How is Patrick Doing #8?, Part I - Speech and Other Bulbar Changes

Patrick's progression over the past six months continued to challenge us. We are now faced with a new set of declines involving the bulbar region (head and torso). These changes are related to his chewing and speaking They are sad and trying and we continue to work to find ways to adapt. I'll admit I've had some profound moments of frustration, where I just kind of throw up my arms. The disease never relents, it may slow or plateau but it never relents. Part I of this "How is Patrick Doing?" blog is a discussion of the challenges due to bulbar decline. Part II will go over some of the continued mobility problems and the medications we're using to combat these symptoms.

With ALS everything is about time and progression, you know that the changes will come but you don't know when. We've witnessed other patients progression, but they vary by individual so there is no road map to prepare for the things to come, you only know they will come. I'm not sure if it would be comforting to know what's next or how soon, sometimes I wish I knew, but it wouldn't really change anything. There has always been an overlap with Patrick's issues; for example we now struggle to understand Patrick's speech but in truth his voice hasn't sounded "normal" for over a year. So this is a current challenge but certainly not something that happened overnight.

The Importance of Communication
There are so many losses in this disease. An ALS caregiver described the losses as a deck of cards, every week a card is removed and you are left with the remaining cards. ALS is a relentless foe, so eventually it takes all the cards. By far the greatest loss over the past six months and perhaps throughout this entire journey is Patrick's ability to speak. At this point I would say I can understand 50% of what he's trying to say, but if I'm distracted or if he's tired I probably won't understand at all.

The loss of speech creates such a void for me and him. The conversations while driving in the car, while going to bed or while sitting outside on the porch are becoming less and it is so frustrating for him when I ask him for a third time to repeat what he just said. He has such a quick wit and always makes me chuckle but if I ask him to repeat it over and over, it simply loses its impact. He will sometimes give up trying to say something and I fight the urge to simply smile and nod which often folks do in response to not understanding. Frankly, he knows that they don't understand. Sadly, I've become the translator for him in most situations.

At a past support group I remember a conversation where a caregiver was complaining about taking over the driving responsibilities from her husband and she was frustrated because her husband was an awful backseat driver. She just wanted him to "be quiet." After she said that another caregiver responded sadly, "be careful what you ask for..." her husband had recently lost his ability to speak. Frankly, I felt sorry for both caregivers - I hate backseat drivers and I hate Patrick losing his speech.

Johannes assisting with SGD Setup

We are fortunate to live during this time, a hundred years ago there would be no real method to communicate with an ALS patient except perhaps yes or no questions through blinking. But today we have speech generating devices (SGD) that patients use to continue communicating. I'm sure you've seen them being used by Stephen Hawking or Steve Gleason. The device is attached to the front of the wheelchair and controlled by eye movement. Patrick received his Tobii Speech device in November and has been working to learn to use all its features.

To say using a speech device is the same as speaking would not be true. The device follows your eyes and you select phrases or words by allowing the cursor to dwell on a selected item. It takes some time to put a sentence together and makes it near impossible to contribute to an active conversation.  OJ Brigance, of the Baltimore Ravens, who was diagnosed in 2007, explains it well, "I have been able to communicate well with my DynaVox, even with the loss of my voice. The only frustration is the inability to communicate real time and conversations. By the time I finish typing, the topic may have changed, so it requires patience. With that being said, praise God I can still audibly communicate."

Moving your eyes in this manner has its own level of exhaustion, the eyes were simply not made for it. I find that conversations are becoming more directive: I need this, please do that etc. We both agree that loss of speech is the worst card that ALS removes from the deck. As with all his losses we are learning to adapt, but this is like removing the joker from the deck of cards. The joker fills in when something is missing so without it there is a big void.

Recently, Katherine Adraktas with the Sacramento ALS Association did a video of us to promote the speech workshops and loan closet services provided by the association. Patrick is using a Microsoft Surface and Quha Zono wireless gyromouse in the video. The mouse works by moving the head. He is now slowly making the change to the eye gaze technology but he's used the Zono mouse for about a year.

A word to fellow caregivers and ALS patients, the process of getting a speech generating device is long, for us two months from start to finish, so don't delay in getting the process started. 

Other Symptoms
Respiratory: Patrick continues to use a breathing machine at night called a Trilogy. This machine helps his diaphragm rest by forcing air in and out, a little different than a c-pap that only provides a constant flow of oxygen. Unfortunately, because his facial muscles have become so weak, Forbes Clinic does not have the equipment at the mobile Sacramento clinic to measure his breathing capacity so we don't know his current breathing levels. However, he doesn't need the machine during the day which would indicate a decline so we are still in the beginning stages of respiratory decline.

