Distraction vs Reality

A couple of my friends who blog about ALS and live in the northern hemisphere (Liz in Canada and Christian in Germany) have written about death from ALS in the last week. The days are getting shorter and the leaves are blowing off the trees. Halloween on October 31st with lots of skeleton decorations and Dia de Los Muertos in Mexico on November 1 (All Souls Day in the Catholic church) are holidays with roots in death even though now they are celebrations. So it makes sense that people think about death this time of year.

I am writing about distraction because it’s a coping method for dealing with a fatal disease. I like to be busy and get frustrated when my allergies cause me to have to be tied to my cough assist and suction machines. I must be allergic to sage brush now and that is a plant that spreads pollen in the wind and it will be flying around until we get a good rainy day. (Which might happen Wednesday if the current forecast is correct). Sagebrush is the state flower of Nevada and the hills around Reno are covered with it. I still have major post nasal drip that gets stuck in the back of my mouth. If I breathe through my mouth I breathe through mucous and can’t get a breath. That is why I am still using the napkin in my mouth. It forces me to breathe through my nose. I have a good nasal spray, Dymista, so I am usually able to keep my nose clear. I have a daily to do list and I try to do at least two things on it each day. So my daily to do list and managing allergies are a big part of distracting me from the realities of how this will end. ALS deaths are usually peaceful. My diaphragm will become less and less effective and then I will have difficulty expelling CO2 and I will sleep more and more. I won’t be gasping for breath. Not a bad way to die. My loved ones can be with me. I feel bad that it will be hard for them but I didn’t write this book and can’t change the ending.

I was disappointed to not be able to go to aqua fitness on Saturday November 11, the first day I could swim after my port surgery on October 10. My allergies were too bad. I have tried nearly every antihistamine on the market. Nothing keeps my throat clear long enough. The trick is to find something without major side effects: One that won’t dry my eyes too severely and one that won’t make me too drowsy. I am now trying Zyrtec and a new formulation of it called XYZAL.  It could take up to a week to be effective but my first 10 ml. dose was effective for about 4 hours.

It is ok to be sad about leaving this wonderful world, and we have to grieve at times. But I think it’s ok to carry on with life and do the things that make you happy while you can. I play piano and I knit and I do aqua fitness and spend time with family and friends and I want to do those things until I can’t anymore. 

But I was having my own pity party when I couldn’t swim on the first possible day back. And then I was inspired by a 30-year-old friend with ALS. Early  Sunday morning I read a blog post from Suuny Braus Erasmus who wrote about Franklin D. Roosevelt, who didn’t let paralysis from polio stop him from becoming the 32nd  President of the United States – which had been his goal before polio. Reading that gave me the kick in the ass I needed and I went to aqua fitness on Sunday morning at 8:45. For the first time I kept my napkin in my mouth the whole class and had to focus on nose breathing. It was not comfortable but I got the workout in and that feels good.

I am so inspired by so many younger people with ALS:

  • Sunny Brous Erasmus, diagnosed at age 28, met her husband at 29 and got married at 30 and blogs at sunnystrong.wordpress.com. She continually inspires me. 
  • Sarah Coglianese, diagnosed with ALS at age 33, who just won the Tradition of Excellence Alumni Award at Oak Park River Forest High School. She gave an impressive acceptance speech about empathy and how it could help many of the problems in this world. She has raised very large amounts of money for ALS research with her #whatwouldyougive campaign (which inspires empathy) and is a gifted writer who inspires ALS patients and others with her blog about ALS speed4sarah.com. Despite me being 18 years her senior, she is my mentor and friend. I went to OPRFHS with her aunt.
  • Corey Reich, who was diagnosed in college at age 21 and has raised lots and lots of money for research in his ten years with ALS and he is still a tennis coach at his high school.
  • Andrea Lytle Peet, who was diagnosed at age 34. She was a triathlete and she continues to compete in marathon races on her recumbent bike to raise money for ALS research and blogs at teamdrea.com
  • Osiel Mendoza, who was diagnosed in college at age 21 last year. He married his girlfriend a couple months ago – they have been a couple since 8th grade. He has already raised a lot of money for ALS research. He gave an inspiring speech at ALS TDI’s fundraiser in Boston a few weeks ago.
  • Eryn Criswell Blythe who was diagnosed at age 36 and has two young children. Her husband is her caregiver. She was pushed in her wheelchair in the L.A. Marathon last summer to raise money for research.
  • And Liz https://lizfeltham.wordpress.com and Cristian https://workandloveblog.wordpress.com are both younger than me I believe, and they both inspire me regularly.

These young people are taking what life has dealt them and are making the world a better place and moving forward with optimism. That is certainly enough to stop my 57 year old pity party!

