Obituary, Celebration of Life, and Me

Throughout this journey Patrick did not avoid discussions about end of life decisions, death and what I should and shouldn't do after he died. There were occasional stressful moments where I would say, "no death talk" today. However, I am grateful for the conversations, I knew what he wanted and didn't want, he made his burial arrangements and set up hospice for himself when he felt he was ready. He was truly amazing in how he managed a really crappy diagnosis and I can't imagine what this journey would've been like without his level headed, honest personality.

Obituary
Interestingly, over the past five years he never wrote or asked me to write his obituary. We are big genealogists, so he knew I would write one. This is one of the most important documents we look for when researching our ancestors and there is nothing more exciting than finding a long, detailed obituary of a past great great grandparent. It provides a glimpse of the person and those who loved them.  

Patrick did make one comment to me about a year ago when we were reading a friend's obituary. The obituary stated "he suffered through a long illness." He said, "For God sake Cheryl, don't write that crap in my obituary." He never saw it that way, he wasn't "suffering," he was living. So, I wrote the obituary based on how he lived, not how he died. Here is a link to his obituary, that was published in the Sacramento Bee, 

Patrick's Obituary

Celebration of Life
A Celebration of Life was held Sep 10, 2018 and many wonderful friends and family attended. Miguel Victorino arranged for the Corvette Club to have some vettes in the parking lot along with Patrick's vette. There were stories and memories of Patrick's life shared by friends and family. Grandson Anthony played a couple drum solos for his grandfather - which Patrick would've loved.  After the service we had a reception at his favorite Indian Restaurant, Tandoori Bite. I think he would've enjoyed the event and I know he was there in spirit.

I've been asked for a copy of the speech I gave, "the man in my head" and I decided simply to memorialize it here. These were some of my thoughts at his celebration of life,

"To say an ALS diagnosis is hard on a marriage, is really an understatement – all your plans, thoughts and dreams of the future change and you are forced, like it or not, to live in the moment. But, we were always still just Patrick and Cheryl, with all our wonderful imperfections. So, over the past 5 years we loved, fought, cried and tried to make the best of things. About a year ago, we were arguing about money (they say you argue about 3 things: children, money and sex) well we were arguing about money. I can’t remember the actual topic nor what I said, but his response to me I’ll never forget, he said, “I cannot compete with the man in your head.” 

I’m going to pause for a minute and let you all in on a little Cheryl secret… when I’m mad… I curse like a sailor… so I think my response, was something like “what the hell are you talking about.” And he said it again, “I cannot compete with the man in your head.”

After the second time we both sulked and didn’t talk. The hard thing about being a caregiver, and a wife, is that even when you are arguing, you still have to put him to bed – Ok, I’m sure I wasn’t the person he wanted to take care of him that night either – but there you are.

After he was in bed and asleep, I took my nightly refuge downstairs – I did this every night, many of you probably got emails from me at 1am and there were other caregivers I instant messaged with. Usually, it took me about 30 minutes just to unwind. That night I picked up the computer, still sulking about the “man in your head” comment and decided to write down my thoughts… and the next morning when he was up, I read them to him… and now I’m going to share them with you. When I reopened this, I thought maybe I’ll rework a bit of it. But I changed my mind, I haven’t changed any content, I did, however smooth out some poor grammar… I titled it, The Man in Your Head:

The Man in Your Head…

You said, “I can’t compete with the man in your head.” – I thought about this and decided you’re right.. you can’t compete with the Patrick Timmons in my head. After 34 years of marriage, 2 children, a lifetime of celebrations and losses – you really can’t compete with the Patrick Timmons in my head.

The man in my head held my hand while watching a sonogram of a baby that was no longer alive. And immediately following the D&C procedure, took me over to a car dealership to look for a van because, in your words “we need it for all the children we are going to have.” You insisted that the salesperson show us built in car seats because "we would need them."

The man in my head, dresses up in costumes for Girl Scout Halloween parties, fixes computers for friends and family, builds model railroads, gazes at the stars, and planets and always invites us all to join him.

The man in my head adopted my crazy family as his own. Supporting my parents 50th anniversary party, encouraging me to connect with my mom’s biological family and loving my parents and grandparents as though they were his own.

The man in my head when Chester (our dog) was in his final days slept downstairs to be with him before he passed. He said “he shouldn’t be alone.”

The man in my head walked with crutches to the mall during lunch to buy his daughter the jacket she wanted, even though I had said no. (She was being stubborn and refusing to wear a jacket to school) He simply didn’t want her to be cold.

The man in my head sent flowers throughout the years. And on one anniversary showed up at my work with flowers. Karlin came to find me and said there is a delivery for you. I walked out and there you were – I said “I’ll take the delivery boy too.” She had never met you and looked a bit surprised then realized and laughed.

There are many of these memories– and no, not everything is rosy – I think life is a mix of things – we are imperfect human beings, but if all was negative – trust me I’d have left a long time ago.

