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.

 

Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10

On October 21 we went to Clairmont Country Club in Piedmont, California for the annual Corey’s Crusade fundraiser for ALS TDI. Corey was diagnosed in college. This was his 10th annual party (He is now 31). Every year the party has had a different theme. For this party we could choose a theme for a costume from any of the previous 9 themes.

Margaritaville, Safari, the Beatles, Masquerade, Midnight in Paris, Western, Super Hero, Havana Nights, and Purple Rain.

Stan was a Parrot Head for the Margaritaville theme and Andy chose Purple Rain. I was a superhero of sorts, the Beauty who Killed the Beast.

Andy added round purple sunglasses and purple beads that they had at the party. You will have to wait for Halloween for a good photo of my costume. 
A selfie we took on the way in
With Jen from ALS TDI. We love you Jen! You can see the giant gorilla hand around me. But I promise a better photo on Halloween.

It was a great party where we saw friends and met many nice people. And I am sure they raised a lot of money. We stayed in Walnut Creek because we had to be back in Reno for the 1 pm show Beautiful – Carole King the Musical. I did my Radicava infusion and ate my feeding tube breakfast while Stan and Andy went down to the hotel breakfast. Then we packed up quick and hit the road. We made it by 12:55 pm. This was an 85th birthday present for my dad. It was nice to share such a wonderful show with my dad and Anita and Stan and Andy. Even Andy liked the show.

I have now completed over a week of Radicava. The first few nights I felt that I was sleeping better. I have been remembering dreams again. But by the 4th and 5th day I was having runny nose and lots of thin post nasal drip. There was so much I thought it must be an allergic reaction. We notified Searchlight of a possible reaction. But the next day Stan talked to two different pharmacists from Option Care. They said that it is possible to have an initial reaction to port medicine and it would go away with time. They also said see how I feel on the off weeks. So I loaded up on Benadryl and Sudafed, and I am still hoping for a freeze. I am watching those low overnight forecasts. Come on cold weather!

I can’t swim until a month after my port surgery, which will  be November 11. I can’t wait to get back in the pool. I feel better when I am doing all those range of motion exercises. I will have to start doing them at home for the next two weeks. For the next round of Radicava we have a little more flexibility. It will be ten of 14 days so we can do 5 days on then take the needle out and I can have two days to swim and shower without plastic wrap, and then do the second 5 days. We looked at the November calendar and maximized the days I could swim. I also will explore ways to cover the needle so I can do aqua fitness and stay in shallow water.

My friend Erika came up from Eldorado Hills, California for a quick visit. She learned how to do my infusion. I am able to do the infusion myself now but someday I may need help.

I am so blessed to have wonderful friends and Erika is the best of the best!

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.

Range of Motion and the Range of Light

I went to my local ALS Support Group meeting last week and there was a presentation on Range of Motion exercises for ALS patients. They were presented as important for patients’ comfort and to help them sleep better. I know my aqua fitness helps me and I tried some of the exercises this morning and they felt great.

Cue the guilty feelings. When my mom had ALS, she was still living in Oak Park, Illinois  (first suburb due west of downtown Chicago). My brother Pete still lived at home and he was her main caregiver. My sister Cathy would relieve him on the weekends. I was living in Reno, working as a hydrogeologist. The Family Medical Leave Act had just become a law so I was able to take a Friday off once a month, and fly to Chicago on an early flight, arriving by midday. I would fly back to Reno on Sunday afternoon. I think Pete usually picked me up at O’Hare and drove me back on Sunday. One Friday afternoon after I arrived, my mom’s home physical therapist came for a session. She was teaching me the range of motion exercises. I was naively and incorrectly under the impression that physical therapy was only for healing. I actually said, “Why does she have to do these?” while thinking, “She’s going to lose all this movement anyway.” The physical therapist simply said, “These exercises are VERY important.” I was not convinced. Now that I am an ALS patient and now that I had the exercises presented in a more thorough way I am convinced. I wish I had this insight when my mom was living with ALS.😓

For those interested, the nine sheets of range of motion exercises are at the end of this blog post.

