massage. I understand that counseling and support groups are not for everyone, but for me it has helped me with emotional and practical issues in dealing with Patrick's ALS diagnosis. It's incredibly painful to watch someone you love progress with the ALS disease and difficult to manage the emotional ups and downs of a constantly changing life.
Patrick
Patrick continues to amaze me in how he manages the day. He doesn't whine, complain or get angry - and frankly he probably has every right. He has his moments of frustration but they are few. He continues to provide me with a tremendous source of strength. I've always been a little "high strung" and over the years he's tolerated many of my crazy ideas, moody behavior and occasional rants (no I'm not always easy to live with). I am grateful that he still has a great sense of humor, and still seems to enjoy my company.
Finding Grace in the Day
As I've said before the ALS journey is entirely personal, this is true for the patient and the caregiver. How I manage the day is still evolving but I'm grateful for the people in my life that make it easier and richer. In addition to all these things that make life easier, I find writing these blogs therapeutic. Being able to keep a journal has been a great way to chronicle our life at this time and keep in touch with family and friends who want to know how we are doing.
It's been a year of change learning and settling into the role of caregiver. I'm grateful to all the wonderful people that share in our journey and hope you all find grace in the day!
As I've described before, ALS is a thief and the journey is one of perpetual loss. As the disease progresses, the journey of a caregiver changes along with it. Initially, when Patrick received his diagnosis a year ago, Patrick required very little help from me - a button here, or a shoe tied there. Since then, I've taken on more responsibilities and roles.
There are two challenges for an ALS caregiver; first the loss of having a second person help with chores and tasks. As the disease progresses, tasks/chores that the ALS person did, they are no longer able to do, adding to your daily to do list. Secondly, there are new responsibilities added to directly care for the ALS person.
This has been a year of learning, settling into the role of caregiver, managing perpetual changes and creating balance and support. These are my thoughts as a caregiver...
I am not alone...
There are many people playing the role of caregivers, in America, statistics give the number at 65 million (according to caregivers.org). Most are family members taking on the role due to an illness, disability or age of a family member or close friend. It's a big responsibility and not an easy role. For me, it's not a role I would seek and there are moments that I get tired of the responsibility and constant tasks to be completed. In this respect, I'm probably not the ideal caregiver. But if you're wondering from that comment why take on the role - well that's an easy one, because I love my husband and have spent the past 30 years with him. Remember that vow, "in sickness and in health," I sure didn't think ALS was part of the equation, but you don't get to pick the challenges presented, we simply must chose how we respond to them.
There are things that continue to sustain me through this journey. First, I'm pretty comfortable with a live in the moment perspective. Second, I have a wonderful family, good friends, ALS Support groups, and acquaintances that provide support. Lastly, but certainly not least, Patrick's continual gift of humor and strength.
Life in the Moment
Living in the moment has always been more comfortable for me than being a planner or knowing where everything is going in life. This perspective, has not always been beneficial, but as an ALS caregiver it does tend to make life easier. I don't dwell on the past or plan out the next five years of my life - I never really have. In general I just tend to "go with the flow." Now, like I said, in the real world this isn't always the best trait. But as an ALS caregiver it means I don't look at the next five years and require a plan. From a psychological perspective - I think this is what keeps me sane.
Having said that, a piece of advice was given by a caregiver in support group. He said whatever you do stay ahead of the game, don't make decisions because you need something today, plan for things months in advance. So this is my greatest challenge, as things progress you have to put things in place - an example is the lift we installed; you don't want to decide to get a lift on the day that the ALS patient can't take the stairs. Fortunately, for me, I married a planner and even though it must be hard to look out, he tends to be the one to say "it's time to consider _________ (blank)."
Right now we are looking at purchasing a handicap van so Patrick is researching, asking fellow patients and looking at local providers to determine what is the best choice. The need for the van is months away, and it's painful for me - this is where the living in the moment doesn't work - it is hard for me to look and plan for the future.
Friends and Acquaintances
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| Caitlin:) |
Corrinne also helps if I need to go out and she married a great guy, Justin, who over the past few months has fixed my fence, changed my tire, moved furniture and added a step to the Ford Explorer (there are many other things but these are the ones that come to mind). I really can't imagine what it would be like without family, so for this I'm grateful.
 |
| Corrinne and Justin |
Additionally, I'm thankful to my sister Denise, who I talk with on the phone - a little more than I use to (ah, come on Neece you know its true). I guess I need to stop saying, you were a mistake - my mother would say a "blessing," but as kids, I told her she was a mistake. - Hey what are sisters for???
There is truth to the statement that "when bad things happen, you find out who your friends are. I don't know how someone could be a caregiver and not have friends and people that support them. There are people that I will always be grateful for knowing and make my life easier.