So, I’ll keep the man in my head…"

Me

I appreciate all the cards, notes and kind words over the past two months. I'm ok, most of the time. I didn't realize how incredibly self absorbing grief is, but here I am, I've entered a new journey. I feel I'm in an "in between place" where I'm holding on to what was and catching small glimpses at what might be. It's lonely and painful. But, I'm ok. Questions I'm asked regularly in the "what are you going to do now" variety, I don't have answers for. And although, I have a bit of anxiety over where I go from here, I suspect the future will figure itself out and without Patrick will never be the same.

In the same vein, I don't know where the blog goes from here. Maybe this is the last one, maybe I will feel compelled to write something later on, it's hard to say.  I will say this, I appreciate all of the comments and support over the past six years. Patrick and I both always felt the love from family and friends both near and far.

So, thanks for taking the journey with us and all the best to you.

Final Months

Patrick passed away Friday, August 3, 2018. I miss him...

Last Picture: At Elizabeth's 4th Birthday Party - Jul 29

I think it's important for me to share our final months; someday, somewhere, someone will get the awful diagnosis of ALS. They will search the Internet and stumble on our blog. I know this because there were a number of ALS blogs that Patrick and I stumbled on and read. People we never knew, never met, but we were so grateful they shared their stories with us.

To my fellow ALS travelers, know this, there is no road map for this disease and the progression is extremely personal and unique. So, my caution while you read this blog is that you recognize your story will be just that... your story. I've had people tell me, "I know just what you're going through." It's usually someone who means well, but it's not really true. You are unique, your story is unique, and your situation is unique - but you are not alone.

I write this blog, in hindsight without Patrick's review or comments. Although, I will tell you, he rarely changed much just added bits here and there. He was a tremendous grammar and spelling checker - so... it will not be quite as "clean" as you've been use to and this is solely from my perspective.

Respiratory Decline
Over the past year, Patrick's breathing was becoming more labored and the bulbar impact was substantial. The bulbar impact included his face, throat and mouth making it impossible to test his respiratory levels. The way we judged his respiratory decline was simply through his increased dependence on the ventilator. Which, in my opinion, is probably a better test anyway.

He consistently used the ventilator while sleeping for a couple years, but about 18 months ago he started extending the usage into the late morning hours, then a year ago he added a couple hours in the early evening and ultimately he used it about 20 hours a day. He came off to sleep on his side for a couple hours at night, to shower and dress, and to switch masks for using his Tobii (speech device). If he was off the ventilator too long he would start to cough and the clonus and spasticity would set in. Sadly, the noise of the ventilator and facial mask became our normal. We took his ventilator everywhere, including the movies.

The past few months, even while using the ventilator he experienced low oxygen level symptoms, including morning headaches and fuzzy thinking. These are classic symptoms of not getting enough oxygen. He bought a finger tip pulse oximeter a couple years back and would occasionally want to check his oxygen levels. While he was on the ventilator up until about six months ago it would be fairly steady between 92-96. But the last six months it dropped to a normal of around 88-90, so we knew even the ventilator wasn't able to compensate for the respiratory decline.

Bulbar Changes: Secretions and Communication
The bulbar changes had a profound affect on his quality of life. I've back tracked in my mind ways I could've made this less profound, but really it was out my hands. We worked to find ways to compensate for the bulbar impact but in the end ALS was relentless.

We don't realize it, but we are constantly managing the mucus and secretions in our mouths. He lost the ability to do this himself over the past couple years. In March, we started using the cough assist and suction machine regularly to bring the mucus up and remove it from his mouth. The suction machine is similar to what they use at the dental office and the instrument that goes into the mouth is called a yankauer. We did this process 3-4 times a day, primarily in the morning and evening.

The clonus and spasticity that he struggled with throughout this journey moved to his jaw and mouth. This made the ability to use the suction machine difficult and problematic.  Just getting the yankauer in his mouth was tough because his teeth would clamp down. I was always concerned that he'd bite down on the yankauer and break it off and I'd have no way to get out the broken piece. That never happened, but I felt it was a constant possibility. He repeatedly bit his tongue and cheek which became very sore and tender. We tried various mouth guards to combat this issue but they were uncomfortable and he couldn't control the slight shifting. Sadly, when he bit down on his tongue or cheek he often couldn't get his jaw to relax - I would massage his jaw to relax the muscles, but I know it hurt.

Absolutely the saddest bulbar impact was on his already limited ability to communicate. This caused him and me the greatest anguish. He was limited to  making noises to answer yes or no, but not much else. In the last few months, even this ability had severely declined. Our method of a-e-i-o-u, that I've described in previous blogs, was proving difficult because it requires him to affirm the letter selection and with the significant bulbar impact facial movements and noises were quite hard. He continued to use his Tobii (speech generating device) but that was becoming troublesome and it took me often 30 minutes to an hour to get it adjusted just right to where his eyes connected with the computer. Sometimes he stopped and spelled out with his eyes, "I'm done." A few months back he admitted that he was having trouble controlling his eyes and eye lids, our absolute greatest fear was that he would be "locked in" which is a term used to describe someone unable to communicate.

I have to pause here and say to anyone who has an ALS diagnosis, not everyone with ALS has the communication problems that Patrick experienced. In fact, I don't think I ever met anyone that was quite as challenged. I visited with ALS friends this past week, Pete and Lachi, Pete was diagnosed a year prior to Patrick, he speaks and is perfectly understandable. Remember, your journey is your own and some of the challenges of other persons with ALS will never affect you or at least not in the same way or to the same degree.