Chewing and Swallowing: We use our tongue and muscles to move food around, clean out our teeth and make things ready for swallowing. They work together to assure that food makes its way down safely. This is a challenging area for Patrick and it has slowed his ability to eat, as well as making him avoid certain foods that are simply too difficult. We combat choking by cutting bites that are not too big and medications are easier to digest with a thicker liquid - we use juice. Water can be a choking hazard for an ALS patient, which still sounds odd to me, but it is true.

Odds and Ends: Patrick has some odd ALS symptoms in the bulbar region. Recently, he developed difficulties breathing when I baked bread and there was a strong baking smell. After discussing this at clinic the respiratory therapist concluded that this was due to the salivary glands developing spasticity when they were stimulated by the smells. No, there was nothing she could really do, except to say "that's a bummer." I couldn't agree more...

Another symptom is called the pseudobulbar affect which causes amongst other things exaggerated emotional responses. It's an over reaction like excessive crying or laughing to something that does not warrant it.  This has been an ongoing issue for Patrick and is common in ALS patients. He does have medication that helps keep this under control. We got the medication when he started crying when people were eliminated on Dancing with the Stars.

A Note of Warning
Part II of this blog is primarily related to our journey navigating the use of cannabis for managing his symptoms (there is plenty of humor in it). If this insults your sensitivities or you simply think it's wrong you may want to skip it. For me I'm in this journey for Patrick, if it helps with some difficult symptoms, I have no problem with him using marijuana. With all the medications he takes, challenges he faces and severity of his diagnosis the moral issue of his use of marijuana is just not significant to me.

I wish you all the best as we start this new year! Here are a few recent photos:

Us

"Storytime"

Patrick and Christian at his 8th Birthday Party

Monkeys During the Holidays

I've had a monkey brain for as long as I can remember. The monkeys in my mind have meetings, make speeches, write to do lists, worry and generally make a lot of racket. They shift their discussions quickly and no topics are off limits. They have meetings when I'm trying to sleep or wake me up during the night, they distract me throughout the day and I suspect Patrick would say on occasion make me a bit spacey.

I heard the term "monkey mind" years ago, at a workshop on how to reduce stress, meditate and bring calm into your life. Buddha originated the concept of "monkey mind" over 2,500 years ago. He emphasized the need to "manage our monkeys" through meditation to calm the mind; a bit easier said than done. Well the monkeys have been overly busy this holiday season and ideas for this blog are not as tidy as I'd like them to be. So, I'm writing this disclaimer, if this blog doesn't tie together neatly for you, just recognize that you have listened to not one, but many of the monkeys clattering around in my brain.

The holidays can create a lot of stress for people. It's a time of expectations, remembering the past and spending time with family and friends. Patrick was diagnosed with ALS three years ago, about a week before Christmas. I don't know the actual day, I could look it up, but it really doesn't matter. What matters is that our lives permanently changed three years ago. I don't dwell on the anniversary but it does enter my conscious at this time of year. I remember coming home from the ALS Clinic in San Francisco and stopping at Togo's for sandwiches. As the sandwich maker worked he talked about what he wanted to get his girlfriend for Christmas. He was friendly and rambled on about getting her the curling iron she had asked for, he wasn't sure if it was "enough." Why I remember this, I have no idea. I don't think I really listened to what he was saying, but when I headed out I told him, get her a little something more, like flowers, even if she didn't ask.

It's funny the things we remember and the things we forgot. We don't get to choose instead the mind makes these decisions for us - perhaps the monkeys have something to do with it. This time of year, my thoughts often drift to my dad, he died a couple days after Thanksgiving. I remember the call from my mom and falling to my knees. So, this time of year brings sad memories, but I try not to dwell, my father wouldn't want that. Instead we light up the house, buy lots of gifts for the grand kids and drink a ton of eggnog. I suspect we all have mixed feelings this time of year, it's a time of celebration and giving but also a time of reflection and remembering those who are not with us.

I love to give gifts, there is no better feeling than finding that "right" gift for someone you love. Best gift I gave this year was to my mother, I got her a cell phone. It was the Jitterbug brand that caters to the over 50 crowd (yes, I'm almost there too). She has been busy learning to use it which has been fun for her and all of us. She spent Christmas calling everyone and telling us she was working with her new gadget, for mom everything technical is a gadget.