Here are some of my stories over the past year...
There are some really wonderful people that Patrick worked with at Blue Shield - far too many to list here. But since this is about the life a caregiver I'll share with you a story of one of his co-workers that I'm very grateful to know. You must bare in mind that before the ALS diagnosis I had met very few of Patrick's co-workers - the opportunity just didn't present itself. Well, last summer I got a call from Bren Lee (Vaughn's wife) - I knew from Patrick that Bren was going through chemotherapy for Breast Cancer and was stage 4 (I'm not very cancer knowledgeable, but I understand that stage 4 is not good). Anyway, Bren called me because she said "I know about Patrick's diagnosis and I've read your blog and I really want to do something for you." I didn't know what to say to Bren frankly, I was really awestruck that someone with their own life challenges wanted to "do something for us."
Well, this has led to a great friendship - I don't believe ALS is a blessing (believe it or not I've heard that) but I will say that there are people I've met in the journey that I'm happy to know. In December when Bren heard that my father had passed she called around to figure out when and where the funeral was so she could send flowers (they were quite a surprise, and in addition to myself, my mother was very touched).
 |
| Vaughn, Bren, Me & Patrick |
 |
| Izzie, Charlotte & Deb: some of My Old Goat Buddies |
There are so many good people that impact my life - friends that drop cookies and ninjas (thanks Eve), folks that often check in to see how I'm doing, and emails and texts from friends that make me feel connected. It makes such an impact on my psyche - I'm not always the best responder via text or email but always know that I appreciate it!
Counseling and Support Groups
The ALS Association provides a monthly support group for caregivers and ALS patients. I see them as fellow travelers - their situations are not exactly the same as ours but they understand the ALS diagnosis. It's such a unique journey and talking with others that know what it's like who share similar experiences has been beneficial on many levels. Recently, the Association also started a new group for ALS caregivers and patients to deal with loss and grief. I wasn't sure about attending this group initially and I went questioning whether I would continue. As it turned out it was a very moving experience, and it provided me with emotional support with individuals who are living with someone or are ALS patients.
In addition to the support received from the ALS support groups, over the past year I started seeing a counselor and for the first time got a massage. I understand that counseling and support groups are not for everyone, but for me it has helped me with emotional and practical issues in dealing with Patrick's ALS diagnosis. It's incredibly painful to watch someone you love progress with the ALS disease and difficult to manage the emotional ups and downs of a constantly changing life.
PatrickPatrick continues to amaze me in how he manages the day. He doesn't whine, complain or get angry - and frankly he probably has every right. He has his moments of frustration but they are few. He continues to provide me with a tremendous source of strength. I've always been a little "high strung" and over the years he's tolerated many of my crazy ideas, moody behavior and occasional rants (no I'm not always easy to live with). I am grateful that he still has a great sense of humor, and still seems to enjoy my company.
Finding Grace in the Day
As I've said before the ALS journey is entirely personal, this is true for the patient and the caregiver. How I manage the day is still evolving but I'm grateful for the people in my life that make it easier and richer. In addition to all these things that make life easier, I find writing these blogs therapeutic. Being able to keep a journal has been a great way to chronicle our life at this time and keep in touch with family and friends who want to know how we are doing.
It's been a year of change learning and settling into the role of caregiver. I'm grateful to all the wonderful people that share in our journey and hope you all find grace in the day!
Wednesday, January 22, 2014
How's Patrick Doing #3
It's been about six months since I gave a Patrick update and probably long over due. I know friends and family are interested in how he's managing the disease and his status. ALS is a journey of loss and I'm constantly amazed at how Patrick faces the ALS challenges. It's not to say he's happy about it, no, but he rarely complains.
December marks a year since the diagnosis, and it's certainly been a year of change. I always wondered why people mark dates of sorrow. I've never done this in the past, but sadly I do now mark December, 2012 as the month we got the ALS diagnosis. So, I can't say why we do it, but we do remember anniversaries both good and bad. Last year, you probably wouldn't have even guessed there was anything amiss with Patrick just by seeing him, but time in ALS is not a friend and there has been progression over the past year.
Walking, Tremors and Balance
Probably the greatest change over the past six months is in walking. He continues to walk, but with care, concentration and the constant concern of falling. Falling is a problem for ALS patients, either while walking or transferring from one thing to another. We've been lucky (I'm knocking on wood right now) in the past few months because although we've had some very close calls (all being directed to soft surfaces), there have been no falls that required a trip to the ER. Yep, we try to guide the falls to the nearest chair, bed, couch etc.