Hospice
Patrick started hospice in Mid-July, he was not much of a Facebook person, but he wanted to announce it on his page. Here is his post from July 21,

"I want to let family and friends to know that I have made a decision to start hospice in the home. This is a difficult decision to make as their wasn't an event that preceded this decision. It's just another stop in this journey where I need the extra services and medications to make me comfortable. I want to thank everyone for their love, support and prayers for me and my family. It is much appreciated."

He wrote it himself on the Tobii without any help from me, took him over an hour.

Hospice was a tremendous blessing and I would be remiss if I didn't thank the people at Snowline Hospice that helped us through his final month. I have to be honest, I really thought he'd be on hospice for a while, my expectation was that he would live for at least another six months. A reminder to me that these things are beyond our control...

The day after his Facebook post, Patrick woke up feeling sick and vomiting. I still don't know what caused it. The vomiting created a whole host of problems. Firstly, he couldn't use his ventilator while he was vomiting and as the time away from the ventilator increased he complained of his inability to breath. I tried as best I could to clear the vomit out of his mouth but the clonus in his jaw would clamp down making it near impossible.  He eventually stopped vomiting and was able to sleep through the night. In retrospect, he never recovered from that episode.

The following week he seemed to struggle even more with communicating and slept most of the time. He was able to attend Elizabeth's 4th Birthday, but it wiped him out. The hospice nurse told us she didn't think he would make it through the weekend. His final couple days were spent with me, Corrinne, Caitlin and Jake, reminiscing. He died Friday night.

One More Post
I have another blog to complete with Patrick's obituary - a tribute to him. He was so much more than the diagnosis of ALS and the post will be about him. True to his nature he left me a list of notes, "Patrick's Thoughts" he titled it, which included (I'm paraphrasing) move on from ALS, don't dwell there, don't remember me for a disease.

To Corrinne and Caitlin - He will always be with us, remember 

"One bourbon, one scotch and one beer".... thank you George Thorogood for a final moment of laughter.

Corrinne made this lovely announcement for Patrick's Celebration of Life...

Bob

Me, Patrick, Therese & Bob

I've said it before but sometimes in the the worst scenarios you meet the best people. There is an odd connection among ALS families that seems to supersede other differences; age, religion, income levels and yes, even political affiliations (remarkable in today's environment). But we share a life experience that is hard to understand if you a haven't taken the journey. And let me say here without hesitation, I hope you NEVER have to experience this firsthand.

We met Bob and Therese Stansbury, early on this journey at an ALS support group meeting and the connection was immediate. After the first meeting I sent Nancy at the ALS Association a note asking for an email address for "the lady at support group, who is the wife/caregiver for Bob," I couldn't remember her name. Much to my horror Nancy simply forwarded the message to Therese. She sent me a lovely email and didn't mention the fact that I had totally forgotten her name. We've been friends ever since.

Our journeys have spanned over four years.  Bob and Patrick's progression has been quite similar, starting in the hands and progressing to the legs and bulbar region. We were impacted by many of the same challenges, decisions and experiences. So we shared ideas, commiserated together and enjoyed each others company. We joined forces on the Walk to Defeat ALS and combined our teams a few years back. If you attended the walk in recent years, it's likely you met Bob, Therese or Jenna, their daughter.

Jenna, Therese, Bob, Patrick & Caitlin

Sadly, Bob passed away this week. 

Bob had a tremendous sense of humor that continued throughout the journey.  Keeping your sense of humor as ALS progresses is a challenge, but for Bob it never faltered. Patrick and I really enjoyed his company and openness.

The Stansbury's (Oct 2018)

He was committed to his family; Therese, Herb, his father, his brothers and children, Jenna and Matt. Jenna graduated in May from Chico State with a BA degree in Liberal Studies with a minor in Special Education, following her mother's footsteps.  No one could be more proud of his children than Bob. 

Bob grew up in Chico and had three brothers (Bert, Bob, Bill, and Brian). He reminded me of one of the boys I grew up with in Susanville.  He had a down to earth attitude, an easy going personality and a funny sense of humor. He worked in tree care and management for about 35 years and was a licensed arborist. 

He was not one to mince words and said what he thought. Yes, he and Patrick were kindred spirits. They were part of a group that lingered well after support group to share stories and experiences. It was a good group of people and it's sad we all met because of this disease. I believe Bob and Patrick would have been friends even without the ALS connection.

With Chico being home, ALS did not stop Bob and Therese from making regular trips to Sacramento for support group and San Francisco for a clinical trial. They were travelling fools long into this disease. I'm still not sure how they managed to do this for so long. Travelling becomes quite difficult as things progress. Even in the past year they drove to Southern California to visit family. They were a remarkable partnership, staying positive and making things work. ALS is not easy on a marriage so it's impressive when people continue to make it work. 

At support group, both Bob and Therese shared their challenges, offering advice, and being generous with their support and empathy for other ALS patients and families. For years they attended both the Chico and Sacramento support groups. Attending the Chico support group as recently as last month. Bob's absence at these meetings will be sincerely felt.

