Patrick and Caitlin

"ALS is a family disease" was one of the first things said to us after Patrick's diagnosis. This could not be more true. It impacts everyone and those of us who live with a PALS (patient with ALS) spend every day working to make the best for our loved one and ourselves. For our family, the challenges are ever changing and everyone manages to the best of their abilities.

Girl Scout Halloween Party

We knew the news would be difficult for our daughters and especially difficult for the younger daughter that still lived at home. The impact of daily living with a PALS can be challenging and somewhat frustrating. The tasks that the person use to do, they can no longer do and they have needs on a regular basis that take priority. Not to mention you are watching someone you love slowly lose their mobility and require more technology for daily living.

I don't know what it's like to watch your father decline with ALS, so I can't speak for either Caitlin or Corrinne, but it must be incredibly painful. Caitlin and Corrinne have different relationships with their dad, partially because Caitlin still lives at home and partially because they are different people. This blog is about Caitlin and Patrick because to write about the two daughters together in one blog just doesn't work - their relationships are quite different, so I'll save Corrinne for a later post.

Patrick and Caitlin have an interesting relationship, over the past couple years it has changed, and evolved. Prior to the ALS diagnosis they had a good relationship, but I wouldn't say they were close. Patrick worked quite a lot of hours throughout the week and Caitlin had her activities. I think it was a pretty typical "teenage daughter-father" relationship. He was proud of her accomplishments and supportive of her activities but finding time was challenging.

Patrick and Caitlin on the Sundial Bridge

I don't know what it would be like to hear at 17 that my dad had a terminal disease, but that's when Caitlin got the news. It's pretty heavy news to deal with at such a young age. One of our first conversations after Patrick's diagnosis was what we wanted for Caitlin. She was in her senior year of high school and planning on attending Sierra College in the fall. We both agreed that whatever came that it was important for Caitlin's life to remain as "normal" as possible. Now 3 years later, I don't know that her life is "normal" - I do know that her living at home is a blessing for both Patrick and I.

This is not the first health problems Caitlin has faced. She was diagnosed with epilepsy at 16, after having her first seizure on a plane leaving Baltimore, Maryland. Just for the record, they will put the plane down if someone has a seizure. It ranks as one of the scariest moments of my life. For a person with epilepsy they don't remember the seizure, but I remember it as if it were yesterday. Epilepsy, like ALS, is a journey and they don't really know what causes it, fortunately in Caitlin's case, it is controlled by medication and she's been seizure free for over three years.

At 20, Caitlin's life experiences are quite a bit different than mine at the same age. As a parent, I wish things were different, but we don't get to chose what is presented to us, only how we manage it. It's just a lot to ask of someone so young.

Dorks

I suspect they might disagree with this statement, but in my opinion Patrick and Caitlin have similar personalities (Corrinne is probably more like me). They are both smart, driven to "figuring out how things work," troubleshooters, and a little opinionated. If you've been in my house, you know that my home is quite "automated." The television is attached to a computer and all the computers are networked together. You can change the thermostat in our home through the Internet and we have an extensive movie library that can be accessed through the television. This is not my area of expertise. Patrick has always kept the technology running and my job was to complain when things simply didn't work - I took my job seriously.

As you would suspect I don't make a very good "fixer," - working on technology is a bit boring and frustrating for me. There is nothing I hate more than a "trip to Fry's" to buy computer stuff. So Patrick and I being a "partnership" for the household technology never really works out. Someone gets cranky and its usually me.

So over the past two years, Caitlin has developed a respect for Patrick's extensive technical knowledge and Patrick has come to collaborate with her on hard drive replacements, pairing devices and troubleshooting problems. I have to say it didn't start off pleasantly and the bond was originally forged because of a joint complaint about the television. However, this has been one of the those unexpected wonders because they now do "projects" together to fix different issues in the house. Some of these projects will take hours to accomplish and for me its pretty wonderful to watch the two of them having serious technical discussions.

I don't know if we've succeeded in Caitlin's life remaining normal, but I don't think Caitlin will ever look back and think it was a waste of time to spend these moments with her dad. If I'm honest I wish I would have had more of these moments with mine - most of us don't get a wake up call saying that we need to spend time with a loved one before its too late.