I wish I understood and could explain the difficulties of walking - I'll I can say is that sometimes his legs don't do what he wants. I know this because he talks to them. Just so you don't think he's crazy they don't talk back, but generally they do start moving albeit slowly. Generally, once he gets going, he's ok, but the initial starting to stand and taking the first step is difficult.
Over the past few months he has developed tremors sporadically in his legs. He is unable to stop the tremors and they make standing difficult. Again, he speaks to them and eventually they stop with the shakes, but its disconcerting both for him and me. In addition to the tremors, his balance is off, so turning or pivoting is tough and generally he needs something to hold on to move in these directions.
Walkers, Scooters and Wheelchairs
It was a difficult decision for Patrick to start using equipment to help him move around, but he does use a walker at home and an electric scooter when we are out. The ALS Association lent both of these items to us from their loan closet and they've been quite helpful. The scooter can be taken apart and put in the back of our Ford Explorer which is handy - as I couldn't lift the entire thing. So, I've become pretty efficient at taking it apart and putting it back together.
The next big change in the upcoming months is a power wheelchair and van to accommodate it. This is a hard decision but we have to stay ahead of the game because the ordering process takes time from order to delivery. Power wheelchairs are custom made for the patient and run upwards of $25,000 - yeah, they are also expensive.
Adapting to Change
With the progression in ALS, there are constant changes taking place. Patrick's hands continue to be his weakest area and simple tasks are more challenging. Fortunately, he continues to be able to type on the computer and feed himself. We have adaptive silverware that makes eating easier and straws are quite handy. I'm sure I get looks at restaurants when I cut his food for him or when he drinks his coffee or beer from a straw. Honestly, two years ago if I'd have seen a woman cutting her husband's food, I wouldn't have understood and likely thought it odd. But, ALS is a painful teacher and I understand now more profoundly not to judge others quickly. Anyway, if you see someone cutting their spouse's food, they may not be an enabler, instead they may just be a caregiver adapting to change as it comes and taking care of their loved one.
Clinics, Doctors and Physical Therapists
We go to the ALS Clinic on a quarterly basis. The clinic is multidisciplinary providing the patient with a variety of specialists for managing the progression of the disease. These specialists include a neurologist, physical therapist, respiratory specialist, speech therapist, dietician and social worker. The appointments last about three hours and allow us to see everyone without the hassle of referrals and follow-up appointments.
Initially, having quarterly appointments was shocking to me, why wouldn't they see him more often with such a serious disease. But, truthfully although the clinic provides a valuable service to patients, there really is no need to be seen more than quarterly. Since the clinic manages symptoms and progression and doesn't offer a treatment, three months is a workable time frame between appointments.
Yes, I have a very mixed view of doctors because of this experience. As a child, I believed that doctor's could treat and cure any disease. In reality, they know very little about ALS and there is no "treatment". Currently, there is only one drug on the market that has shown to slow the progression of the disease by 10% (3 additional months), Rilutek. Patrick has been on this drug since his initial diagnosis in December, 2012.
The past couple months Patrick has been seeing a physical therapist, Matt, for an old injury prior to his ALS diagnosis. This is my first experience with physical therapy and it is a bright spot for Patrick because it's broadened his range of motion on his right side. There are limits to what physical therapy can do, but it certainly has proven to improve the area that was injured.
The Functional Rating Scale - Disease Progression
At each clinic appointment you meet with the various specialists. They spend their time mitigating symptoms, testing to determine progression, evaluating respiratory function, prescribing medications for spacisity, muscle cramping and other issues, and order medical devices as needed. The test for progression is extremely unscientific, it's a list of 12 questions with points assigned. These questions are asked at each appointment, a score is then determined and placed on a progression chart. Here is a link to the questions on the ALS Functional Rating Scale.
The test is very unscientific and many of these questions are quite subjective. I know for ALS patients and caregivers this scale can be a tremendous source of stress, I see it in Patrick on occasion. I'm not sure how I'd feel about having my physical decline put on a scale, but I guess at this point it is the only way they can measure the disease. I don't know much about cancer, but I guess they must measure tumors to determine their size changes, so perhaps this is similar.
ALS was first documented back in 1874 by French neurologist, Jean-Marie Charcot (http://dev.nsta.org/evwebs/2150/history.htm), it is truly sad that they still know so little about the disease. Another ALS patient jokingly said if ALS caused erectile dysfunction it would have been cured years ago. Not sure if this is true, but it does make you wonder.
The physical changes over the past six months have imposed their challenges for Patrick, but he continues to maintain a positive outlook each day.
I hope whatever life hands you that you find grace and happiness in the day!