Our thoughts and prayers are with Therese, Jenna, Matt and family.

           "Some people come into our lives and leave footprints
            on our hearts and we are never ever the same." Flavia Weedn

Bob and Therese

Bob, Heinz and Patrick

Bob, Jenna and Therese

Bob and Patrick

Farewell, old friend.

Show on the Road

I remember my mom saying, "let's get this show on the road," while she attempted to herd us kids out the door. Generally, it was directed at me, I required quite a bit of primping in my youth. I knew by the time this announcement was made my mother was becoming frustrated and it was time to do what she said... and get my show on the road. Never could I have imagined what the show would entail 40 years later. Honestly, we don't go out much. We go to the ALS clinic every three months and the movies once or twice a month and that is generally the extent of our outings. It's much easier if I have someone to help with equipment, tie down belts and open doors. When its just us, it can be done, but its not easy.

The Boys!

We have a house cleaner that comes twice a month and often we head over to see a movie during the time she's working. Before Caitlin headed to college she was our constant movie going companion and it was the three of us heading out. With her going to college in San Francisco, our trio became a duo. Initially, I picked up the slack and we reduce our movie outages to once a month. But, often now our duo is a foursome with our grandsons, Anthony and Christian joining us. We have a standing joke with them that we are going to see "On Golden Pond." Last fall we forgot to tell Corrinne what movie we were taking them to, so in the van driving over Anthony asked "what movie are we going to?" I told him, "Oh, it's an old flick, On Golden Pond with Henry Fonda and Katherine Hepburn." They both got the funniest looks on their faces, but didn't say a word. We actually went to Black Panther. Now we never tell them the movie, and they know it's  "On Golden Pond." Anthony told me, "he loves On Golden Pond it's like a different movie every time." He was surprised recently when I told him that it is an actual movie.

They've settled into their movie going responsibilities with Christian helping with tie downs in the van and carrying the respiratory supplies and Anthony carrying the respirator. The two of them manage doors and occasionally crowd control.  Yes, Patrick uses the respirator during the movie. We frequent Studio Movie Grill and on occasion Blue Oaks Cinema both in Rocklin. I'm sure we are a bit of a spectacle when we come in and get ourselves set up. One of the waiters at Studio Movie, recently said to me, "I remember you guys," then he paused probably thinking he was saying something wrong, "because I remember his bronco blanket, I'm a bronco fan too." I kind of laughed to myself, yeah you remember us because of his blanket. 

Hanging with the Dudes!

I like Studio Movie Grill; the staff are nice, you can buy tickets and reserve your seats online, and the door set up is pretty manageable. The front of the building has a set of wide doors, which works well although it would be great if they actually had disability buttons to open them. But that's ok, the staff and the boys run to get the doors. The doors into the actual theaters are all straight on, with no 90 degree turns and the staff hold open the doors at the beginning and end of the movies. That's probably my greatest complaint about Blue Oaks Cinema their theaters have 90 degree angles when you enter the theaters and no one holds the doors for you. It makes it a bit more tricky especially because the hallways are quite narrow. Yes, on occasion I have run into or scraped walls and doors - power chairs are not as easy as you think.

Bathrooms are another challenge. The best bathrooms are the private handicap ones. These offer a lot of room and privacy. Most public bathrooms, however are large multi-stall same sex bathrooms. This requires that Patrick goes into the woman's bathroom, versus me going into a men's bathroom with urinals. I know Patrick hates this and will wait until we get home if possible. We know where the private bathrooms are located near Studio Movie Grill, there is one at the smoothie place next door and Target in the nearby strip mall. We frequent them if the need arises.

I do have a few thoughts for my fellow movie goers...

Here is what we do for you:

• We go to movies after their opening week and on weekday matinees to avoid crowds.
• We purchase tickets and reserve seats in advance and although I've been told we can "bump" able bodied folks in the disability seating we never have, there are only four disabled seats in each theater.
• We get there early to set up

It would be great, if you could do the following for us:

• When you purchase tickets online try to stay away from the disabled seats and ones nearby - there are only a few and we require four seats next to each other. 
• If you sit in the aisle way please leave room for us to get by in the movie. It's a wide aisle it shouldn't be a problem, but I did have to wake up a man in the middle of a movie because he was stretched out blocking the aisle asleep. He was pretty unhappy with me - just for the record I wasn't thrilled with him either. 
• And as always, grab the door:)

Ironically, probably one of the most difficult buildings to get around in, is the medical building where they have the ALS Clinic. There are a number of doors leading to doors, an elevator with no "hold button", and doors that are exceptionally heavy. The handicap parking is sparse and most locations force you to travel within the parking garage with no walkway. We take almost all of Patrick's equipment to clinic, not just the respirator and supplies. We have a backpack with bathroom stuff, respirator and supplies, and Tobii (speech generating device) with pole.  Yep, it does give new meaning to my mom's saying "let's get the show on the road."

Honestly, it's more fun going to the movies than ALS Clinic. But hey, it's summer time, so maybe we'll see you at the movies!

Walgreen's

Nice Day on the Porch

Every couple weeks I make the trek over to my local Walgreen's. I buy cards, groceries, seasonal goodies and of course, medications. Patrick has a number of prescriptions that help manage his ALS symptoms, everything from muscle cramps to combating the Pseudo Bulbar affect to mucus relief. Many are prescribed but some are over the counter. Walgreen's is convenient with a fairly inexpensive store brand and the option of going inside or through a drive thru (prescription only).

I like Walgreen's. There is generally a note of recognition from the staff when I come in. I've often wondered if I'm part of a group of "regulars" that frequent the store. Over the past few years there has been two main pharmacists, I've had positive experiences with both. I suspect, at least with the current pharmacist, that she knows Patrick has ALS. She always makes a point to pause and smile and say hello. It's nice and it reminds me of my childhood growing up in the small town of Susanville.

Elizabeth and the Chocolate Bunny

I'll bet I know the store as well as the staff. I wander around quite a bit, I especially like the seasonal stuff. I've bought additions to my Christmas decorations, huge chocolate Easter bunnies and valentine's goodies for the grand kids. I got a good deal on a new Christmas dog decoration during the after season sale, I'm excited to put up this year. They even have some of the best cookies I've ever eaten - seasonal wafers. I bought them on a whim. I consider myself a cookie connoisseur so take it from me they were good. I sent a couple bags to my sister, Denise and Caitlin at college. They didn't travel well. Christian when he was over specifically asked for the cookies in the "blue bag." I'm glad they are seasonal because I'd likely buy a bag each time I went in.

Of course, the primary reason I hang out at Walgreen's is for Patrick's medications, our annual out of pocket costs are exorbitant. His most expensive medication is Nuedexta (no generic, yet). When I pick it up, the clerk tells me the price and generally follows up with "do you still want it." My response is always the same, "do I have a choice?" I didn't really think much about this question but I've grown to understand it. The pharmacy staff see people opt out of expensive medications and simply go without on a fairly regular basis, so the question continues, "do you still want it?" I was standing in line one afternoon while the woman at the counter was looking at her various prescriptions and talking with the staff about the costs (she was in the "donut hole" portion of Medicare where the out of pocket portions are high). She opted for taking only two of the three prescriptions, I wondered which one she decided not to buy and my heart went out to her. 

We are not rich, but fortunate that we are able to manage the prescription costs of this disease. I know it bothers Patrick and he's tried at various times to go without a medication to save costs. It doesn't go well. He really does need the medications that are prescribed. We could save a little from mail order purchasing and recently, my sister, Denise referred me to a website that sells medications for a portion of the cost (they are located in Israel). I'm going to check it out, but honestly having a pharmacist we trust manage our medications has been a blessing over the past few years. The pharmacist at Walgreen's reviews our many medications, checks for drug interactions, explains and answers questions, and even one time intervened on a medication dosage that had been prescribed by an overzealous ER doctor. 

Last month Patrick had a bad episode of breathing anxiety. Difficulty in breathing can cause anxiety which has a horrible snowball affect. If you've ever felt anxious about something you know that it causes you to have shortness of breath. So, the reduced breathing function caused by ALS, along with the feeling of being anxious is a scary combination. The doctor prescribed an anti-anxiety medicine commonly used for breathing anxiety. It was late, close to 8:30pm and I ran over to Walgreen's to pick up the medication. When I got there the prescription hadn't been called in, so I waited. Our neurologist was at dinner and didn't call in the prescription until close to 9pm (closing time at Walgreen's). The pharmacist, witnessing my distress, waited until the prescription came in and filled it even though it was after closing time. 

I'll keep you posted on the cost of meds from Israel. For me, it would really have to be a remarkable deal since I doubt I'd get the same level of service. The cost of medications in the US is frankly a mess. The question, "do you still want it" shouldn't be part of the regular pharmacy dialogue, but it is. I'm not hopeful that there be any remarkable changes to the pharmacy costs for patients in the near future - based on your political affiliation I'll let you place blame where you may. 

In the meantime maybe I'll see you at Walgreen's  - if your looking for something I'm sure I can point you in the right direction.

YUMMY!!

Shirley

Shirley (mom) and Patrick

Patrick's mom, Shirley, passed away this week.  It didn't come as a surprise, she had been battling Alzheimer's for over eight years. A tough disease especially for such an outgoing, funny, charismatic lady. The fact that it was not a surprise does not lessen the impact of her loss.

For many years she worked as a waitress on the night shift at both IHOP and Western Sizzlin. Starting her shift at 11pm and working until the early morning - her sleep cycle was always a bit different. She had, what she called her "regulars", folks that came during her shift to chat and share their day. She was friendly, funny and always willing to lend an ear.

She was a "foodie" long before that became a thing. She loved food and was a tremendous cook, who specialized in comfort foods - brisket, potatoes (scalloped, mashed, twice baked), deviled eggs etc. No one went hungry at her house. Her recipes were difficult to follow only because she didn't use measurements, she would say - "oh, you know just add a little of this and a smidge of that." She would often go through her restaurant menu describing items in great detail. While working at IHOP she recommended to Patrick that he try the Country Griddle Pancakes they are delicious. She said the secret ingredient was cream of wheat. This became one of his favorite foods and if you like pancakes I would recommend you give them a try.