So, a small silver lining in the ALS journey is that we are given time, time to get to know our dad or develop new relationships or reconcile past ills. I know that Caitlin will go away to college, she's currently looking at various schools. But right now she and her dad get to work together to solve the household technology issues, collaborate on "interesting" new technology options and appreciate each other's time. And I get to watch with wonder as the relationship changes and grows.

If you still are fortunate to have your dad, give him a hug, share a laugh or fix the Internet streaming issue on your television :-) - the time is worth it!

As always, I hope all is well with you and yours! Oh and to all those dads out there - Happy Father's Day!

Managing Anger

"I find myself being more angry of late, not at my husband, just angry," this was a comment at ALS support group this month. It opened an interesting discussion on anger. In my opinion it is was one of the healthiest discussion we've had over the past couple years. I've had moments of anger since the onset of Patrick's diagnosis. It comes and goes like an old friend. This anger manifests itself in a variety of ways - I'd like to say that I always know in the moment what the trigger is, but not always. One of the caregivers mentioned that their nerves are a lot closer to the surface, I think that is a good description.

Now before I proceed, let's define anger because we tend to see it as negative. Firstly, anger is an emotion not an action. It often calls us to take action - to fight injustice, to force a change or demand to be heard. In fact most major changes started because someone got angry. Our country was founded because people got tired of unfair taxation and demanded that they be heard. With ALS, this is a difficult emotion because the disease itself feels so hopeless. As a caregiver it is imperative to find an outlet for these feelings or the body will stress making it susceptible to illness (illness is not a luxury a caregiver can afford). I have various outlets, writing this blog is my "call to action"  hoping that I can bring awareness to ALS and the courageous families that are managing with it every day.

Sometimes anger manifests itself in strange ways and often I don't realize my "overreaction" to something until I reflect back. Over the past year I've developed a dysfunctional relationship with Panera Bread. Yes, Panera Bread. I am a regular customer at Panera Bread - they make great bagels and every Tuesday is "Bagel Day" where you can purchase a baker's dozen for $6.99. I love bagel day! I buy my bagels and eat them over the next few weeks then head back to Panera for more. Unfortunately, I've also found that often when I get home, my bagels are cut all kinds of ways... I prefer my bagels to be evenly cut down the middle. Yep, this makes me angry, but I've "blown it off" for months until recently when I added a cookie to my bagel order only to find when I got home, that they forgot to put it in the bag. Well, this was the final straw, I sent an email to Panera Bread demanding that I be given my cookie only to receive a "computer generated" email apologizing for the mistake and asking if there was anything that they could do. So my response email wasn't too nice - I think it started with... "Uh, duh I want my cookie."

The movie "John Wick" came out on video a couple months back and I couldn't wait to see it. I read the description and was super intrigued with the plot. It's about guy who was a mob killer that got out because he fell in love. His wife dies and leaves him a dog "to love." Super sweet huh, well that's just the first five minutes. The rest of the movie is about John getting revenge because due to a series of events his dog is murdered. So, we watched the movie and I loved it. For those who know me, this is not a typical "Cheryl" movie, I enjoy a good action movie but I have a hard time with violence. I must have surprised Patrick because the next morning, he looked at me and said "I looked up 'John Wick' - did you know he killed 84 people in that film." So, I guess it appealed to the angry Cheryl.

Many of the caregivers at support group told similar stories. Don't be afraid, we're actually a pretty decent bunch of folks. The discussion touched me because it was a reminder that we are all human and it's ok to have feelings. We deny feelings of anger because it's uncomfortable, but in truth it is part of the grieving process (remember the five stages of grief). The ALS journey is not an easy one and the loss along the way is profound.

So, I accept that I have moments of anger, just like I have moments of happiness and sadness. I work to find positive outlets for this emotion, at the same time recognizing that it is all part of the human experience. I'm learning to recognize these moments - pause before sending emails, not saying the first thing that comes to my mind etc. etc. But I must confess I'm looking forward to the next "John Wick" sequel, not sure who he's avenging whether it's canine or human but I'm sure it will be good.

Notes on Life #7

It's been about six months since the last "Notes on Life" post. The winter has come and quickly retreated, sadly leaving us with very little rain. It's been a series of up and downs with some celebrations and some sorrow. This journey is exhausting at times and I find myself struggling to pause and appreciate the now. Writing the occasional "Notes on Life" is a diary to keep track of the events, people and experiences that happen throughout this time. Perhaps someday our great grandchildren will know us... from these posts.