December marks a year since the diagnosis, and it's certainly been a year of change. I always wondered why people mark dates of sorrow. I've never done this in the past, but sadly I do now mark December, 2012 as the month we got the ALS diagnosis. So, I can't say why we do it, but we do remember anniversaries both good and bad. Last year, you probably wouldn't have even guessed there was anything amiss with Patrick just by seeing him, but time in ALS is not a friend and there has been progression over the past year.
Walking, Tremors and Balance
Probably the greatest change over the past six months is in walking. He continues to walk, but with care, concentration and the constant concern of falling. Falling is a problem for ALS patients, either while walking or transferring from one thing to another. We've been lucky (I'm knocking on wood right now) in the past few months because although we've had some very close calls (all being directed to soft surfaces), there have been no falls that required a trip to the ER. Yep, we try to guide the falls to the nearest chair, bed, couch etc.
I wish I understood and could explain the difficulties of walking - I'll I can say is that sometimes his legs don't do what he wants. I know this because he talks to them. Just so you don't think he's crazy they don't talk back, but generally they do start moving albeit slowly. Generally, once he gets going, he's ok, but the initial starting to stand and taking the first step is difficult.
Over the past few months he has developed tremors sporadically in his legs. He is unable to stop the tremors and they make standing difficult. Again, he speaks to them and eventually they stop with the shakes, but its disconcerting both for him and me. In addition to the tremors, his balance is off, so turning or pivoting is tough and generally he needs something to hold on to move in these directions.
Walkers, Scooters and Wheelchairs
It was a difficult decision for Patrick to start using equipment to help him move around, but he does use a walker at home and an electric scooter when we are out. The ALS Association lent both of these items to us from their loan closet and they've been quite helpful. The scooter can be taken apart and put in the back of our Ford Explorer which is handy - as I couldn't lift the entire thing. So, I've become pretty efficient at taking it apart and putting it back together.
The next big change in the upcoming months is a power wheelchair and van to accommodate it. This is a hard decision but we have to stay ahead of the game because the ordering process takes time from order to delivery. Power wheelchairs are custom made for the patient and run upwards of $25,000 - yeah, they are also expensive.
Adapting to Change
With the progression in ALS, there are constant changes taking place. Patrick's hands continue to be his weakest area and simple tasks are more challenging. Fortunately, he continues to be able to type on the computer and feed himself. We have adaptive silverware that makes eating easier and straws are quite handy. I'm sure I get looks at restaurants when I cut his food for him or when he drinks his coffee or beer from a straw. Honestly, two years ago if I'd have seen a woman cutting her husband's food, I wouldn't have understood and likely thought it odd. But, ALS is a painful teacher and I understand now more profoundly not to judge others quickly. Anyway, if you see someone cutting their spouse's food, they may not be an enabler, instead they may just be a caregiver adapting to change as it comes and taking care of their loved one.
Clinics, Doctors and Physical Therapists
We go to the ALS Clinic on a quarterly basis. The clinic is multidisciplinary providing the patient with a variety of specialists for managing the progression of the disease. These specialists include a neurologist, physical therapist, respiratory specialist, speech therapist, dietician and social worker. The appointments last about three hours and allow us to see everyone without the hassle of referrals and follow-up appointments.
Initially, having quarterly appointments was shocking to me, why wouldn't they see him more often with such a serious disease. But, truthfully although the clinic provides a valuable service to patients, there really is no need to be seen more than quarterly. Since the clinic manages symptoms and progression and doesn't offer a treatment, three months is a workable time frame between appointments.
Yes, I have a very mixed view of doctors because of this experience. As a child, I believed that doctor's could treat and cure any disease. In reality, they know very little about ALS and there is no "treatment". Currently, there is only one drug on the market that has shown to slow the progression of the disease by 10% (3 additional months), Rilutek. Patrick has been on this drug since his initial diagnosis in December, 2012.
The past couple months Patrick has been seeing a physical therapist, Matt, for an old injury prior to his ALS diagnosis. This is my first experience with physical therapy and it is a bright spot for Patrick because it's broadened his range of motion on his right side. There are limits to what physical therapy can do, but it certainly has proven to improve the area that was injured.
The Functional Rating Scale - Disease Progression
At each clinic appointment you meet with the various specialists. They spend their time mitigating symptoms, testing to determine progression, evaluating respiratory function, prescribing medications for spacisity, muscle cramping and other issues, and order medical devices as needed. The test for progression is extremely unscientific, it's a list of 12 questions with points assigned. These questions are asked at each appointment, a score is then determined and placed on a progression chart. Here is a link to the questions on the ALS Functional Rating Scale.
The test is very unscientific and many of these questions are quite subjective. I know for ALS patients and caregivers this scale can be a tremendous source of stress, I see it in Patrick on occasion. I'm not sure how I'd feel about having my physical decline put on a scale, but I guess at this point it is the only way they can measure the disease. I don't know much about cancer, but I guess they must measure tumors to determine their size changes, so perhaps this is similar.
ALS was first documented back in 1874 by French neurologist, Jean-Marie Charcot (http://dev.nsta.org/evwebs/2150/history.htm), it is truly sad that they still know so little about the disease. Another ALS patient jokingly said if ALS caused erectile dysfunction it would have been cured years ago. Not sure if this is true, but it does make you wonder.
The physical changes over the past six months have imposed their challenges for Patrick, but he continues to maintain a positive outlook each day.
I hope whatever life hands you that you find grace and happiness in the day!
Wednesday, December 25, 2013
A Day in the Life
How do you fill your days? This is a question we receive often. On the spot, we both kind of look at each other and ponder "heck, what do we do??" There is no doubt that life has changed over the past year and Patrick's energy levels are not what they used to be, but the days still seem to be filled with quite a bit of activities. The mobility challenges do lessen what Patrick's able to do and although he doesn't jog every day, he does go out on his scooter with me and Roxie on occasion. We have to be careful with his energy, it's limited and he doesn't function well if he's tired. Christmas shopping for four hours about did him in this week, but to be fair, it tuckered Caitlin out too.
Here are some of the items that Patrick spends time on these days... (this is an aside from harassing the dog, being a backseat driver and checking out his Facebook page...)
ALS Association Board
Patrick was asked to serve on the Sacramento ALS Association Board in November by the Executive Director, Amy Sugimoto. We are big fans of the association that has proven to be such a resource for us. The association serves ALS patients and their families through support groups, education materials and a loan closet. Surprisingly, this is the first time they've placed patients on the Board of Directors. This decision will add a new perspective to the board and help to keep their focus on the patient. In addition to Patrick, Susan Catlett was asked to serve on the board. You'll remember Susan from past blogs in which I refer to her blog from a patient perspective. With these two new additions, the association will benefit by adding the patient's perspective to their governance.
On a side note... Due to the tremendous mobility issues with ALS, medical supplies such as canes, walkers, wheel chairs etc. are a lifeline for many patients. Unfortunately, it often takes time to get these items through insurance so the association helps fill the void by allowing patients to borrow items from the loan closet. We are currently, borrowing a walker and electric scooter, so we didn't have to purchase these items ourselves. Just one of the tremendous services that the association provides.
Foodie and Pinterest
I'll let in on a little secret, if you are "following Cheryl Timmons" on Pinterest... "I don't Pinterest" instead you are following, Patrick Timmons who is a Pinterest junkie. You'll notice that on "my" Pinterest the vast majority of posts and categories are food related (except for the sock monkey category, which is Patrick's favorite stuft animal). Patrick is definitely a "foodie" as they say, even though he told me for years he doesn't care what he eats, "I'm not as picky as you..." The truth is he loves trying different foods and recipes.
So when he went on disability in October, I gave him the job of figuring out the weekly meals and putting the grocery list together. This is a task I've always disliked and I generally avoid things I don't like doing. Which means, I wound up slapping meals together at the last minute or simply getting take out. For the record I have about five signature meals, so dinner at my house is never very exciting (at least food wise). But with the new meal boss, Patrick, we are enjoying new recipes every week such as Ravioli Bake, Crock Pot Chicken Pot Pie and Meatball Sub Casserole. All of which you can see on "my" Pinterest page.
Sunday Night Dinners, Grand Kids and Family
The family gets together every Sunday for dinner, we've been doing this for years and it's a nice tradition. The boys are always busy, Christian generally has a good story to tell and one never knows who Anthony will show up as. I"ll let you in on a little known secret, I'm not a huge baby fan - I mean babies are cute, but I've never been much of a snuggler so although I enjoy seeing Sofia laugh, I probably spend a bit more of my time with the boys. Patrick on the other hand is Mr. Baby Guy, he and Sofia are the best of buddies. They are constantly giggling and smiling at one another as if they have some inside joke going on.
Corrinne asked me to babysit the kids recently, so that she and Justin could attend a Christmas Party. I said "ok," but then promptly asked, "All the kids, Sofia too?" Fortunately, Corrinne is aware of my uncomfortableness with babies so she laughed and told me, don't worry she'll be asleep by 8:15. What Corrinne forgot was that Patrick and Sofia in the same room is not a good mix for sleeping, they just make each other laugh. So finally at about 10:45 Caitlin and I both looked at Patrick and said "Quit it, she needs to sleep." Corrinne forgot that when the BFFs (Best Friends Forever) get together that sleeping is NOT on the agenda.
Fantasy Football
The Fantasy Football playoffs are this weekend and Patrick's team, The Schmoes, is doing well playing for third place against his old friend Dave Schmidt, The Rhino Bunnies. Well, there are only six teams so maybe playing for third isn't the best, but hey he could be doing worse. This year I joined the "boys" in the football league and I'm proud to say that I'm in the "toilet bowl" - yep, I'm competing for last place (the whole thing was rigged I say...)
ALS Research and Clinical Trials
Patrick keeps up to date on ALS research, trends and recent studies in the medical field and through other ALS patients. In recent months he participated in a study on a medication that was being considered for muscle cramping. Unfortunately, Patrick has suffered from muscle cramping since the onset of ALS and at this time there are no drugs on the market for this ailment. It was a short six week study but the drug proved to work for Patrick. The positive outcome from this trial is that the drug is already on the market so since it worked for him he was able to continue using it.
When you go to the ALS clinic, one of the staff that you meet with is an expert on clinical trials, Dallas. She keeps abreast of trials going on throughout the country and is a resource for different theories on ALS cures or treatments. There are pros and cons when participating on clinical trials that you have to consider.
Pros...
Patrick is a proponent of clinical trials, his belief is that if he can help find a cure for ALS even if it doesn't benefit him directly than he's making a difference. I respect his beliefs; I've come to realize that the ALS journey is very personal and how one chooses to spend their time is up to them.
At the End of the Day...
The days activities keep us busy with lunch dates with friends, seeing the latest movie and hanging out with the grand kids. Patrick's mobility issues and energy levels do limit how much can be done during the day and he has to be selective. With ALS you must chose how you will spend your day; time is limited, energy can deplete you quickly and mobility creates its challenges, but in a way it makes life richer by forcing you to focus your time doing the things that are most important to you.
However you spend your day today, I hope it's with good friends and family. The best activities are often defined by who we spend them with.
Happy Holidays!
Here are some of the items that Patrick spends time on these days... (this is an aside from harassing the dog, being a backseat driver and checking out his Facebook page...)
ALS Association Board
Patrick was asked to serve on the Sacramento ALS Association Board in November by the Executive Director, Amy Sugimoto. We are big fans of the association that has proven to be such a resource for us. The association serves ALS patients and their families through support groups, education materials and a loan closet. Surprisingly, this is the first time they've placed patients on the Board of Directors. This decision will add a new perspective to the board and help to keep their focus on the patient. In addition to Patrick, Susan Catlett was asked to serve on the board. You'll remember Susan from past blogs in which I refer to her blog from a patient perspective. With these two new additions, the association will benefit by adding the patient's perspective to their governance.
On a side note... Due to the tremendous mobility issues with ALS, medical supplies such as canes, walkers, wheel chairs etc. are a lifeline for many patients. Unfortunately, it often takes time to get these items through insurance so the association helps fill the void by allowing patients to borrow items from the loan closet. We are currently, borrowing a walker and electric scooter, so we didn't have to purchase these items ourselves. Just one of the tremendous services that the association provides.
Foodie and Pinterest
I'll let in on a little secret, if you are "following Cheryl Timmons" on Pinterest... "I don't Pinterest" instead you are following, Patrick Timmons who is a Pinterest junkie. You'll notice that on "my" Pinterest the vast majority of posts and categories are food related (except for the sock monkey category, which is Patrick's favorite stuft animal). Patrick is definitely a "foodie" as they say, even though he told me for years he doesn't care what he eats, "I'm not as picky as you..." The truth is he loves trying different foods and recipes.
So when he went on disability in October, I gave him the job of figuring out the weekly meals and putting the grocery list together. This is a task I've always disliked and I generally avoid things I don't like doing. Which means, I wound up slapping meals together at the last minute or simply getting take out. For the record I have about five signature meals, so dinner at my house is never very exciting (at least food wise). But with the new meal boss, Patrick, we are enjoying new recipes every week such as Ravioli Bake, Crock Pot Chicken Pot Pie and Meatball Sub Casserole. All of which you can see on "my" Pinterest page.
Sunday Night Dinners, Grand Kids and Family
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| BFFs!! |
The family gets together every Sunday for dinner, we've been doing this for years and it's a nice tradition. The boys are always busy, Christian generally has a good story to tell and one never knows who Anthony will show up as. I"ll let you in on a little known secret, I'm not a huge baby fan - I mean babies are cute, but I've never been much of a snuggler so although I enjoy seeing Sofia laugh, I probably spend a bit more of my time with the boys. Patrick on the other hand is Mr. Baby Guy, he and Sofia are the best of buddies. They are constantly giggling and smiling at one another as if they have some inside joke going on.