To say Shirley was a talker would be an understatement. Shirley's phone calls to Patrick were legendary. He would prepare himself by finding a comfortable spot with ear phones in and emerge a couple hours later. Sadly, these calls are history now, not having received any since her diagnosis. 

Jim, Sean, Patrick, and Shirley

Shirley had three sons, Jim, Patrick and Sean. Jim passed away in 2011 and at a point where she was already battling Alzheimer's disease. Prior to flying out for his funeral, I wondered how much of Jim's death she would understand.  I sat next to her at the funeral she just stared forward without expression. In a moment of clarity, she turned to me and said, "you should never out live your children." Then she just turned back to the front. It was a powerful moment, one I will never forget.

The three brothers were jokesters and their mother was often the victim of their pranks. She was a chronic smoker for years. There are stories of poking holes in the cigarette filters, and replacing tobacco with other substances. Perhaps that is one benefit of her diagnosis, when she was hospitalized after a particularly bad episode she was not allowed to smoke. During this time she forgot about smoking and never smoked again. Occasionally she would mention that she remembered smoking. Sean would respond, "nope, nope, you never smoked." 

Don't feel too sorry for Shirley. She had a great sense of humor and enjoyed the banter with her sons. While we were visiting a few years back, Sean made dinner for everyone at his house. Shirley was living in a residential care home and had been quarreling with another resident over a reclining chair - Shirley had deemed it "her chair." This had prompted a few calls to Sean to help calm Shirley down when she found "her chair" occupied. 

During dinner Sean said, "you know mom there are other chairs to sit in." She responded, "that's what I told her, she doesn't need to sit in my chair." I had to laugh... she had a point, kind of. I'm not sure that Sean was entertained, but it sure made me laugh.

We didn't tell Shirley that Patrick had ALS. That was an easy decision, it would just upset her and the information would soon be forgotten. Why cause her this pain, what would be the point. When we visited her the year Patrick was diagnosed I think she noticed that he didn't walk with his usual ease, but she seemed to disregard it.

Timmons Family 2011

Shirley, along with most of Patrick's extended family, live in the Denver area. This placed the caregiver role on Patrick's brother, Sean and his family over the past years. Sean visited her regularly, delivered soda (or "pop" as Shirley called it), candy and puzzles, which she enjoyed for a few years. He managed any issues that occurred at the home, coordinated with her doctors and hospice staff and was the point person for her care. We owe Sean and his family a debt of gratitude for the many years of care they provided. 

Regardless of the expectation of death, the loss of a parent is never easy. Shirley was a wonderful, free spirited soul. She was loved by all who met her and she could always make you smile. So farewell Shirley, we were blessed to know you. I'm sure you are enjoying a plate of country griddle pancakes with Jim.

Frank, Jim, Patrick and Shirley

Goldie (Shirley's mom), Shirley & Jim

Corrinne, Shirley & Caitlin 

Shirley

How's Patrick Doing? #11 - Part II: Respiratory, Speech and Bulbar Changes

Patrick and Christian

This second part of Patrick's update concerns his respiratory, speech and bulbar region (head & chest). As time progresses, ALS has affected all his muscles; from the ability to move legs and arms to swallowing, speaking and breathing. As I've mentioned before, ALS starts in one of the following places: limb onset (arms or legs), bulbar onset (speech or swallowing) or respiratory onset - most of the statistics I've seen are about 30% Leg, 30% Arms, 30% Bulbar and 10% Respiratory. For Patrick it started in his hands and now affects all the various areas to some degree.  His hands and arms are the most impacted because it is the place of onset.

Respiratory and Coughing
There is no way to know Patrick's actual rate of respiratory decline. As I've mentioned in prior blogs, they haven't been able to get respiratory readings in over three years. This is due to his extreme decline in the bulbar region specifically his facial muscles. Years back Patrick participated in a trial at UC Davis where they were looking at using ultra sound technology to determine respiratory decline in ALS. I never heard the outcome of the ultra sound trial, but it seemed like a good idea.

Without any measurable way, the only way to determine his status is through his dependency on respiratory equipment and observation. Over the past 8 months he has increased his typical use of the trilogy (Noninvasive ventilator) from only overnight (6-8 hours) to about 18-20 hours per day. However, he is not fully dependent on the ventilator and can go without it for a few hours if necessary. 

He struggles with saliva and coughing which subsides while using the ventilator. So, part of the increased use is related to assisting in the management of coughing. I don't totally understand how the ventilator assists with this issue, but it does help.

When he is not using the ventilator, coughing can become quite severe. He has the added bonus that his body reacts to coughing with spasticity and clonus. Essentially, he begins coughing and his entire body becomes rigid and starts to shake uncontrollably. It's not pleasant to watch. If this happens in the car or while sitting at a table he often hits his shins which have a number of bumps and bruises.

We've had some close calls during transfers where he almost slides out of his chair as he begins coughing and becomes rigid and shakes. These are tense moments for him and me. Fortunately, I've been able to manage to get him hooked into his sling or tilted back in his chair before he slides to the floor. Unfortunately, being stressed, further exasperates these symptoms. 