Loss of a Fellow Traveler, Steve Bellino

Dara and Steve

We recently suffered a great loss in our ALS family with the passing of Steve Bellino. Although Steve had ALS, his death came as a shock to us. Steve was still going strong, very active personally and with the Association. We saw him at the March support group meeting and he had just returned from a trip to the East Coast (yep, he travelled there during this year's crazy winter). He and his wife, Dara were headed out after the meeting to get their new puppy. My last memory of Steve was his excitement for the new addition. We got the news a couple weeks later, apparently he started feeling ill the day after support group.

We met Steve and Dara at the ALS support group, but we heard the name Bellino before that because Team Bellino was a fierce competitor at the ALS Walk. Yeah, we all take the walk pretty seriously - both in good fun and to help raise funds for the Sacramento ALS Association, which supports all of us along this journey.

Steve's 100th Anniversary Harley

Funerals aren't fun, anyone who thinks otherwise is crazy. But, they do help with the grieving process and provide strength to those left behind. We went to Steve's viewing to support our friend Dara and celebrate Steve's life. Dara always makes everyone feel special, she introduced us to Steve's family who had travelled in from all parts of the country. Steve was a veteran, former police officer and Harley rider. His cousin, Paul sat out in front with Steve's Harley - a 100th anniversary special. He chatted about all the additions Steve made to the bike, which were many and Steve getting "Dara's approval" to buy it.

Steve had a rich wonderful life - I know this because of the people he leaves behind. This includes Raegan, his granddaughter that entered into this world a few hours after Steve departed. Dara says they crossed souls - I think she is right. So he lives on through all of them and I know he watches over them. He will be missed.

Cemeteries, Gravestones and Family
When you spend a bit of time working on your family tree. You use a variety of resources to track down your ancestors; census, birth, marriage and death records along with tombstones, and family bibles. A number of years ago Patrick and I visited the Fairmount Cemetery in Denver, Colorado. A number of Timmons, Kirwans and Durands are buried there, all ancestors of Patrick.

One grave we were unable to locate was Jacob Ernest Timmons, Patrick's grandfather. After much looking and finally double checking with the office we found out that although he is buried in Fairmount, a headstone was never added to his grave. This has always bothered both of us and over the past few months we've been working with Fairmount to add a headstone to his grave site. We selected a headstone and when the weather warms up in Denver it will be installed.

The Oak Tree

We spent time over the past few months considering our own burial location and purchased plots with the Roseville Cemetery District. It's a nice spot with a large oak tree for shade. We met some of the neighbors and they seemed nice. Not the dead, but some of the living (although, I'm sure the dead are pleasant also). To my surprise there are folks that visit their loved ones on a regular basis at the cemetery. They come and clean the headstone, trim the rose bushes and talk with others left behind. Some bring lawn chairs and settle in for the day and others simply stop by for a chat. I was a little taken back by this initially, but after thinking about it, I understand. I believe that we never lose the connection to those we've lost, instead they are always around us. Places make these connections feel stronger, so hanging out at the cemetery can be comforting.

Visits from Family

Denise and Mike

We've enjoyed visits from family over the past few months. My sister, Denise and her husband Mike came out from Phoenix and we celebrated a late Thanksgiving. While they were out, we went to the Winter Wonderland Event at Cal Expo. Winter Wonderland is a light show featuring various locations around the world. It was quite entertaining with artificial snow falling, a kid's ride area and Santa himself.



Patrick and Sean

Patrick's brother, Sean, and his family, Debbie, Robyn and Brent came out to visit during Spring Break. We had such a great time reminiscing with them. Jake the dog, probably would have headed back to Denver with them, had he been given the opportunity. Sean brought with him a huge bag of old photos, to Patrick's delight!

We are reminded that we are blessed with great family and enjoyed seeing everyone!

Disneyland
We took off in March to the happiest place on earth, Disneyland.

There were many preparations that must take place prior to traveling for an ALS patient. I worked with Disney's Grand Californian to assure that the handicap room worked for us. Although we are so blessed to have the ADA requirements for disabled people in this country, the requirements are general rules and don't work for all disabilities. One of the ADA requirements is that the bed be lower than a regular bed. This allows easier transfer for many from bed to wheelchair. Unfortunately, for us the opposite is true, we need a regular height bed so Patrick can stand and transfer. So, I spent time working with the hotel to have the mattress switched to a regular height.