So, what do you get someone with ALS? Caitlin and Corrinne both asked me this question over the past month. I didn't really have an answer other than "time." Truly time is our most precious commodity and for Patrick the thing he is most grateful. Corrinne is learning to sew (mom you would be proud) and for Christmas made Patrick a wonderful lap blanket. The lap blanket idea came from our genealogy research. I found the will of my 2nd Gt. Grandmother and she left a lap blanket to one of her children. After reading this, Patrick announced he would like a lap blanket. So, Corrinne set out to hand make a blanket for Patrick. It's a beautiful blanket with Denver Broncos on it and has already got plenty of use. She did an amazing job especially for her first time.

Caitlin is on semester break and has begun reading to Patrick. It started with a book on their Mayflower ancestor, Stephen Hopkins. When she asked her dad what he wanted for Christmas, he said that the time they spent reading was a gift. If you know Caitlin, you'll laugh at her response, she said "that's like giving someone a coupon for a hug..." I quickly responded, "I'll take a coupon for a hug" which she responded "ok but its a coupon which means its just a discount." She decided that reading to dad was not enough and that she would cook for us on Christmas. We had eggnog french toast for brunch and manicotti for dinner. The real treat was frozen hot chocolate for dessert - if you haven't tried it, its delicious.  Here is a link to the recipe: Link to Recipe

We are blessed this Christmas with a wonderful family. The monkeys were busy talking loudly and causing mischief but I think overall they spent most of their time enjoying the festivities. I hope the season has brought you much happiness and the memories of the past did not cause much pain, but instead provided you with grace this holiday season.

Happy Holidays to all! I did not send Christmas cards this year, but we wish you a very Merry Christmas and peace in the New Year. Here are some photos from our family to yours.

The Timmons Family (missing Justin who took the photo)

The House at Christmas

The skeletons helped decorate

Sofia

Caitlin in her new hat

Jake looking festive!

Life as a Caregiver

Patrick and I (Johannes & Vineet behind us)

I'll admit when I see a photo of an ALS patient, I look around to determine who is with them. Where is their caregiver? I know, that somewhere nearby, whether in the picture or not, is a "me." Someone who cares for the patient, making sure their needs are met and is responsible for their well being. With ALS, the level of care provided by a caregiver varies by the progression of the disease and areas of the body affected. But as the disease progresses the need to have someone care for the patient is absolute. ALS is not a journey one takes alone.

A few months back, I was sitting outside Starbucks enjoying some hot tea while Patrick was at an ALS Board meeting. A couple of gentlemen sat at the table next to me and began discussing what sounded like a business proposition. I'm not exactly sure of the context, only that one gentleman was obviously trying to sell his company's services for a large project. The man emphasized a number of times that he could commit 100% of his time to the project because he was "unencumbered." He went on to describe that his mother had passed away a couple months back and his divorce was now final so he was excited to be able to put all his energy into his business. He looked about my age - 50ish and genuinely seemed delighted at his newly found freedom.

I've considered this conversation a few times and I'd be lying if I didn't say that I have moments where I'd love to be unencumbered. No responsibilities, no worries and no expectations; and if this where my thoughts ended, I'd likely be in the Bahamas somewhere soaking up the sun. But after my romantic interlude with being unencumbered, my thoughts always drift back to a couple of truths; first, and probably because I am a caregiver, I think, wow I hope this gentleman doesn't get ALS, Parkinson's, Alzheimer's, cancer, etc. because whose going to take care of him? My second and much more significant, is how lonely it must be, being unencumbered.

The life of a caregiver is not glamorous. I hold many hats; I'm a barber, home care aide, cook, waitress, pharmacist, respiratory care therapist, dental assistant, comfort specialist, bug killer, back scratchier, driver, entertainment coordinator, nurse, secretary, manicurist and bookkeeper - to name a few. Caregivers are always responsible, so even when given a break, if something happens, we are the first number to call.

I've been caring for Patrick since his diagnosis, now nearly three years. The responsibilities started with simple things: buttoning his shirt and clipping his nails. Now, three years later everything he does is managed by me from showers to eating. I've learned a lot during this period and admittedly I'm not the same person I was at the onset. I've learned to:

• Find the humor in situations... Things are easier when you can laugh about them. Don't take yourself too seriously... the worst times are when I just can't find the humor in the moment.
• Find things that make you happy and enjoy them like a pig in slop! It's amazing how wonderful that morning cup of tea is when you really give it some thought. Simple things are often the most enjoyable.
• Make sure to have time for yourself; I have a group of friends I have dinner with on a monthly basis.. It can be bumpy sometimes getting out the door, but I always manage to get there and never regret it. Additionally, Caitlin and I go to the movies each month while Patrick enjoys an evening with his old KPMG buddies Johannes and Vineet. We are huge fans of Studio Movie Grill in Rocklin.
• Find a support system filled with people that understand your situation and support you. I have a group of fellow caregivers that I see off and on at various functions and I communicate with them through our vast array of technology options. A big shout to my fellow caregivers: Melinda, Therese, Rebekah, Betty, Lachke, Jennifer, Ron, Steve and Dara to name a few. A special thanks to Cliff who cares for his wonderful wife, Susan and meets me every couple months for coffee at Starbucks. I truly value our friendship. If you'd like to read about the daily life of an ALS patient from the perspective of a patient, here is a link to Susan's blog, http://www.susanssteps.com/