The only picture this week is from Andy’s Cross Country banquet on Wednesday last week. He got a Varsity letter and he got a coaches award for his hard work and improvement. 

I am proud of him for working hard on running. Now he has to figure out how to keep his grades up while participating in a sport that takes so much time (practice 6 days a week). He wants to do track next semester but he will only be able to if he can bring his grades up this semester (family rule). He did it last spring to be able to compete in cross country so I think he can do it again if he can focus on school. Keeping him on track for track is a distraction too. Maybe all these young amazing people with ALS can inspire him too.
I don’t know when my ALS journey will end and I should be more hopeful since I am on the new drug Radicava, but the shorter days and allergy woes were bringing me down. At least we now know that I am probably not allergic to the Radicava since my symptoms have continued on the off cycle. And all I have to do is think of these young people with ALS and my personal pity parties will be over.

 

Halloween and the end of first round of Radicava 

As promised, I reprised my Beauty that Killed the Beast costume for Halloween, and this time got pictures.

Photos by Andy Macdonald

I had to make a little hole in the dress for my feeding tube so I can eat while wearing it. But since King Kong made such a mess of my dress anyway, the little hole was not noticable.

Our street gets filled with cars bringing kids from other neighborhoods. When the doorbell rings every few minutes there are about ten people each time on the porch. After running out of candy very early one year, we decided to never be home again. Luckily, our good friends Chuck and Alice have an annual Halloween party. Stan reprised his Parrot Head costume but Andy changed his up.

Andy got to trick or treat with the younger kids and he filled up a pillow case.

It was a great party with a little boy who dumped his candy on the floor and his dad went through it with him (classic!)

And Dad wanted to steal the candy (also classic!)

Calvin the little pirate was happy with his treasure.

Calvin’s sister Alana with her great grandparents
Doesn’t Alana look comfy with her great grandpa?

Alice had invited two other friends from aqua fitness, Marilyn and Mary. I was able to give them my update and tell them I will be back November 11.

Marilyn from aqua with Rita, Chuck and Alice’s daughter 

I miss my aqua fitness classes so much. They really do cover the range of motion. I had to take a month off after my port surgery which was on October 10. So on Saturday November 11, I will go back. I do my range of motion exercises home but it is not the same as an hour class in the water. And the first time I did the exercises at home was Nov. 2. I also have my ALS TDI Precision Medicine Program motion sensors that I wear for a week each month and have prescribed movements to do every other day and I started wearing them on Nov. 2. I am feeling it in my muscles but I know it is normal to feel sore when starting an exercise program. It is also scary because cramps and muscle soreness can be a sign of ALS progression. But I have to be ready for aqua fitness on October 11. Taking all this time off of exercise was not good for me. But I had plenty to keep me busy with the extra time.

The Patient Fellows and Committee for the ALS/MND International Symposium in Boston had a conference call where we each shared our interests in sessions we hope to attend. There is nice diversity among us so we won’t all be reporting on the same things. It will be tricky balancing attending all the sessions I am interested in with my energy level. 

Our dryer broke and I was able to call to arrange a service visit. I was home alone when the service guy came and I was able to deal with that using my Boogie Board. That hardly seems like a blog worthy event, but anytime I can handle things like this on my own seems like a victory now. 

We also went to a fun fundraiser for Reno High School. It included raffle, silent auction, buy a balloon for a guaranteed prize, and a live auction as well as sit down dinner. We had a fun table with friends from my work, other good friends, and new friends.

With Rene and Janet who I worked with. Photo by Stan Macdonald
Todd and Judy, my mala bracelet friend. Photo by Stan Macdonald
Justin and Suzi Champagne, new friends. Photo by Judy Harrison 
Photo by Judy Harrison

Also at our table were my friend Melissa, who was the photographer for the event, and her husband Charlie, who we met for the first time. The photographer is never in the photos. Sorry Melissa. I wish I had gotten one of you and Charlie.

As part of the live auction they auctioned off about 10 cakes from the Atlantis bakery. If your table bought a cake, that was your dessert. If not, you got cookies. Stan loves chocolate cake so he won the bid for our table.

Paying the winning bid for the cake. Photo by Judy Harrison 
Photo by Judy Harrison 

It was a fun evening supporting our son’s school. We also scored a silent auction item.

The Fly Away “basket” put together by Reno High staff, includes $200 in Southwest Airlines gift cards and all kinds of travel goodies in a nice travel bag. Photo by Sabine Beach

On November 2, Judy and I were going to go see the movie I’ll Push You about two friends who did the Camino de Santiago, and one was in a wheelchair so his best friend pushed him all the way. This was a fundraiser for MDA shown one night only all over the country. When we tried to get tickets it was sold out. But Judy decided to go anyway to see if she could get in. With my allergy symptoms, I did not want to go without a sure ticket. Stan’s cousin Lisa called and said she was in town so we met her at Great Basin for dinner. At 7 pm, Judy texted and said she got two free tickets and could I buzz down to the theater? But because we were out to dinner I could not hop in the car and go. I do hope to see it someday. Judy said the words love, connection, and hope were used many times in the movie 💜. She also said that the guy in the wheelchair was uncomfortable being cared for by others until he realized that helping was making his caregivers happy. That is a good thing for ALS patients to realize. My friend Sunny Brous (another blogger with ALS) shared this quote:

One of the secrets of life is that all that is really worth the doing is what we do for others. – Lewis Carroll

Last week I also completed Round 1 of my Radicava infusions.

Infusion #14 of Round 1

Now I get 14 days off. In the rest of the cycles I only have to do 10 of 14 days. So I will be able to do 5 on, 2 off, and 5 on then have 16 days off.

The weather forecast is showing the next three nights should have temperatures below freezing. I hope that this will be the end of my allergy season.

And finally, my online friend whose tagline was “I have ALS, ALS doesn’t have me,” passed away after over 10 years with ALS. Rest in peace Andre Williams, Sr. Your positivity and kindness will be missed.

Thoughts during a non traveling week with no one in the hospital 

We did not travel and no one went to the hospital this past week. It was nice to have a week at home after so much travel, and really nice to have no hospital visits. (Knock on wood).

We did have a visit from Theresa and Sandy, sisters from the family I stayed with when I first came to Reno.

Theresa, me, and Sandy

Theresa was in town from Klamath Falls, Oregon and Sandy was in town from Denver. In the photo I am wearing the kaftan Anita, my stepmom, made for me with a kangaroo pocket for feeding tube access. I love it. Theresa is taking my mountain bike home to try it out and decide if she wants to buy it. I won’t be mountain biking anymore.

I did get to aqua fitness twice this week, which is better than the once a week I averaged in June. I had been going in the afternoon because of napping in the morning, after not sleeping well at night. One workout this week was 5:30 P.M. I had a nice surprise when my friend Shelli, who usually teaches in the morning, was subbing. The other workout was my regular 10:10 morning class. It was nice to see my friends.  I feel the aqua fitness is what I need for range of motion. I always go in the hot tub after class  (my friend Alice calls it our dessert). I usually meditate in the hot water, but I also hear other conversations. One I overheard was too incredible to ignore. A woman was talking about a woman she saw on TV who had 24 inch fingernails. When asked how she does things, she said, “I can’t do anything. Everybody else does everything for me.” I thought why would anyone choose that? There are so many ALS patients who would give anything to be able to do anything for themselves.

After the hot tub,  I go in the steam room for my curly hair. It only takes a few minutes to get my hair to react to the humid air by curling perfectly. Oh, if my middleschool self (who HATED my curls) could see me now!

I set a goal of filling my five food delivery boxes each month with giveaways. Since we traveled so much in June we had twice as many boxes to fill. Between all three of us we filled them all. It feels good to simplify and only keep what we really need. I am more motivated than ever. Every day  I can use my arms and legs is a gift. I read And the Mountains Echoed by Khaled Hosseini. The protagonist’s mother had ALS and when he visited her she was busy with house repairs, trying to get as much done while she could. It has taken me a year to get really motivated. Fatigue is my limiting factor.

Stan got some good news this week! After numerous denials from our insurance company, he was finally approved for a drug that could potentially help him get off prednisone. He started the new drug a few days ago. It is wonderful to have hope for him!

I am waiting for my new drug, hoping it will be available in August as MT Pharma, the drug company, has been saying.

I submitted photos to the Great Nevada Picture Hunt. Lots of travel around the state this summer and my new Canon Rebel camera helped. I may share what I submitted in a future blog. Photography has added so much to my life, including new friends from the Nevada Magazine event a few weeks ago, and one who will be a close friend (Melissa😎📷).

It is also a luxury to be able to watch the Tour de France live in the morning too. Even when I get up early to do my meds, it’s already on. Stan and Andy enjoy it too.

I am knitting again, trying to make socks for the first time. I had been avoiding knitting, afraid that my fingers wouldn’t do it. I now realize I need to do what I love until I can’t. Knitting is very relaxing for me – a Zen experience. And I am finding socks to be a fun new challenge.

In closing, a t-shirt shirt that my dad made for me states the obvious but I love it.

And even with a disease that sucks I can still enjoy life.

A closeup of my dad’s abstract that unintentionally looks an abstract of ALS. Sort of. And I love that there’s a turtle on it.