We are also thankful to the Orange County ALS Association that delivered to us a couple of items including a shower chair to use during the trip. This was done at no charge to us and they dropped and picked up the equipment right at the hotel. Just a plug for the ALS Association, your donations really do matter!

We took the family and spent four days in Disneyland and California Adventure parks. It's always wonderful to watch the kids have such a good time. I've been told by both Anthony and Christian that they would be willing to live there permanently - a tremendous sacrifice for them both:).

Patrick and I Waiting for Dole Whips!

All of Us - Justin and Sofia Hiding in Back!

Patrick, Sofia and Corrinne

Visiting with Oswald the Rabbit

Patrick and his Daughters

Team Timmons
Our Walk Team is already registered for the October Walk and we hope that you will join us! It's October 3rd at Raley Field in Sacramento. The Walk is always a good time with cool t-shirts, good company and a little exercise. Here is the link to our Team Timmons webpage:   TeamTimmons                                                                                                                             
A big thank you to Tina Ratto who is promoting the walk at Blue Shield of CA.

Odds and Ends
For Christmas, Patrick bought Anthony an Erector Set and Christian a Batman Lego Set. Both of the boys spent an afternoon with us working on their sets. It's a trio job with Patrick providing the overseeing, Caitlin helping with the handy work and each boy putting together their projects.

Anthony

Caitlin, Christian and Patrick

Lots of Birthdays over the past six months: Anthony is 10, Corrinne is 31, Christian is 7, Caitlin is 20, Sofia is 2 and I'm a whopping 48. Here are photos from some of the birthday celebrations:

Anthony is 10!

Christian is 7!



Caitlin is 20!

Sofia is 2!

I'll leave you with one of my sister's recent quotes and it seems fitting in this moment: "Each friend represents a world in us, a world possibly not born until they arrive and it is only by this meeting that a new world is born" - Anais Nin

How's Patrick Doing #6

Time continues forward and it's now been over two years since Patrick's diagnosis. The progression is relentless, with ALS, time is not your friend. It's been a while since I wrote a "how is Patrick doing" blog - seven months to be exact. As with all my blogs, I stress to you that our ALS journey is closely intertwined, but I'm not the ALS patient. My observations are just that "observations." My caveat is that I don't post blogs without Patrick reviewing and making any changes he deems necessary.

I'd love to say that there has been no changes in the past seven months but that wouldn't be true. Writing these blogs are difficult, primarily because they force me to consider what changes have occurred and where we are in this journey. I don't think often about how far we've come, I find the this line of thinking depressing, so I stick to the here and now and contemplate the future. I completely appreciate being in "denial" - it's a really warm, fuzzy and comforting place, but in the ALS world, denial for any length of time will create tremendous hardships. So, for most of the time I try to stay in the "now" and prepare to face challenges and changes as they occur.

The easiest way to consider the ALS progression is to look at the various areas affected by the disease. At this point ALS has impacted most regions of Patrick's body - some worse than others. The initial onset area of his hands being the worst and the bulbar region being the best.

Bulbar Changes
The term "bulbar" is used quite often by ALS medical professionals. Until Patrick's diagnosis, I don't think I'd ever heard the term, "bulbar" with regards to ALS. "Bulbar" refers to the region of the body that includes the head and torso. The bulbar region involves primarily swallowing, speaking, and breathing. This is the most critical part of the body and ultimately why ALS is a terminal disease; we have to eat and breath to live.

Patrick's breathing is down from over 100% in December 2013 to 70-80% (two different tests) this past week, from a clinic standpoint he is bordering on "normal range." He doesn't seem to notice much difference, but he has started using a breathing machine at night to help while he sleeps. Breathing tends to be more difficult when you lay on your back so the machine helps throughout the night.

There are various mechanical devices available to help with breathing and as he progresses he will need to consider these options. Currently, the discussion at his clinic appointments revolve around considering a surgery that that will implant a diaphragm pacing system (DPS). The DPS stimulates the diaphragm muscles with electrical impulses. These impulses help the diaphragm with the patients breathing. The DPS has been implanted for a number of years and was approved by the FDA in 2011. Here is a link to the FDA information.

At this point, I'm happy to report that his breathing is too good to have this surgery. But we know that the progression continues and eventually he will need to decide whether to get the DPS implant.

I'm not aware of any debate on the DPS system for easing breathing comfort, but there is debate on whether it extends the life of an ALS patient. The FDA does not require the same trial studies for mechanical devices as it does for drug approval. The ALS medical community has some concerns over the claims the device manufacturer makes in extending an ALS patients life expectancy. The Forbes Norris ALS Clinic, where Patrick is a patient, is doing a trial study on the pacing system. He does not have to join the study to get the implant since it is already FDA approved but it is still a consideration. He is now deciding whether or not to get the DPS system or joining the study and allowing the study to determine whether he gets the system (2/3 get the DPS System Implanted, 1/3 do not).

Speech
If you've seen Patrick lately you know that his speech has been impacted by the disease. Over the past few months we've seen a significant decline in his speech. The words come out slowly and occasionally he needs to repeat words for understanding. We are working with a local speech therapist to consider what technology to use to augment his ability to communicate.

At the beginning of the ALS journey Patrick did "voice banking." Voice banking is recording 1,000s of phrases and words, so that the voice you hear through the electronic device is your own instead of a mechanical one. The clinic encourages patients to voice bank early in their diagnosis while their voice is strong to be used later if the ALS patient loses their ability to speak. Here is an article on voice banking.

There are a couple of different devices available for speaking and we are just in the beginning stages of looking at them. Sadly, there have been some drastic changes with Medicare coverage in the case of speech devices. In the past, Medicare covered the cost of a speech device on a monthly rental basis. The patient used it to speak, respond to emails and surf the Internet through eye movements. Medicare recently changed this benefit and is "locking down" some of the features on the device such as email and Internet. Sadly, Medicare is not even allowing the patient to pay for this features to be unlocked. ALSA and others are battling this decision on a federal level and there is a bill going through Congress that would revise this decision, but even that bill is controversial in the ALS community. The wheels of change in government move slowly, but Patrick's ALS progression does not. So, we will make a decision based on the way things are and hope things change in the future.

If you've read my past blogs you know that ALS is an expensive disease. The cost of these speech augmented computers are over $10,000. At this point we are looking at alternatives and I'll keep you posted.

Mobility
Patrick's mobility is limited. His hands, where his ALS started, are greatly impacted. The left hand is better than the right and he uses one finger on his left to click the mouse on the computer. His hands become fatigued so any extended time on the computer is difficult. At this point, emailing, texting or Facebook posts are 98% of the time done by me, so don't send him anything you don't want his wife to see:) Eating, dressing, showering, brushing teeth, etc. etc. all require help at this stage in the journey.

His legs are impacted but still allow him to stand and move a few feet which helps to transfer or stand over the sink. He is able to control his power chair with a "T" shaped control that moves by rolling the hand back and forth. Many ALS patients opt for a joystick type device which for him would not be usable. In the future, he will likely be set up to use his head to control his power chair. The technology of today is amazing and has made our lives much easier.

Odds and Ends
There are other symptoms of ALS, which are common among ALS patients but because they seem trivial in comparison to other challenges are often ignored. I'm constantly applying moisturizer to Patrick's skin, his skin has changed drastically which makes him itchy and blotchy. After mentioning this to an ALS neurologist he said "yeah, that is common among ALS patients." For someone who can't "itch" when necessary - the skin irritation can be quite annoying.

Recently, Patrick also complained after yawning that his tears were burning his eyes. Apparently this too is an ALS symptom. ALS is a strange disease.

The Decisions on this Journey are Personal
As we move forward in this journey, I think it is important to acknowledge the decision making process with ALS. There is no cure for ALS, but there are mechanical interventions a patient can choose to prolong their lives. These decisions are personal and an ALS patient considers these options based on their own quality of life, personal beliefs and religion. Patients can chose absolutely no mechanical interventions (from feeding tubes to tracheotomy), utilize all interventions available and frankly everything in between. There are no wrong or right answers.

I have tremendous respect for ALS patients making these decisions, they are not easy. I have one recommendation to you, don't be a passive participant, we often don't like uncomfortable conversations so we avoid them. I recommend that you put together a will that includes medical directives and end of life decisions. Select someone close to you to be your voice. Make sure your love ones know what you want, don't leave them to "figure it out" or you may find decisions made for you that are not of your choosing.

And So it Goes
Throughout this journey, our life continues; we have good days and bad days like everyone else. We continue to find the joy in the day and often simple things make us laugh. Patrick is his usual self with his sense of humor intact.

I'll leave you with a smile, here is Patrick and Jake... They ride the lift together, and fight over the same blanket on the couch. Patrick says Jake is worth his weight in gold...

Blessing and A Curse

As time continues to move forward, so does the need for increased mechanical devices to help with Patrick's care. There is no magic pill for ALS, but there are many gadgets, mechanical devices and technologies that help with care and symptom management as the disease progresses. The mechanical additions generally make things easier, but come with an emotional cost. They are a kind of benchmark in the ALS journey. A reminder that you have now progressed to a certain point, it's a difficult psychological game. Additionally, for a caregiver, these devices come with new responsibilities, instructions and "a learning curve."

To be honest, the past few holiday seasons have been difficult with my father's death last year and Patrick's diagnosis a few days before Christmas the year prior. This year I hoped to have an "ALS free" Christmas, and I attempted to accomplish this by putting off the delivery of a Hoyer lift until after Christmas. Unfortunately, it just wasn't meant to be and Christmas Eve I received a call from the SuperHealth Company that a brand new Trilogy Ventilator was set to be delivered to us and whether we could fit them in that day. No, I told them, we'll take it next week and it was scheduled for New Year's Eve instead. It was at this point that I realized the ridiculousness of an ALS free holiday, frankly ALS is a part of our daily lives and no amount of wishing will change that fact.

On New Year's Eve, the respiratory therapist brought our latest piece of equipment, the Trilogy Ventilator.  The therapist was quite helpful and provided over two hours of instruction and set up for the ventilator. I'd be lying if I said I was thrilled with the new responsibilities around the ventilator. After the therapist left I had the feeling of "deer in headlights." With each new device comes new responsibilities; including operational, cleaning and coordination of supplies. This tagged on to a realization that we are now starting a new stage of ALS disease progression and I'm overwhelmed. This is my side of the equation, I can only imagine Patrick's side when these additions come through the door.



Trilogy Ventilator

Patrick needs the ventilator to help with his breathing overnight. The first night, Patrick opted for not using his new ventilator and we put it off for the evening. This is our typical MO, we stare at the equipment for a few days before actually starting to use it. It's the psychological piece, if you leave something in your house for a period of time in the same location, it starts to become part of the furniture or perhaps you develop a certain level of acceptance, either way the stress level goes down and it becomes part of your daily routine.

ALS requires many mechanical devices for daily living. We have a power chair, electronic lift, hoyer lift, ventilator and shower chair to name a few. I will say I am grateful to live in this time and not the time of Lou Gehrig. Although, my preference would be to "cure this awful disease," there have been tremendous advances in mechanical medical supplies since Lou's time. I often wonder how caregivers and patients managed. Wikipedia has an interesting section on wheelchairs with photos of antique chairs; these must have been so "wonderful" (sarcasm)! Here is the link: http://en.wikipedia.org/wiki/Wheelchair: 

The other challenge with mechanical devices is that not all are covered by Medicare or health insurance. This is one of the reasons you see such a huge price tag attached to the care of an ALS patient. If you remember from past blogs, we renovated our bathroom, purchased a power chair accessible van and added a lift to our home. None of these things were covered by insurance and we continue to use our savings and retirement funds for these items. I must say that I am grateful that we are able to afford these things because many people can not. I believe that there should be a consideration with Medicare and health insurance plans to cover these types of expenses. Frankly, as a terminal disease, for a health insurance company, ALS is pretty inexpensive in regards to claims. The cost of Patrick's claims are four clinic appointments a year, medications for symptom management and a ventilator machine.

Loaned Shower Chair

We were fortunate in December, to borrow a shower chair from the ALS Association loan closet. The loan closet has been a tremendous blessing for us and we've used it for a variety of items including a shower chair, walker and scooter. But with the loan closet, you are at the mercy of what is available at the time. With the shower chair though, we really lucked out because the cost of the shower chair we borrowed is about $3,000. One of the greatest challenges with caring for an ALS patient is showering and this chair has made it easier and safer.

We live in the electronic age with gadgets, mechanical devices and technology. Sometimes I'm not sure if it's a blessing or a curse, but it does make life easier for providing care. For an ALS patient living in this time period versus an earlier period, such as Lou Gehrig's (late 1930's), has it's advantages. I know in our ALS journey there are still mechanical additions to make and we will adjust as we have in the past; with a little grace and a little kicking and screaming!