Corrinne asked me to babysit the kids recently, so that she and Justin could attend a Christmas Party. I said "ok," but then promptly asked, "All the kids, Sofia too?" Fortunately, Corrinne is aware of my uncomfortableness with babies so she laughed and told me, don't worry she'll be asleep by 8:15. What Corrinne forgot was that Patrick and Sofia in the same room is not a good mix for sleeping, they just make each other laugh. So finally at about 10:45 Caitlin and I both looked at Patrick and said "Quit it, she needs to sleep." Corrinne forgot that when the BFFs (Best Friends Forever) get together that sleeping is NOT on the agenda.
Fantasy Football
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| The Football Guys... - (Alegra is taking the picture) |
ALS Research and Clinical Trials
Patrick keeps up to date on ALS research, trends and recent studies in the medical field and through other ALS patients. In recent months he participated in a study on a medication that was being considered for muscle cramping. Unfortunately, Patrick has suffered from muscle cramping since the onset of ALS and at this time there are no drugs on the market for this ailment. It was a short six week study but the drug proved to work for Patrick. The positive outcome from this trial is that the drug is already on the market so since it worked for him he was able to continue using it.
When you go to the ALS clinic, one of the staff that you meet with is an expert on clinical trials, Dallas. She keeps abreast of trials going on throughout the country and is a resource for different theories on ALS cures or treatments. There are pros and cons when participating on clinical trials that you have to consider.
Pros...
- You provide valuable information to researchers on various drugs, treatments or information that can be used to help understand the disease, provide symptom treatment or even a potential cure.
- Location: Most trials are not in Sacramento, instead you must commit to traveling to San Francisco on a regular basis.
- Time: You are taking time (the value is profound with ALS) for appointments and testing.
- Drug Continuance: Generally, in these trials you are not provided the drug after the trial is finished unless it is already on the market for another use. This is a highly controversial topic in the ALS world, it seems inhumane to not allow a patient that has a positive response to a treatment to continue while the trial is going through the various stages of approval.
Patrick is a proponent of clinical trials, his belief is that if he can help find a cure for ALS even if it doesn't benefit him directly than he's making a difference. I respect his beliefs; I've come to realize that the ALS journey is very personal and how one chooses to spend their time is up to them.
At the End of the Day...
The days activities keep us busy with lunch dates with friends, seeing the latest movie and hanging out with the grand kids. Patrick's mobility issues and energy levels do limit how much can be done during the day and he has to be selective. With ALS you must chose how you will spend your day; time is limited, energy can deplete you quickly and mobility creates its challenges, but in a way it makes life richer by forcing you to focus your time doing the things that are most important to you.
However you spend your day today, I hope it's with good friends and family. The best activities are often defined by who we spend them with.
Happy Holidays!
Saturday, December 7, 2013
Dad
I started this blog
to chronicle our family's journey through the trials of an ALS diagnosis. And
secondly, it was to have a record of this period of time for myself. As with
all things, ALS encompasses a portion of our lives, but the world continues and
joys and sorrows take place as they always do. With that I'm compelled to
create this blog to remember and celebrate my father, who passed away this past
week and has left a void in my life and the lives of family and friends.
Yes, I am wallowing a little in self-pity, feeling I've been
handed more than my share of sadness these past few years. But honestly, the
truth is, part of being human is loss and sadness – it’s a shared
experience for all of us. We all experience loss, love, triumph, pain and
great happiness, it is a connection we have to each other as human beings.
There is a wonderful line in the Bob Segar, song "No More", that says
"no one gets to walk between the rain," so I know I'm not the only
one who has experienced sadness- we all have our moments in the rain.
For Dad...
The last couple years have been difficult for Dad; he's struggled with some health issues and mild dementia. However, it didn't seem to reduce the sadness or shock when you hear your father has passed away. With his passing we, my sister Denise, her husband Mike, Patrick and I headed home to help my Mom with arrangements. We traveled over Donner Pass through Reno, past the shoe tree to our hometown, Susanville, CA.
We met my mother and brother
immediately at the funeral home to discuss arrangements. It's a surreal
experience to make these decisions for your dad and the pain on my mother's
face was difficult to witness. We made funeral plans with the mortician
and hopefully these decisions would have been what my father wanted, he
never said.
My sister and I split duties with her putting the funeral program together and I writing the obituary. To gather information for the obituary and program, the family sat down and chronicled his life, hobbies and activities. My mother brought out many personal items, some I’d never seen that were interesting and nostalgic. My father was a rich man, not financially, but in a life well lived. He was intelligent earning his bachelors and masters degrees at UC Berkeley, loved the outdoors and spent hours bird watching, hiking, and walking. He was a walker and loved just getting out to view the day. As a young man he climbed and hiked often and took us kids on a number of outdoor outings.
My father wrote Haiku poetry, collected stamps and was fascinated by Alexander the Great, whom he wrote his thesis. His poetry was published in a variety of publications throughout the years. During my parents early years, my father would write poems for my mother. These two poems my dad wrote to my mom while he was away at boot camp and now seem fitting for the moment. My dad's Haiku's often reflected on a specific moment in time...
The last of the day
Is glowing far away
beyond the clouds
How far I am from
home when daylight
ends beyond the clouds
I spent some hours with all the collected information for Dad's obituary. Although I think the obituary chronicles his life, it still feels not quite representative of the father I knew. But no amount of tweaking will make it better, so “it is what it is.”
Heading home, my sister and I stopped at the shoe tree and added a pair of Dad's shoes to the lower branches. It's a fitting tribute to a man that so loved the outdoors. Here is my attempt at Haiku...
Ownerless shoes in a tree
dangling from a branch
a father missed
Lately, I've reflected on my days with Dad and here is a list of the things he taught me, the things I remember and the gifts I am grateful for...
He taught me..
to play the Chinese game of Go
the importance of appreciating nature and the outdoors
that a formal education is important
that one should never stop learning
that time is the greatest gift you can give someone.... and
to stand up for your beliefs however unpopular
I remember spending time...
hearing bedtime stories including Arabian Nights and Aesop's Fables
collecting stamps
going bird watching.... and
playing chess
I am grateful to a father that always had the time to spend. In today's hurried world, I realize it was such a generous gift.
I have a lovely note my dad wrote me 20+ years ago - that thanks me for a gift I made him, in the note he states, "thank you for the horse... and for the countless things I've neglected to thank you for over the years." - So to that Dad, I say "DITTO" and until we meet again.
"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go" – Author Unknown.
 |
| Dad and I |
For Dad...
The last couple years have been difficult for Dad; he's struggled with some health issues and mild dementia. However, it didn't seem to reduce the sadness or shock when you hear your father has passed away. With his passing we, my sister Denise, her husband Mike, Patrick and I headed home to help my Mom with arrangements. We traveled over Donner Pass through Reno, past the shoe tree to our hometown, Susanville, CA.
 |
| At my parent's 50th: Chris, Me, Mom, Dad and Denise |
My sister and I split duties with her putting the funeral program together and I writing the obituary. To gather information for the obituary and program, the family sat down and chronicled his life, hobbies and activities. My mother brought out many personal items, some I’d never seen that were interesting and nostalgic. My father was a rich man, not financially, but in a life well lived. He was intelligent earning his bachelors and masters degrees at UC Berkeley, loved the outdoors and spent hours bird watching, hiking, and walking. He was a walker and loved just getting out to view the day. As a young man he climbed and hiked often and took us kids on a number of outdoor outings.
My father wrote Haiku poetry, collected stamps and was fascinated by Alexander the Great, whom he wrote his thesis. His poetry was published in a variety of publications throughout the years. During my parents early years, my father would write poems for my mother. These two poems my dad wrote to my mom while he was away at boot camp and now seem fitting for the moment. My dad's Haiku's often reflected on a specific moment in time...
The last of the day
Is glowing far away
beyond the clouds
How far I am from
home when daylight
ends beyond the clouds
I spent some hours with all the collected information for Dad's obituary. Although I think the obituary chronicles his life, it still feels not quite representative of the father I knew. But no amount of tweaking will make it better, so “it is what it is.”
Heading home, my sister and I stopped at the shoe tree and added a pair of Dad's shoes to the lower branches. It's a fitting tribute to a man that so loved the outdoors. Here is my attempt at Haiku...
 |
| The Shoe Tree - with my father's shoe... |
Ownerless shoes in a tree
dangling from a branch
a father missed
Lately, I've reflected on my days with Dad and here is a list of the things he taught me, the things I remember and the gifts I am grateful for...
He taught me..
to play the Chinese game of Go
the importance of appreciating nature and the outdoors
that a formal education is important
that one should never stop learning
that time is the greatest gift you can give someone.... and
to stand up for your beliefs however unpopular
I remember spending time...
hearing bedtime stories including Arabian Nights and Aesop's Fables
collecting stamps
going bird watching.... and
playing chess
I am grateful to a father that always had the time to spend. In today's hurried world, I realize it was such a generous gift.
I have a lovely note my dad wrote me 20+ years ago - that thanks me for a gift I made him, in the note he states, "thank you for the horse... and for the countless things I've neglected to thank you for over the years." - So to that Dad, I say "DITTO" and until we meet again.
"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go" – Author Unknown.
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