  

  Susan, Cliff, Me and Patrick

• Keep a sense of self. Do stuff that is uniquely YOU, for me that means doing things that are not ALS related, not caregiver related and not because Patrick likes it (although, we've always liked quite a bit of the same things). Just stuff I like... I read Jack Reacher novels, decorate for the holidays (generally a little over the top) and walk Jake, the dog, each morning. This is me.. and it reminds me that I'm unique.
• I've learned how important the job of a caregiver is and having said that I owe a huge thank you to my mom! My mom took care of my dad while he struggled with health issues his last few years and for a number of years was a caregiver to my grandparents (her in-laws). I recognize the tremendous role you played mom and owe you a debt of gratitude! (I know my mom will read this blog because she's always been my biggest fan).

  

  Mom & Gt. Grandson Christian

• Additionally, on the thank you note. Sending hugs and thanks to Sean and Debbie Timmons who regularly visit, bring soda pop (as Shirley would say), take to dinner and spend time with Patrick's mother Shirley. Patrick and I have always felt tremendous gratitude that you are able to be there regularly when we cannot.
• Out of all the things I've learned, absolutely the most important is this, "tomorrow is promised to no one." - Live now, love now, forgive now!-

November is National Caregiver's Month so celebrate the caregiver in your life. We are great in numbers, so I suspect you know someone who regularly cares for a spouse, parent, child or friend. Send them a kind word, give them a hug and remind them that they are important!

I wish you an encumbered holiday season with family, friends and lots of joy!

Kindness

If you read the newspaper, I guess that's old school so let me restart, if you read the news on the Internet today you are probably feeling a bit discouraged by what seems to be our inability to "just get along." Not a day goes by where some horrific act takes place and we are left to ponder what the heck is going on with our society. Well, I don't have any answers for you, and I'm not writing this blog to discuss world politics, gun control or race relations. 

This is the world on a broader scale and throughout history it's been shocking to see man's inhumanity to man. But, when I look at human relationships on a personal level, I have to say the story is so different. Frankly, I'm amazed and touched by the amount of kindness that has been bestowed to Patrick and I since his diagnosis. People are often reaching out to touch base with us, seeing if there is anything we need or just letting us know that we are in their thoughts and prayers. For the many texts, messages, meals dropped off, and thoughtful gestures we are grateful. I've often thought that I should write a blog and thank all the wonderful people in our lives, but frankly I would likely forget someone and I don't want to do that.

Recently, we had a sprinkler pipe in our backyard spring a leak. A gentleman walking his dog stopped by the house to tell me that a large gush of water was coming out our front yard drain. I went outside to be met by a couple of the neighbors to see the "roaring river" that was  running across the sidewalk. There was some question as to whether it was coming from my backyard or my immediate neighbor's, Hector, so with Hector's help we proceeded to figure out who was responsible for the leak. By turning off the sprinkler valve (didn't know this existed) it became apparent that I was the lucky winner of the water leak. With current water issues, I knew that it had to be fixed quickly but I had absolutely no idea how to fix it or where to start. So, now it's out - I'm not really a Ms. Fix It type of person. Hector kindly offered to come over and find and fix the leak, which I immediately dismissed because.... well, I didn't want to trouble him. 

So, I set off to hire someone to fix my water leak problem. I started with the front yard landscaping company and unfortunately, the gentleman we worked with had just been hospitalized.  So after a day or two of trying to work with them I found out why they weren't responding to my requests. This was a couple days before the Walk to Defeat ALS and I was quickly swallowed up by the tasks at hand for our walk team. So, the sprinkler situation was put on a back burner. All throughout these days, Hector stopped by a number of times to see if he could work on the problem. Finally, I told Patrick, "I think I'm going to let Hector fix it." A few notes about Hector, he is a handy guy, he's always outside working on his yard, or fixing an automobile. So, while we were at the ALS Walk, Hector fixed our water leak in the backyard. Thank you, Hector.

So, I guess I'm still learning to accept the kindness of others. I must say that I firmly believe there is still much kindness in the world regardless of what we see in the news.

I'll leave you with the final outcome of our front yard Halloween decorations. The grandsons were a bit disappointed that I didn't use the blow-ups but they like the skeletons, "they are scary grandma." On a side note, Anthony, is having a Halloween/Birthday Party the first week of November at our house - so the skeletons will stay out longer than usual. We haven't named the skeletons yet, so if you have any ideas please let us know!

For years the car wash at Arden Way and Watt Avenue put "sayings" on their sign and I enjoyed reading them. Yes, I got my pearls of wisdom from a car wash... anyway, I don't go down that way much anymore and apparently the car wash has changed hands because last time I was there the sign read $21.99 for complete car wash service. But, not to worry, the Togo's Sandwich Shop on Foothills puts sayings up on a board behind the counter, the recent saying is "If you have the choice of being kind or being right, being kind is always right." - Anyway, I get my philosophical advice now at Togo's Sandwich Shop...

Happy Halloween!

Notes on Life #8

My last Notes on Life post was right after tax day. The irony is that I'm doing this blog, but I still have not filed our taxes... we are on extension. Does anyone know a good CPA? - Just kidding... True to all predictions this has been a horrible fire season and as I write this I look out to a smoke filled sky. I chased a few pot smokers out of the "wetlands" next to our house the other day.  Not because I cared so much about the pot smoking, but over the past 15 years I've witnessed a number of fires next to our house and right now the ability to evacuate and rebuild would be a bit overwhelming for us. Don't be confused by the term "wetlands," right now it's an open space with very dry brush...

The past six months have had there ups and downs. As always with the fall approaching, we are busy planning out our holiday decorations (Halloween, Thanksgiving and Christmas) and ALS Walk t-shirts... Here are some of the highlights:

The New Front Yard
The nicest change we've had over the past few months was relandscaping our front yard. We decided to do this because of the drought in California and the strict limitations on water use or basically, we were tired of looking at dead grass. After considering the possibilities and recognizing that the space could be much more usable, the change made sense. When the house was built there was a step from the front walk way to the porch and a step down to the porch in front of the window, essentially it was completely non-accessible to Patrick in his wheelchair. So, we worked with a landscape designer to create an environment that reflected us, allowed access for Patrick and made it enjoyable to spend time outside. 

Here are some before and after photos...

We never spent time in the front of the house until now (when it's not too hot or smoky) we sit on the porch, chat with folks walking by and listen to the water streaming from the fountain. It is a sanctuary.

The tricky part of the new front yard landscape is how to manage all our holiday blow-up decorations. Patrick and I are hard at work on this issue and we'll post pictures in the months to come so you can see the outcome. I was a bit surprised that I've had a number of neighbors ask me how our holiday decorations will work... And here I always thought they were just for my own entertainment.

To my ALS patient and caregiver friends, I've come realize that we spend quite a bit of energy in the early portion of the disease trying to scratch off items on a bucket list. I support this and we had a lot of fun travelling in the early stages of the disease. But, as time progresses, travelling becomes more challenging, so don't neglect focusing on what brings you happiness in your regular daily living. You will spend a lot of time at home, make it yours, redo the front yard, get a funny dog that makes you laugh or buy the biggest damn TV you can find, whatever brings you joy in the day. One of my caregiver buddies, replaced a small living room window with a large window so that his wife could view her garden throughout the room. It is truly lovely, both the window and her garden.

Alexa
A couple months back we received a surprise package from my sister Denise and her husband Mike. It contained the new Amazon Alexa (formerly, the Amazon Echo). Patrick and Caitlin immediately began setting up the device and purchasing the much needed accessories. Alexa is a voice activated device that allows you to turn on and off lights, manage your shopping list, access your calendar, play music and many other functions. It is also great fun for the grand kids because you can ask her a variety of things and she responds with funny replies. She even tells jokes.

As mentioned in my prior blog Patrick's speech is declining, so the voice activation doesn't always work for him. When we initially got the device he asked Alexa, "how do you connect your calendar" and she responded "I added canned ham to the shopping list." Which was sad, but you have to chuckle at these things. On a positive note, Patrick's computer voice Alexa understands better than anyone and he has the additional option of issuing commands through the computer. 

This is a new device and it seems to have really taken off with features being added on a weekly basis. The automated house that many of the more famous ALS patients have is really out of financial grasp for most of us, but Alexa is the start of something with great potential. A huge thanks to Denise and Mike, it really was a thoughtful gift.

Our Continued Search for the Past
We spend a considerable amount of time researching our family trees and corresponding with cousins (we've met some wonderful distant relatives by collaborating on family histories). I think there is a point in our lives where we wonder about the people that came before us; who they were, where they came from and what trials they endured. I believe our ancestors live in us both spiritually and through our DNA. It's amazing to think of all the pieces that had to fall into place to make us, us. 