Hope all is well in your world. My sister has taken to texting me a quote a day, which I really enjoy, so I leave you with this thought:

"Our greatest foes - and whom we must chiefly combat - are within" - Miguel de Cervantes

Grandchildren and ALS

I was blessed as a child to live within a couple miles of my grandparents home in Susanville CA. With my buddy, Suzie Miller, who lived next door, we would walk uptown always making a stop at my grandparents house for cookies and milk. The world was a little different back then and we had more freedom than children do these days.

Patrick and I have four wonderful grandchildren (Anthony, 10, Christian 6 11/12, Sofia 1 9/12 and Elizabeth 6/12) that live within the same distance as I did to mine growing up. Although, I doubt they'll ever be able to walk over for milk and cookies we still see them on a regular basis.

They are funny to be around and make us laugh with the way they see the world. So how do you explain ALS to a young child? With the initial diagnosis, our daughter Corrinne, spent a considerable amount of time trying to decide how to, how much and when to tell them. At that point she only had Christian and Anthony and they were 8 and 5.

When you are first hit with an ALS diagnosis, it's difficult to manage, so initially time is necessary to gather yourself and think through your own feelings. At this point you're still trying to figure out what ALS is and what the diagnosis means. Generally, with ALS you do have time to ponder - there is no surgery or treatment to start, the progression doesn't happen over night and grandpa won't look any different a couple days later. So, Corrinne took her time before telling the boys, she and I had a number of conversations and she told them a couple months after his diagnosis.

When my grandmother died, Corrinne was about 8 years old. This was quite difficult for me and a tremendous loss. At the time I didn't understand it but Corrinne would ask questions about my grandmother's death for a number of years after her passing. It was not my favorite conversation as it seemed to tear open a wound that I found painful. Fortunately, I read an article about children and grief and it described how children can only understand grief to the extent that their brain is developed, so it's common for them to ask questions as they get older based on their level of comprehension. This was certainly true with Corrinne and it helped me to see it from her perspective and help her through the process of grieving.

I think the boys understanding of ALS with its losses and changes is similar to Corrinne's in the journey of understanding. They comprehend as they go and manage information to the extent that they can based on their own development. The initial news was quite painful for Anthony, he cried and asked quite a few questions on ALS and what would happen to grandpa. Christian had less of an understanding due to his age, but still understood that the news was not good.

Let's be honest, ALS is a weird disease, even from my perspective I don't fully understand some of the symptoms and challenges that Patrick faces. I am just an observer. I know the boys don't totally understand things either. When the lift was installed, Christian asked why can't grandpa take the stairs. I don't remember the explanation we gave him, but I suspect it wasn't sufficient because in an effort to be helpful he decided to show grandpa how to go up the stairs. "See grandpa, just put one foot on each step." Justin whispered to Patrick - you can slap him anytime you want. Which gave us all a good chuckle.

Patrick used special silverware to feed himself for quite a while and we had two sets. At every Sunday dinner, the boys would fight over who got to use the second set - they were cool and different. It's the perspective of a child. At Christmas dinner this year Anthony and Christian both wanted to use the special sets for dinner. At dinner Anthony realized that grandpa wasn't using them anymore, and asked why isn't grandpa using them. We explained that grandpa can't use his hands for eating anymore - a well of tears filled in his eyes. The realization of the loss and ALS progression hit him in that moment and it was quite sad to see his face acknowledge the understanding. 

We took the boys out for clothes shopping recently- it was one of our Christmas gifts to them. Since they go to a school that has uniforms - buying clothes is pretty straight forward but we always make the event fun going to the mall, letting them select a shirt of their choice to wear at home and going to dinner. They both selected a funny sweatshirt... and we went to one of their favorite dinner places, Black Bear Diner.

On this outing, I started teaching them how to latch grandpa's chair down in the van and Patrick has them push the buttons on his chair when he needs assistance. They like to be helpful and Anthony and Christian both expressed pride in helping grandpa.

I think the outing got Christian thinking because at dinner he said, "I remember when mom told me grandpa had ALS, I went to my room and cried all day. I'm sorry you have ALS grandpa." It really came out of the blue, but in hindsight I think it was his observation of Patrick and being helpful that led him to thinking about it. I wish my grandkids didn't know what ALS was, but they do. I am pleased, however that they are learning compassion, kindness and empathy for others. These are the unexpected gifts of a horrible disease. 

