This was written by my friend Shelly Hoover:
What is it about the month of January that is depressing? So many of my friends with ALS wrote about depression last month. There was even a widely shared post about the choice of death or divorce – a man in the United States who decided to get a tracheotomy rather than dying and his wife divorced him after that because of the burden of care.
I have had my own pity party because of the post nasal drip and drooling and mucous that are still plaguing me. My neurologist at UCSF said it is not an ALS problem. She has not seen it before. I went to an ENT in Reno and a CT scan of my sinuses was clear. But now I have an expitided referral to the UCSF ENT department (we will see how they define expedited). The next step after, if needed, will be my Gastroenterologist and the earliest appointment I could get is April 4.
Let me tell you what this has evolved to – I get bad sinus headaches to the point of bad eye pressure and sometimes even ear aches. I have found that using Mucinex every 4 hours followed by cough assist and suction sometime in between can usually keep things moving. I also try to stay upright – standing or sitting to facilitate gravity assisted movement through esophagus. It takes a lot of time to manage and makes it hard to have plans away from home. But if this is my very own ALS journey (and it obviously is) I will have to readjust my expectations and figure out how to be happy with this.
It reminds me of my ALS diagnosis saga – every new antibiotic or doctors appointment brings hope that things will be better. And every failure is depressing like the lack of finding problems was during the “Please anything but ALS” phase.
But I have read beautiful memoirs by people with cancer (When Breath Becomes Air by Paul Kalanithi and The Bright Hour: A Memoir of Living and Dying by Nina Riggs). Both described their lives with cancer and it sounds in many ways worse than ALS. Although neither book dwelled on the difficult or painful parts, they were mentioned. I guess the only easy way to die is suddenly. One happy outcome from those two books is that Paul’s wife and Nina’s husband are now in love.
So I am challenging myself to find a happy outcome. I can plan on getting help soon at UCSF and at my Gastroenterologist in April. And I can fake it until I make it or until it is over. I am lucky that I am not aspirating this thin drainage. I am lucky it is not affecting my breathing, although I often can’t make through the night with my bipap because of too much mucous in my mouth. And I am lucky to be able to still use my hands and arms and legs.
Because I can still use my hands and arms, Stan and I decided to take a Community Education American Sign Language (ASL) class. It is frustrating for Stan when I do charades not very well so our communication has been difficult. Plus if we use my phone to navigate, my voice is the same as the GPS lady who says, “Take the second left”. We had the first class and it was fun with a great teacher. It was overwhelming at the beginning but with practice it became easier. Finger spelling has already helped us. Once when Stan was leaving and I had some mail to go out, he asked where it needed to dropped and I finger spelled our mailbox. That saved me from having to run to get phone or Boogie Board or paper and pen to write. Fingerspelling has also been helpful riding in the car. We were also told that practicing fingerspelling while driving or riding in a car with license plates and signs would be a great way to start. We have a lot of online homework, but it is fun. I love that it is a whole body language and I have always loved learning languages.
Other things keeping us busy are Jonika and Ollie visiting until 2/14. They are a joy to have with us.
Jonika and I took Ollie to the playground at Idlewild. One of the play structures had the American Sign Language alphabet!
It was so nice to see Lyndi again after so many years.
We also had a nice visit with Stan’s mother, Sharon, and Jonika’s mother, Terry. We enjoyed a meal at Naan and Kabob and relaxing visits at our house.
And more Ollie cuteness:
Last Friday we left as soon as Andy got home from school, and drove to Sacramento’s Golden 1 Center for the Kings versus Warriors NBA game. We met my best friend Erika and her kids there. It was very loud so Ollie had ear protection.
Jonika and Ollie were ready to leave after the third quarter so Erika and I left with them and went back to Erika’s house in Eldorado Hills. It meant we missed the fourth quarter where Kevin Durant took over and brought the Warriors to victory. But it gave us more time to visit with Erika and Stan stayed and had fun with the older kids.
The next morning we had a nice breakfast and more fun with Ollie.
Then we drove to El Cerrito to pick up Andy’s viola bow which was being rehaired. We stayed in Oakland on the estuary. Saturday night we drove across the Bay Bridge and across San Francisco to cousin Julie’s. Julie had not seen Andy since he was Ollie’s age and she hadn’t seen Jonika since she was a teenage highland dancer. Julie’s grandmother was Stan’s great grandfather’s little sister and they were from Scotland. We had a wonderful visit.
On Sunday morning we met Jonika’s friend Rob for brunch in Oakland. Rob is Jonika’s mother’s best friend’s son so they have been friends since childhood.
Then we drove home, listening to the first quarter of the Super Bowl on the way.
And so began February, with good distractions from my illness, and hopes that things will soon get better with my sinus problem.
I had a very busy weekend and rather than hurry to write during the Super Bowl I will hold the presses and write a better blog.
You know when you work all day and then lose most of your work? That was my Sunday. I will post as soon I can rewrite it.
I started Radicava Round Two on Friday. Our wonderful home nurse Pam supervised Stan doing the needle poke. Now he is signed off and can do it unsupervised. This time I will do 5 days on, 2 days off, and 5 days on, then 16 days off. I will try to get my swimming in on the off days because the needle stays in for the 5 days and it can’t get wet. I did go to aqua fitness three times last week and it felt great to be back. I had to keep my napkin in my mouth to breathe through my nose but it worked. Still trying Zyrtac for my allergies. My doctor at UCSF just recommended papaya enzymes to thin mucous so it won’t get stuck in the back of my mouth, available through Amazon, so I ordered them and they will arrive Tuesday. I was using Pineapple/papaya Enzymes from Trader Joe’s and that worked but then I noticed a pineapple allergy. It’s nice to know I can get papaya alone.
Saturday was Stan’s sister Terry’s birthday. She came by and hung out with us in the afternoon. She helped my allergy situation by helping to change the furnace filter. She also dusted the ceiling fan in our room. And she offered to come do deep cleaning when we are traveling in the next 2 months.
Today, Sunday is my sister Beth’s birthday. We will be with her on Thanksgiving. My Radicava schedule worked out nicely. My 5th day will be Tuesday and I may be able to go to late afternoon aqua. Then for Wednesday and Thanksgiving I don’t have to infuse.
It also works out for my trip to Boston for the ALS/MND International Symposium. We leave Dec. 6 and return the following week a few days before Round 3.
Speaking of that conference, all ALS patients and caregivers reading this, let me know if you have specific questions for the researchers. I will do my best to get them answered. You can comment on this blog or if you came to it through Facebook or Twitter you can comment there.
I plan to make sure they know it’s not just mice and test tubes, and ask about future treatments being accesible to tube fed patients as well as patients with lower breathing scores and lower ALSFRS and ALSFRS-R scores. And also the non plecebo trials going on at Duke should become the norm. No ALS patient should have to take a placebo. There are good records of historical controls that can be used.
Please stay tuned.
I am breaking my Monday only rule this weekend because I will be camping off the grid Monday morning for the Memorial Day Holiday. So I am posting on Friday, and it won’t be a mistake. For U.S. readers, have a great holiday weekend.