The pool at St. Mary’s Health and Fitness where I do aqua fitness has a west window that lets us see the clouds, sun, trees, and wind while we exercise.

St. Mary’s Health and Fitness Center’s swimming pool with a west window that gives it a range of light.

Last week I overheard two younger women talking in the locker room and one of them revealed that she was pregnant. The other woman said, “You have to try the pool in the afternoon. The way the sun shines through the windows makes prisms of rainbows all over the pool. It’s a magical place to be with your baby inside of you.”

I was privileged to overhear this conversation because it helped me realize I exercise in a pool with a range of light and it helped to inspire this blog.

We live very close to another famous range of light. This one is the Sierra Nevada Mountain Range which famed photographer Ansel Adams called the Range of Light.

We have spent many happy times in the Sierras in all different ranges of light. My memories go back to pre-1985 when I moved to Reno. On my first visit when I was in grad school, family friends, Michelle, Theresa, and Sandy, who were in high school drove me around Lake Tahoe.

Lake Tahoe, as seen from Mt.Rose Ski Tahoe

My sisters Cathy and Susie and I climbed Half Dome at Yosemite. I also took a trip there with my mom. And Andy, Stan, and I went there a few years ago. This is the area of the Sierras where Ansel Adams took his famous photos.

Upper and lower Yosemite Falls
Mirror Lake at Yosemite 

Stan and I had our first date skiing at another Sierra ski resort Alpine Meadows in the morning and sailing on Lake Tahoe in the afternoon.

Early in our relationship we got a permit to climb Mount Whitney. As luck would have it our permit was for early October.

Mt. Whitney, the highest point in the continental United States, is on the left. This is on the east side of the Sierras. Ansel Adams also photographed in this area.

We planned a loop route backpacking for two nights. We camped at 10,000 feet with 7 or 8 other groups of people who would also be climbing Whitney the next morning. It was extremely windy and since it was October it was dark by 7 PM. When you go to bed at 7 PM  you wake up rested with a lot of dark hours still ahead of you. The wind was howling all night. At daylight, we saw that another tent had shredded and we had granite flakes blowing into our oatmeal. We started the climb and got to the switchbacks where the trail was snow and ice covered. It was treacherous without crampons. Little pellets of snow, the kind that sting your face, were blowing all around us. As we ascended, my eyes bothered me more and more. This was 1989 and I had extended wear contacts that I left in when I slept. These contact lenses needed alot of oxygen exchange and as the oxygen saturation decreased the higher we went I realized I was not prepared to go higher. So reluctantly we abandoned our summit quest and headed back down.

I remember the first time I saw Mono Lake. Descending the hill from Conway Summit at sunset, I saw two backpackers walking up a dirt road toward the Sierras. It seemed like a very spiritual place.

I remember Andy’s first backpacking trip on the Pacific Crest Trail south of Donner Summit. He carried his sleeping bag and hot wheel cars. 

We veered off on a side trail and found a great campsite above a lake for swimming and with smooth granite slabs above that were perfect for hot wheel car races and crashes. 

Andy swimming near our campsite on his first backpacking trip.
Above Donner Lake and I-80 on our return hike

Other memorable Sierra Nevada  camping trips:

  • Little Andy kayaking with our friend Brian at Convict Lake and getting to watch a truck dump the fish stock in – pretty exciting to see from the water. Perhaps the same trip, stopping at Mono Lake and talking with the fire fighters who were on call for lightning strikes. Andy got to sit in the driver’s seat of a brush truck.
  • Camping at Nevada Beach with Catherine and Brian and making Bananas Foster on top of the brand new bear box. When the Rangers came to inspect the new installation the next day one of them said, “I wonder what happened to the top” as we smirked in our campsite.
    • A phenomenal backpacking trip with Boy Scouts from Carson Pass to Blue Lakes. We ascended through a garden of waist high pink, blue, yellow, and white flowers. The flowers were a thick blanket on either side of us. At one point, a woman hiking down the trail came around a corner and said, “There’s a surprise around the corner.” We turned the corner and there was a little creek running across the trail. We had been hiking beside this creek but couldn’t see it because of the blanket of flowers. We camped by a lake for swimming.
      The same lake and mountains in the evening Alpenglow, revealing the Sierra Nevada’s right to be called a Range of Light!
      • Carson Pass to Blue Lakes continued: The next morning we descended to Fourth of July Lake. We were hiking through another garden. This time the pallette was red, yellow, and orange. The flowers were Indian Paintbrush and other more arid flowers. They were about knee high and much more widely dispersed than the previous day’s garden, yet equally beautiful. At Fourth of July Lake, fish were jumping out of the water to catch insects. From there we traversed a valley as beautiful as Yosemite. The second night we camped near a creek that was perfect for rinsing hair under waterfalls and hanging out in the water to beat the heat.
      • Another scout backpacking trip, this time to Desolation Wilderness. The second day we took a day hike up to Aloha Lake and I remember saying I was glad to live close to such a beautiful place.

      • Another Boy Scout trip, this time to Hutchinson Lodge, a Sierra Club facility.
        Starting our own fires to heat cans of hearty hobo soup for lunch
      • Also cabin rentals at Twin Lakes with good friends many years in a row
      • And so many wonderful memories of camping trips to Chuck and Alice’s property by Sugarloaf Mountain north of Frenchman’s Lake.wp-1487971228401.jpg
      • Our cherished annual camping trip with our friends Erika, Paul, David, and Maddie to Plumas-Eureka State Park.  On one of those trips we witnessed a fish stocking of Jamison Creek. This time they carried buckets of fish right through the campsite, dumped them in the creek, and made several more trips.

      I remember so many great days skiing in the Sierras. Especially that one April Spring Break Tuesday morning at Mt.Rose with Andy a few years ago when there was hardly anyone there and we had fresh powder tracks all morning.

      Climbing Mt.Rose with Dawn and Keia, the foster teens I mentored.

      And a fun hike with the girls up Brown’s Creek Canyon.

      And lots of fun mountain biking and hiking and running all over the beautiful Sierra Nevada Mountain Range.

      Once shortly after I moved to Reno, I climbed a mountain above Plumas-Eureka State Park and when I got to the summit and looked up there were waves and waves of migrating Brown Pelicans that continued for quite a long time. They would circle in the uplifts and as soon as they lost the uplift they scattered and then got back into their V formations until the next uplift. It was pretty amazing to see!

      This same mountain range is having the most snow this winter of any in recorded years. While this is great for skiers and our water supply it also causes problems when the I-80 Highway gets shut down to trucks. It delays shipments. We made the mistake of ordering my next monthly shipment of formula food on the Friday before the three day Presidents Day weekend when I only had four days of food left. I had enough food through Tuesday when I expected my food to be delivered. When we heard that I-80 was closed to trucks on Tuesday, we realized that my shipment of food from Sacramento would probably not be delivered that day. My husband went to CVS to pick up prescriptions he also picked up a 6 pack of Boost Plus for me.
      I had enough to get through Wednesday. Late that day when we heard from our supplier that UPS was still playing catch up, off to CVS we went and got another 6 pack of Boost Plus for me to get through another day.

      I found that the Boost Plus was a little bit more difficult to digest than what I usually use, Jevity 1.5. On Thursday morning I had planned to go to aqua fitness at 10:10 AM. My stomach didn’t feel great after breakfast so I went back to bed. I didn’t wake up until 10:30. So no aqua fitness for me that day. I had Boost again for lunch. My food was finally delivered around 6 PM. So at least I got to go back on my normal formula for dinner.

      I am thankful for being able to buy Boost locally for when I really need it. We will try to order 8 days in advance next time to leave some leeway for delays. I love the Sierra in any season but it is most beautiful in winter. 

      I am also glad to know the range of motion exercises while I can still do them on my own.
      Here are the range of motion exercises: