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.

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!

ob la di, ob la da, life goes on

This Beatles song was played during an aqua fitness class last week. The instructor had us doing intervals, alternating mogul skiing with high knees, and speed skating. Thinking about these sports brought back memories. About 12 years ago we vacationed at Steamboat Springs, Colorado, meeting my sister Sue and her family from Houston. The Olympic trials for mogul skiing were going on there that week, and I remember the skiers with white patches on their knees going back and forth incredibly fast. So I try to emulate them in the pool. The speed skating reminded me of the speed skater in my high school class and her older brother who was a speed skater too – the Cabanbans. It is interesting to watch the memories that come back to me and what triggers them.

Andy started his Junior year of high school last week. One of his classes is AP U.S. History. He commented on his reading assignment for the first night of homework. It was an article about something that happened in 2005, the year he turned 5. He said, “I am old.” This triggered a memory from my U.S. History in high school. I remember being shocked to find out that the Civil Rights Act was passed in my lifetime, in 1964, the year I turned 4. It truly seemed to me that it should have been law much earlier in our nation’s history. And I probably shared Andy’s amazement at being old enough to study history in my own lifetime.

My grade school and high school classes lost a member last week. Mike Engels came to St. Giles in 6th grade. He had muscular dystrophy and they told us he might not live through the year. He walked with arm crutches when he arrived, but soon was in a wheelchair. Our old Catholic school had two story and three story buildings, and of course no elevators back then. Some of the guys in my class would carry Mike on their backs up and down the stairs. Mike didn’t die in 6th grade, but made it to age 57! I took piano and sewing lessons from his mother in high school so I would see Mike at his home too. He studied accessibility architecture, was a disability access activist for a while, had his own greeting card company, and was an active member of a group called Association of Horizons, a Chicago organization that provides summer camp and other outings for disabled adults. The family asked for memorial donations in Mike’s honor to the organization that was such a big part of his life. associationofhorizon.org/wordpress/

Many of my classmates shared memories on the news of his death that brought back memories to me of this great guy.

Mike reached out to me last July right after hearing of my diagnosis. This was his Facebook post to me:

Dear Meg Saunders Macdonald my heart goes out to you, learning that you have ALS. I just want to offer words of encouragement to hang in there. I have had Muscular Dystrophy for 50 years. Been using a feeding tube for ten years. I cheat and drink a few ounces of a favorite beverage during the day. It’s hard to turn down some ice cold chocolate milk. Also eat a few pieces of watermelon now and then. It has been seven years now that I have also been using a ventilator full time. I have full time care that puts me together like Mr. Potato Head. It really helps to keep your sense of humor. Feel free to reach out to me. Sending you a warm hug.   Mike

Mike’s Facebook.Profile picture. Rest in Peace Mike. You were a wonderful example of how to live with what life gives you. You lived with Muscular Dystrophy for 57 years and kept your sense of humor, and even still drank margaritas!

Going back to very early life memories, our great nephew/grandson Oliver turned one on July 26. He lives in Hawaii so we couldn’t be there.

Happy birthday Ollie, we love you so much. I love the new tradition of first birthday cakes made out of fruit (photo sent by Jonika)!

I also remember that terrible day – the day before Andy’s first birthday – 9/11/2001. But on Andy’s first birthday, we let him get chocolate all over his face. 

On Wednesday, Stan and I watched a Netflix documentary called Chasing Corals which was about a film crew documenting the spread of coral bleaching and dying as sea temperatures rise as our atmosphere fills with greenhouse gases. It was disturbing and sad because I want Ollie to see coral and I want Andy’s future kid(s) to see coral too. I was also sad to hear that the corals I saw snorkeling in the Florida Keys on a geology field trip in college are all dead. That amazing day of snorkeling in 30 feet of crystal clear water and the beautiful coral inspired me to get certified for scuba diving. It is really important to reduce emissions of hydrocarbons worldwide, and somehow do it quickly to make coral gardening possible. If all the coral dies, the ocean ecosystem will collapse, leading to widespread famine and poverty for the cultures that depend on fishing. So please do your part to reduce emissions – no idling, turn off unused lights, try to drive less, contact legislators or whatever else you can think of to help. Congrats to you if are off the grid and using renewable energy.

I had another flashback to first grade. I visited Katy, Andy’s personal assistant/ tutor, in her first solo classroom. I brought her a salad from Eclipse Pizza, and we shared lunch.

I stayed while she taught a lesson after lunch. It was School Rules and Rhymes. There were two girls who always had their hands up. I was that way in first grade too. But later I got shy. She introduced me as someone she used to work with and she told them it was cool that I talk with a computer (my phone) and type what I want to say. I used some of their class phrases – I said, “Holy Moly Guacamole you are all so smart”.

On Saturday night, our friend and former neighbor, Joyce, got a group of family, current and former neighbors together to go see a live production of The Sound of Music at Bartley Ranch Outdoor Amphitheater. The day before was her late mother’s birthday. She got the group together to go see that show in memory of her mother. It was a special memory of my mother also. It was the first movie I saw in a movie theater when I was 4. I remember that day –  a dentist appointment in Oak Brook, then such an awesome movie for my first one, and just me and mom (the luck of being the oldest girl!)

The entire group, minus photographer, Vince.
Amy and Scott, who we bought our house from, Joyce and Vince who were our next door neighbors, and then Scott and Amy moved back and bought Joyce and Vince’s house, so they were our neighbors too! Photo by Kathy Zodiaco.
Joyce, Vince, and their daughter Kathy. They are,such lovely people to have in our lives!

And now a memory from just a year ago: Ales for ALS. Our local Great Basin Brewery brought Buster 4 back. For every pint sold they donate $1 to ALS TDI.

Find your own participating brewery here: http://www.alesforals.com/brewers.aspx

On a totally different subject, but one that makes my life easier and less messy: new packaging of my feeding formula.

 On the left, Jevity 1,5 in a can. The new packaging is on the right. 

For about a year now, I have been feeding myself with the cans. They are awkward to pour into the feeding tube, especially with my lazy eye 😉, which causes depth perception problems especially when I am tired or fatigued which is often. The cans also drip, and make a mess on whatever surface you set them on. So the new packaging is great – easy to pour and resealable too. It is also easier to carry around. So only 12 messy cans to go – that is two days. And then all my messy meals in the first year of my feeding tube will be a memory too.

It is wonderful to be able to eat without dripping or making a mess. At least I can hope it will be less messy! Of course. Jonika used to call me MAM for Messy Aunt Meg for my tendency to spill food on my clothes, so it may be hopeless!

Ob la di, ob la da, life goes on.

Meditations on Hope and life goes on

This week I meditated on hope. There are multitudes of quotes on the topic.

Lord save us all from…a hope tree that has lost the faculty of putting out blossoms.   – Mark Twain

The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription.  – Norman Cousin

The sickening pang of hope deferred – Walter Scott

Hope is an echo, hope ties itself yonder, yonder  – Carl Sandburg

I believe the last quote is the most appropriate for ALS patients today more than ever. It used to be a totally hopeless disease. But now there is so much research going on, and new drugs in the pipeline, that ALS patients have hope. But every day people are dying from this disease and an effective cure is still years away.

After researching stem cell treatment and talking with both my Reno neurologist and the head of the UCSF ALS Clinic, we decided that the procedure was both too expensive and too risky. I am happy that Freddy got such positive results. But the chances of me seeing similar results is very slim and to me not worth the associated risks.

I definitely felt the sickening pang of hope deferred but some nice things happened this week too. Andy and I attended a book discussion and signing at a local Reno bookstore, Sundance. The author was Laila Lalami and her new book is The Moor’s Account. Her book won the American Book Award, was a Kirkus Reviews Best Book of the year, is nominee for the Man Booker Prize, and is a Pulitzer Prize finalist.

The book is about the imagined memoirs of the first black explorer of America. He travels to Florida as the slave of a Spanish conquistador. The book is historical fiction and the book discussion was very interesting. Laila explained that the historical facts she based her novel on were from the notes kept by the treasurer of the trip. That is when she said, “That’s what made me realize that we may not know when we are living in historic times.” So people that are writing about current events are very important at all times. That means journalists, President Trump. She discussed how colonization affected her. She is from Morocco. Her parents were both readers and she grew up in a house full of books. She was sent to French schools because of the French colonization of Morocco. When asked why she doesn’t write in Arabic she explained that there are so many dialects that not everyone would understand. She said she is most familiar with Egyptian Arabic. It was interesting to hear her say that she loves to write in the desert to get out of busy Los Angeles where she is a professor of Creative Writing at the University of California at Riverside. She studied linguistics aside from her major in college because she was interested in it. She is obviously a gifted linguist herself and that helped her write about a man who is also a gifted linguist. The man wearing the hat, standing behind her in the picture is from Morocco too and he and his gal had just returned from Morocco earlier in the week, so they had interesting questions. I am half way through the book and so far it is wonderfully written and a very compelling story. 

Laila signing her book for us.
Andy with the book and the author, who graciously stood up for the photo with him. I shared this photo with Andy’s English teacher and she wants to put it in the yearbook.

We also went to another UNR basketball game and this time they won and are at the top of their conference. 

In this photo they threw the cheerleader so high she is not in the picture!

My friend Erika drove up from the Sacramento area to attend aqua fitness with me and have lunch with Stan and me. I love it when we can get together. I wish we lived closer together.

Erika, me, and Shelli Hall who teaches Aqua Fitness at 10:10 at Saint Mary’s Fitness Center on Mondays and Tuesdays.

Shelli is also a good friend of mine. Her son goes to the school where I worked. She came in to help me in the office once a week when I couldn’t talk. It was a great workout and Erika, Stan and I had a nice lunch at Josefs.

I also heard from two college roommates: Sue and Kelly, pictured below with me.

So nice to get back in touch with old college roommates.
The ice is melting this week.

I received some photos from my 2nd cousin Sarah in Washington state that took me down memory lane.

Sally (Sarah) as a teen visiting with my mom, her godmother, while I ham it up and smile at the camera

Sarah and her siblings lost their brother Peter to ALS also.

Relaxing in my bedroom late in my high school years. I needlepointed that pillow. I wonder what happened to it!
Visiting Sarah in Boston with Lucy, Sarah’s sister
With my siblings dressed up for some event.
Visiting Sarah at UCLA where she got her graduate degree in physical therapy

I found our daffodils starting to come up in our front yard which means spring is coming,  although technically a month and a half away.

Hope is one of the principal springs that keep mankind in motion – Thomas Fuller

Hope and patience are two sovereign remedies for all, the surest reposals, the softest cushions to lean on in adversity. – Robert Burton

The important thing is not that we can live on hope alone, but that life is not worth living without it. – Harvey Milk

Hope… is not a feeling; it is something you do. – Katherine Peterson

I wish all ALS patients and caregivers hope that is not an echo, tying itself yonder, yonder.