Much of his coughing comes from a difficulty in managing saliva/mucus. With throat and tongue muscles compromised it's becoming more difficult to manage the fluids in his mouth. We have two machines that help with these issues: the cough assist, which does exactly that, it forces a cough. A mask is placed over the mouth and nose, the machine is activated and it pushes air into the lungs and then sucks the air out; hence a cough. This helps to keep the airway clear of mucus and brings up fluids. Then we use a suction machine, which is very similar to what is used at the dentist's office, to suck up the fluids in his mouth.

I doubt it's pleasant for him and it's not particularly fun to be the administrator, but it does cut down on the coughing and makes him more comfortable.

Food and Medications

Patrick has had a feeding tube for over a year.  He eats, drinks and takes medication exclusively through a tube. He simply can't manage food or beverage orally. When he initially had the feeding tube placed he still occasionally ate regularly, but sadly those days have passed.

The Ultimate Pill Crusher - Silent Knight

All his medications are given through the feeding tube. I've been through a number of different pill crushers and settled on the Silent Knight (thank you, Justin). This pill crusher is the easiest to use and does a good job of crushing the pills into a fine powder. You have to be careful with putting ground medication in the feeding tube, you don't want to clog it - trust me. I'm a bit of a pill crusher and syringe connoisseur.

We've looked at his medications to determine if they can be ground into a powder. Time released formulas are not meant to be ground up so we had to change a few.  In addition to prescription drugs you have to stay away from any over the counter medications that are time released. I try to find uncoated medicines or liquid formulas if available, these are the easiest and grind up the best.

Communication
Patrick's ability to communicate is extremely limited. When he's not using the Tobii (speech generating device) we use the a-e-i-o-u method I've described in past blogs. I try to stick with questions that require only yes or no answers. With his neck muscles severely impacted his ability to nod has diminished so we use blinks to answer yes or no. I also ask him to "make a noise" to designate yes. Making a noise works at 4:00am when he needs something and I'm trying to figure it out in the dark. This can get confusing though because of his use of the ventilator, he sometimes just makes involuntary noises.

Out Getting Nails Done - We take the Tobii & Respirator

During the afternoon Patrick uses the speech generating device (Tobii). I'd love to report that the Tobii works well all the time, but that just hasn't been the case. It would be awful though without the Tobii, so even with its challenges it is such an amazing tool. The challenges are twofold;

Firstly, it's a Windows computer, so all the problems you have with your computer he has too. Occasionally it locks up or decides not to work requiring it to be rebooted. The software requires updates and he runs the risk of viruses just like everybody else.

Secondly, it uses eye gaze to control the computer which is precisely why we have it, but it has its problems. For someone who is losing his neck and core muscles it can be difficult to get his eyes in constant aliment with the computer eye gaze. If he happens to be placed in his chair at a bit different angle or he starts to slouch, his eyes move away from the computer eye gaze and he loses connection. We spend a bit of time daily, calibrating the eye gaze, moving him in his chair, and adjusting the Tobii.

The other limitation is that it's just not practical to have the Tobii in front of him all the time. Generally he spends his afternoons using the Tobii but the rest of the time we rely on our a-e-i-o-u system or the use of yes/no questions/answers.

Eyes
Since his communication relies on his eyes either through blinking or using the Tobii, keeping his eyes comfortable is a priority. He continues to struggle with acid tears. I don't know what actually causes acid tears but if you "google it" you'll find its a common problem with ALS. The body creates tears that burn and sting.

Jake

Another problem is the occasional item that gets caught in the eye, such as an eyelash. This is a delicate problem trying to remove it without scratching his eye. We use eye drops, but flushing doesn't always work. It can be a bit of a project to get something out of his eye - I'd say my success rate is about 80%. 

Final Thoughts
The life of a person with ALS and his caregiver are not always a "walk in the park." We do our best to find good moments. We read, watch movies and hang out with a funny white dog. 

Hope you are enjoying the start of spring (at least here in California)! Here are some photos from some recent family events.

Patrick and the grand kids - Valentine's Day

At the Movies

Valentine's Day Dinner 2018

How's Patrick Doing? #11 - Part I: Mobility & DME

I started this "how's Patrick doing?" blog with the thought that it would be brief, 

Hanging out!

just more of the same. As I put "pen to paper" I realized it's not really that simple. The last update was over six months ago and although I don't see changes daily, there are a number of differences. I've decided to split this into two parts. The first part addressing his limited mobility and DME (durable medical equipment) and the second part his respiratory, speech and bulbar (the area of head and torso) issues. 

These updates are difficult and yet enlightening because they require honest reflection and assessment. I consider our daily routine, recent challenges, and differences in his needs. In regular life, I just manage the day and don't really look at the bigger picture. But, occasionally it's important to pause and consider the ALS progression.

Just a reminder, ALS progression is unique to the individual. Although there are patterns to the disease based on where it first manifests and the speed of progression, everyone's journey is different. Not everyone gets every symptom; Patrick has muscle cramping and spasticity, but only about 30% of ALS patients have these issues. He's just one of the "lucky" ones, I guess. We passed the five year anniversary of his diagnosis in December. The average life expectancy for ALS patients is 3-5 years so his progression is slower than most.