So our search for roots continues... Some of our family lines we trace a great distance back and others we have dead ends. Throughout this journey we have found some interesting relatives: famous or infamous. The stories we've uncovered range from inspiring to tragic. Patrick is related to Mickey Mantle and my 10th great grandmother was Mary Bliss, the first woman in Massachusetts accused of witchcraft. 

One of Patrick's family lines goes all the way back to the Mayflower 1620. A gentleman by the name of Stephen Hopkins is Patrick's 10th Great Grandfather. Stephen was a colorful character and with his wife and children sailed on the Mayflower to America. This was not his first voyage and prior to the Plymouth Colony he was part of the Jamestown Colony. He was expected to help the colonists become established in the new world. Because of this direct lineage we are working on applying for membership in the Mayflower Society. This has been quite a tedious task with all direct relationships from Patrick to Stephen having to be proven. 

UC Merced

Looking at Colleges
We are touring and researching various college options for Caitlin. We visited the California Maritime Academy in Vallejo and UC Merced. Both of these colleges have solid mechanical engineering programs and we were impressed with both. Other colleges she is considering are UC Davis, University of Nevada, Reno, and San Francisco State University. She refuses to consider CSUS, which I think would be awesome, not sure her hesitation, both Patrick and I are alumni (that certainly can't have anything to do with it:))

She is in application phase and will start next fall at her new college. For me, considering her leaving is very bittersweet, but it is always the way, children must leave home.

Touring UC Merced

Walk to Defeat ALS, October 3rd at Raley Field
The Walk to Defeat ALS is Saturday, October 3rd and we are busy putting together t-shirts and logos! We hope you can join us for this event it's a great cause, nice people and a fun day! A huge thanks to all that have contributed to Team Timmons either by walking or donating. There are so many ALS families in need and the Association helps to provide them services on a "shoe string" budget. You can still join us, here is a link to our Team Walk page... Click Here

Odds and Ends
We were surprised when Corrinne told us that the boys (Anthony & Christian) had not seen Star Wars. One of my fondest memories with my dad was driving to Reno (2 hours from Susanville) to see Star Wars when it was released. We waited in a line that stretched at least two city blocks. So, I knew we had to share the Star Wars experience with the boys. We invited the boys over and surprised them by setting up the movie in the backyard. We just purchased a projector for our holiday decorations and Patrick thought how fun it would be to watch a movie under the stars. So we put up a "screen" on the backyard fence, rearranged the furniture and popped popcorn.

Every fall for the past 25 years, Patrick has participated in a Fantasy Football league with a group of past fellow Electronic Data Systems (EDS) employees. A couple years back one of the guys quit so I joined the league with my famous team, "The Ball Busters." Not to brag but last year The Ball Busters were undefeated (oh, wait that is bragging.) Well, the league started back this past week with a bang, yeah I lost my first game.

Hope all is well in your world. Here are a few other family pics from the past six months...

Comic Con

Farrell's Ice Cream Parlor

Christian's Theatre Play - he had speaking parts!

More pictures of the front yard landscaping...

The Little Goblin

Our Seating Spot

Love the Sound of Running Water

The Head

Reusing Our Old Fountain

The Tree

We cut down a 40 foot redwood tree in our backyard this week. It was over 20 years old and stood proudly in the center of our backyard. We've noticed for a while that the tree was damaging the patio in the backyard, so we hired a tree company to prune back the roots. Unfortunately, root pruning was not possible and the tree would continue to cause damage to the patio and likely invade the pool and house foundation. Over the years, I've been the "Lorax" in my house insisting that when the pool was built that none of the trees were damaged and managing the complaints of tree cleanup. Our neighbor who lives behind us, much to my shock, was delighted to see the tree being removed. He said he was tired of the mess. 

On the morning it was removed, I cried. It was such a beautiful tree, a focal point in the yard and it kept the backyard and house shaded. It probably would have been easier if I'd had a moment to consider the tree removal, but it was only a few days after getting the news that the company arrived to remove it.  I'm a firm supporter of the "denial" phase when working through loss and grief; I think we all need a moment to catch our breath, to consider, and absorb information before working through the other stages. Denial gets a bad rap - we tend to think it's a negative for "someone to be in denial" but I think to survive the various losses in our lives we need moments of denial. 

There is a void now in the backyard with only an ugly stump where the tree once stood.  I continue to grieve the loss of the tree. I have all the usual feelings denial, depression, anger, and remorse - not necessarily in that order There is a pattern to my grieving, it's painful and familiar. I've seen it in myself and others; although it seems to vary somewhat in each of us. For me, the feeling of despair can be quite overwhelming - it's like the air is quickly sucked out and I'm not sure if I'll ever feel happy again.

Being part of the ALS community and having many friends that are caregivers or patients living with ALS makes you the witness of grief. It's a very raw emotion, it brings out all that you are good and bad, leaving you incredibly exposed. A dear friend who has her own serious health condition described it as "removing the veil." Truly the veil is removed and our most basic self is exposed and the world around us appears differently.

The world appears differently because the things we dreamed of, planned on and hoped for are all changed. We all talk of "5 years from now" or "when I retire" or "on our 50th anniversary" these discussion stop or drastically change when you're given an ALS diagnosis. You must begin the painful process of looking at things more immediate: today, next month or next year. This change in focus really does put life in perspective and things that once seemed so important lose their appeal. This is not done overnight and after almost three years I still mourn the loss of our past life along with all its hopes and dreams.

The removal of the veil however does not come without some grace. You begin to find the wonder and beauty in the moment. You watch the birds in the feeder outside your window, laugh at the dog's antics and enjoy your favorite cup of tea - just a little more. As I write this I'm looking forward to our drive out to Folsom today to get cronuts at BJ Cinnamon's - yep, they are delicious. So, there is pleasure in everyday things and we continue work on focusing on the positives. 

The trunk of the tree is stacked up at the bottom of our drive way. Frankly, it's beautiful wood. I have a neighbor who wants to use it for firewood and one that is giving a piece to her son to create a wooden sculpture. I like the idea that the tree has a new purpose and does not go to waste. I'm keeping one of the stumps - haven't decided where to put it or how it will be used but it's a tribute to a beautiful tree that we were fortunate to spent a considerable amount of time enjoying its shade.

Patrick is anxious to "fix" the tree area in the backyard. So, he's busy considering options to make it look nice. I haven't quite moved into the "fix it" mode, I'm still sort of digesting the loss. I'm sure we can salvage it somehow although it will never be the same as the beautiful redwood tree. I'll keep you posted on the transformation.

Enjoy your day today! There are plenty of small wonders to behold!

How is Patrick Doing #7

It's been six months since the last "how is Patrick doing?" blog. Over this period there has been a continued decline in Patrick's mobility and speech. We are in the midst of change due to these declines and working to adapt and create new routines. Sometimes the difficulty is psychological not physical, but generally it's a combination of both. It's astonishing to me that sometimes the smallest changes can cause the most difficult adjustments. This has been the case recently with the acknowledgment that even a few steps is becoming too much for Patrick to accomplish.

Mobility
Patrick's mobility is declining and it is requiring some significant changes to his routine. We are fortunate that he has been able to stand and take a few steps for this long. This made transfers between chair to bed and chair to chair fairly easy. However, even these few steps are now becoming difficult and over the past few months we began the task of modifying our routine to include the use of a Hoyer lift.

The Hoyer Lift

I think we've been avoiding using the lift for a variety of reasons. For me, it's an increase in the tasks to be completed, a new piece of equipment to learn and a reflection on where we are in this journey. We've known that we needed to adjust our routine, but actually starting to make these changes is difficult - that's the psychological part. So, to delay using the Hoyer lift, we purchased a Beasy Board which allows the person to transfer by sliding on a board from surface to surface. We tried it once and Patrick wound up on the floor - it probably wasn't a good choice for us. I realized after lifting him off the floor with the Hoyer lift that perhaps it is the better choice for transfers.

If you aren't familiar with the Hoyer lift, here is a picture. It's a pretty basic concept and has been around for a number of years. You can purchase a variety of slings to use for different needs and so far the sling recommended to us has worked fine.

These changes always come with stress and adjustment. I wish I could say that I always manage things well, but I have bad moments - moments of anger and frustration. So this month has not been without it's tears and four letter words. Patrick retains his sense of humor and seems to try to make light of the situations at hand. We are adjusting and routines are being adapted to meet the new challenges. It's amazing to me how valuable being able to walk just a few steps can be and I mourn this loss. Some good advice that was given to us when we were remodeling our bathroom is to change the carpet in the bedroom to match the bathroom to make rolling the Hoyer lift easier. I'm so glad we took this advice, it is doubtful I could even move the lift on carpet.

Back in the late 90's there was a "mock" commencement speech written by Mary Schmich that was later put to music called "Everybody is Free (to wear sunscreen) - I really liked it in my 30's and now that I'm "middle-aged" I appreciate it all the more. It's really worth a read, here is the stanza I've thought of a lot lately:

Enjoy your body, use it every way you can
Don't be afraid of it or what other people think of it
It's the greatest instrument you'll ever own

It is truly remarkable how the human body works and such a loss when things don't work right. So I agree, it is the greatest instrument you'll ever own.