Since the outing was such fun with the boys, I'll leave you with these photos... (a reminder to myself that the world is different from 4ft tall)

Patrick and Anthony

Anthony Bouncing.

Christian Riding his Trusty Steed.

Yes, the one on the left is Anthony.

Best wishes for a happy 2015!

Working with Home Health Agencies

All ALS patients at some point will have help of some kind come into their home. From physical therapists to home health aides, you open your doors to strangers and invite them in. In November at our quarterly appointment with the ALS clinic we discussed needing a couple pieces of equipment, a hoyer lift and a shower/commode chair with wheels. It seemed like such a simple request, but as I've found it never turns out that way.

We were assigned to a local home health agency to come out and evaluate our needs. Why do we go through these channels when you could just go purchase or borrow them from the loan closet? Well, we are hoping that Medicare will cover some of the cost of these two items and as wonderful as the loan closet is, you are limited by what is available. Medical equipment is a huge expense in the ALS world and these two items will likely be in the thousands of dollars. So, we do our best to work within the system.

This may come as a surprise to many of you, but having strangers in my home is stressful for me. I love the company of friends and family, but strangers coming in to "evaluate" our situation are much less welcome. This has caused me a great deal of stress over the past couple weeks. Many of the blogs I've read by ALS caregivers discuss the stress related to loss of privacy. This I can commensurate with and I know that it will not become less in the years to come, but more. So, I'm having to manage my stress level and try not to get angry.

Some of my stress is going to happen regardless of who walks through the front door, but I think there are things that are external and could be better controlled through the home health agency. I don't know how other agencies work so I can only address what has happened in our case. The phone calls started before Thanksgiving, with urgent pleas to see the patient as soon as possible. Why such an urgency, I don't know but they were anxious to get started right away. They let us know that the first appointment would be long and take a couple hours. They were a little off, it actually was about 2 1/2 hours. That's a long time for someone with limited energy.

In the first appointment they spent a considerable time reviewing and entering Patrick's medication into the computer. How this is related to the hoyer lift or shower/commode chair I'm not sure, but they were diligent about it. I thought it was interesting since the ALS clinic and home health agency are both part of the same system so why didn't they already have this information? We watched while all the medications were entered into the system. To be fair they did have some information in the system - some current and some not, but it was quite a bit of time spent gathering that piece together.

After this appointment the phone calls began, they called daily asking for more appointments - both physical therapists and occupational therapists. Even after I explained that we wouldn't be having appointments during the holidays. They kept calling. Additionally, I was very clear that morning appointments are not scheduled, only afternoon. This was a surprise to every person that called. To be honest, my stress and anger with the constant barrage of calls was starting to affect me. So, when I got a call from the original physical therapist who wanted to come out that day and mentioned two appointments already scheduled with another therapist in the following week that I knew nothing about (who makes appointments this way?) I lost it... yeah, I won't repeat the whole conversation, but it was likely not my finest hour, however it felt really good. I'm pretty sure he's afraid of me now.

So here is my list of recommendations to physical therapists, occupational therapists and others that enter my door:

• Knowing a couple people with ALS does NOT make you an expert.
• Disease progression is unique to the individual - it starts in different locations, has different symptoms and progresses at different speeds.
• Don't assume to know - even at clinic with ALS experts, they ask the patient about their challenges.
• Listen to the patient and caregiver. I don't expect you to be an ALS expert, but I do expect you to listen.
• ALS does not impact intelligence, don't patronize the patient because his speech is slow.
• Be realistic in goal setting. An ALS patient is not going to run a marathon in the next few months.
• Energy for an ALS patient is limited; so although you need to assess their physical patterns - do so with the understanding that they will become exhausted quickly. Adapt your usual routine, watch for exhaustion levels and listen to the caregiver/patient.
• We try to schedule only one activity a day. Not because we're lazy, but because that's about as much as Patrick can do comfortably, this way he doesn't overexert himself. So, don't try to schedule multiple appointments in one day.
• Time - As with everyone our time is valuable. Calling the same day and expecting to get an appointment that day, even hours later is NOT ok. Yes, we still have a life outside ALS!
• Work with the ALS Clinic staff, they are experts and can help with questions, concerns and recommendations.

I have to add this caveat, we have found some of the suggestions from these folks helpful. So it's not a complete waste of time. Whether its worth the aggravation is yet to be seen. If we get the equipment we need - I'll say yes.

I hope all is well with you and yours! Happy Holidays!