DME (Durable Medical Equipment)
Until ALS, I had never heard the acronym DME, let alone know what it meant. I guess it's more of an insurance term because it's referenced on most of Patrick's paperwork. We use many items that fall under DME. Yes, we are quite dependent on equipment, machines and technology. For us and many ALS patients, DME is where medical costs really add up.

Recently, we met a couple at the movie theater. The husband was in a power wheelchair. We sat with them in the disability section and chatted after the movie. His story was that he had been in a car accident and broke his back, leaving him paralyzed. She pointed out that Patrick had a really nice chair. After the accident she said, " I realized how important DME was going to be." Sadly, she also found out that his medical insurance had a DME lifetime cap of $25K. I thought about this - boy $25K - that doesn't cover much and wouldn't cover the cost of Patrick's chair, not to mention all his other DME. Off the top of my head our DME items include his power wheelchair, hoyer lifts, walkers, ventilators (trilogy), cough assist, suction machine, Tobii (speech generating device) etc. etc. Let's just say we've gone WAY over $25K. There is no "point" to this story, other than to say I am grateful we don't have this cap.

I'm not a fix it person... I have tremendous respect for the tinkerer, but it's just not me. So, the upkeep, knowledge, maintenance and trouble shooting on all the DME items are a source of stress for me. 

Recently, I was transferring Patrick in the battery operated lift from the shower chair to the bed.  As I lowered him onto the bed, the lift stopped with Patrick dangling in mid-air. In the moment, I thought, "ok, we'll figure this out and thank goodness he's hanging over the bed."  I used "The Google" (as my mom calls it) and downloaded the owner's manual. After a bit of time, I determined how to lower him onto the bed with the emergency release. It's only later that I thought, "holy cow that could've been bad." I figured out the next day, that the battery was dead and no longer holding a charge. Fortunately, I was able to get a replacement battery through the ALS Greater Sacramento loan closet. Technology dependence has it's downside. 

I'm not able to defer these troubleshooting jobs, its just me and things have to be fixed. I've developed a fairly comfortable relationship with the following items: krazy glue, rope, duct tape, velcro and zip ties. So, when Patrick's power chair controls broke off recently, I used a zip tie and then krazy glue to put it back together. Seems okay, so far.  It's not covered under Medicare and they run $1,000, so I'm hoping it will stay together.

Broken controller held on by temporary zip tie.

The power chair has been modified a number of times over the past year. We added a new back cushion, arm troughs, lateral and hip extensions, and attendant controller. His core muscles are deteriorating and this creates a number of challenges for him and for me. For example, the new back cushion helps to combat pressure points. Constant pressure on bony points can cause bed sores so were working to avoid this problem. 

Mobility
At this stage from head to toe, Patrick has very limited mobility. Starting at the top, his neck muscles are extremely weak. He is a bit like an infant where you have to cradle his neck during transfers or when rolling on his side. He leans left and his head needs to be turned straight throughout the day. In bed we add a pillow to keep his head up right. His ear often gets folded and has developed a bit of a callus.

Throughout the day, I shove his shoulder to straighten him out. The new lateral extensions on his chair help his upper torso to stay in place, but they can't help with his head and shoulders. His arms, hands and shoulders are completely immobile. His shoulders are bony with significant muscle atrophy. We changed out the back cushion with an "air cushion" type which allows for greater comfort and support. This cushion combats the bony points that lay against a back surface. Pressure points are a common problem with the lack of mobility and muscle atrophy.

With his core muscles deteriorating, throughout the day he slouches and sometimes we put him all the way back in his chair to scooch him back in the seat.  When transferring, it's important to get him straight in the lift so that he starts straight in the power chair. Adjusting his body after he's placed, is limited.

His legs and feet are now showing signs of the disease. We elevate them in the evening to reduce fatigue on his knees.  His ankle is starting to curl which occurs due to the muscle atrophy. The addition of the hip extensions keep him in place and his legs straight. His remaining strength in his upper legs, allow him to push back in the chair. The lower leg muscles have thinned and lost much of their strength.

With a lack of mobility and muscle definition we work to keep him comfortable.  We use pillows, blue booties and blankets to cushion him. When using blankets you have to adjust them so they don't weigh heavily on his feet and ankles. With the ankles and feet being weak the weight is uncomfortable and can cause sores on his toes.

The physical therapist has prescribed range of motion exercises. We started these a few years ago. Initially, he used his own strength to complete the exercises, now the movement is entirely done by me. The goal is to avoid frozen shoulder and to keep ligaments moving.

There is an increase in spasticity and clonus.  When he coughs, he often becomes rigid and shakes. This makes transferring harder and on a couple of occasions he nearly slid out of his chair. These symptoms are exasperated by stress and can be extreme. We've had some close calls but fortunately no permanent damage.

It's sad to reflect on all these changes. The loss of movement is horrible and creates a whole new list of issues. We work to combat potential problems as to not make things worse. He can still move his right index finger a little... go figure...

Next blog - Part II: Respiratory, Speech and Bulbar Changes

Stretch out today, run a mile, do jumping jacks, walk, the body is an amazing instrument.