Speech
Likely the most significant change that you would notice in Patrick over the past few months is his speech. It is slower and more difficult to understand. This is tremendously frustrating for Patrick and although most of my stress over the past couple months involves the Hoyer lift, his stress is more connected with his ability to effectively communicate.

As with all ALS symptoms when he's tired or stressed he becomes more symptomatic. So in the morning his speech is probably 90% understandable but late in the day when he's fatigued it is more in the 70% range. If I were to describe how he sounds he's quite a bit more nasally and slower. In society today we talk very quickly and anticipate what is going to be said by the speaker. I think this compounds his challenges in communicating. I see these traits in myself and when I'm thinking about them consciously, I try to pause and relax to hear what is being said. I'd like to say that I understand him best, but I think that award would be given to Caitlin. She often knows what he says even when I'm not sure. Caitlin is an introvert so I guess that doesn't mean she's not listening, instead perhaps she hears more than most.



Patrick and Mary Johnson, Speech Therapist

We are looking at various communication devices for use in the future. Mary Johnson, an ALS Speech Therapist, is working with Patrick to consider options. She is quite knowledgeable and very open to different technologies. The ALS Association received a speech grant and with the funds has been holding seminars for ALS patients to introduce them to different devices. At one of these workshops, Patrick was able to try a gyro mouse and borrow it for a period of time at home to see if it worked for him. The gyro mouse connects to your glasses and allows you to move the computer mouse by head movement. This has made working on the computer easier which allows him to surf the web, answer emails and use a computer speech device (when the time comes).

The good news this month is that the Steve Gleason Act was passed by both houses of Congress and is headed to the President's desk where he is expect to sign it. This act allows access to communication devices through Medicare and Medicaid for ALS patients and others with neurological disorders. It is wonderful to see such an important bill move quickly through the Congress with bi-partisan support! This will open options for Patrick and many other ALS patients that are having speech difficulties.

Blood Clots and ERs
With limited mobility issues arise, we spent an evening in the Emergency Room (ER) last week when Patrick complained about pain in his arm that initially he thought was just a bruise. We couldn't figure out how he might have bruised it, but with our recent Hoyer Lift usage I thought it was possible that it happened during one of his transfers. Over the next couple days, the pain moved throughout his lower arm and it began to swell. Seeing that it was Saturday, we headed to Sutter Urgent Care to get it checked out. They were very quick to see him, but recommended that he go to the ER because he needed an ultrasound and blood draw to rule out the likely cause of a blood clot and they could not provide those services. The ER is one of my least favorite places, but we all spend time there sooner or later. A suggestion when you head to the ER - take a list of all the medications the patient is on and their daily dosage. I must have given this list to three different people in the ER, fortunately I made them return the original.

We wound up spending about four hours in the ER - which honestly isn't bad. There were others that were in the waiting room when we arrived and were still there when we left. The outcome of the tests was that Patrick had a superficial blood clot in his arm. There was some discussion about whether or not to put him on a blood thinner or just aspirin to get rid of the clot. Apparently, blood clots are not common in the ER (according to the doctor) so he spent a considerable amount of time discussing options and trying to decide what to recommend.

We left with a number of prescriptions including one for a blood thinner medication. The next morning I took the prescriptions to Walgreens (Foothills and Baseline). When I returned to pick up the medication I was asked if I wanted to speak with the pharmacist - I said "no, I'm good," but Jim Miller, the Pharmacist came rushing out to speak to me. He was concerned about the exceptionally high dosage of the blood thinner medication and wanted me to speak with the doctor for clarification. We discussed the medication with Patrick's regular doctor, Dr. Kevin Fujikawa (highly recommend) and he agreed with the pharmacist that the dosage was high for a superficial clot. This is not the first time the pharmacist at Walgreen's has questioned a prescription and he was correct both times. When you take a lot of different medications it's nice to know that the pharmacist spends time reviewing and making sure they are correct.

Patrick did a bit of research on the web about ALS and blood clots. He found that due to lack of mobility, blood clots are common in ALS patients. They can be quite serious if they are in a deep vein. So, Patrick will be taking a daily aspirin to help combat this problem in the future. It reminds me that we are built to move and there are problems when the body becomes less mobile. I'm sure there will be more of these challenges ahead but hopefully we are smarter - at least about blood clots.

Hope you are well and enjoying the summer. Patrick and Jake take the lift down together each morning... - it always gives me a chuckle...

Jake Getting on the Lift

Jake Curled in the Corner