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.

 

Beautiful Camping then the Best Laid Plans….

The publishing delay has ended. My blog is back!

On Memorial Day weekend we camped on our friends’ property in Plumas County. After so much snow this winter it was very green with lots of wildflowers.It was a relaxing weekend, with fun activities thrown in.Andy and Stan rode dirt bikes.

Jim and Peggie rode mountain bikes.Jim played music.And so did Steve and Gary.

Alice, our host, with Timmy 

Chuck, also host relaxing in camp. Many of us got a lot of reading done too.

Our motor home in the early morning light.

A pond that appeared after the big snow winter was fun for throwing rocks into.Peggie and I took a hike to see the wildflowers and all the green. We saw a couple of snow flowers.

It was very green, greener than most years.

Then we saw Andy riding by,followed by Stan.

Some of the beauty we saw.

We also hung out at Steve and Dianne’s cabin down the road.

Ian watching inquisitive Adi, his son.

Dianne with her grandson, Adi.

Ian playing his dad’s guitar, with dad Steve at his side.

We even got to have a fire, the first in many years. It was finally wet enough that the fire wasn’t going to risk starting a wild fire. My camera obviously focused on the flame.

All in all a weekend with good friends, good food (as I was told), and good relaxing and fun.

In the week that followed I got confirmation that I have the C9orf72 gene mutation that causes ALS – no surprise, considering that my mom had been confirmed to have it too. This now allows me to participate in research specifically for this gene mutation. This is what I feel I can do for my son and my niece and nephews and cousins. The researchers want to first see what the different forms of the mutation do to the outcome of the disease. Some people get ALS, some people get Frontal Temporal Dementia (FTD), and some people get both. There are also people with the mutation that get no disease at all. My family has a long history of dementia also. Getting the genetic confirmation has put into motion my enrollment in two studies, one in Los Angeles and one in San Francisco. It is exciting to be involved in research that could lead to a cure for this particular genetic form of the disease. The gene is dominant, meaning that offspring have 50% chance of inheriting the mutated gene.

On Wednesday, Andy had his Spring Orchestra Concert at school.Andy with his proud parents after the concert.

On Thursday, Andy stayed home from school, after throwing up in the middle of the night and most of the day. It was unfortunate timing – the week before final exams. He did go to school Friday, and Stan and I drove to San Francisco.

On Friday, I had my second botox injections in my parietal saliva glands. I had noticed the effect drop off in the last few weeks. The first dose did let me cut the dose of the saliva reducing medicine in half. This time they did a higher dose and both upper and lower part of the glands. As I write this I am already noticing that I can cut my dose of the medicine even more. 

Next came my ALS clinic visit. I first met with the speech therapist. She gave me some exercises to keep my TMJ muscles flexible so I can keep my mouth closed without effort. Then I met with nutrition and they were very happy that I am maintining my weight. I met with the respiratory therapist and she shared the results of my overnight pulse ox test, which were disconcerting. The results show that I am desatting (blood oxygen levels getting dangerously low) several times while sleeping, so much so that I am not getting any REM sleep. I do wake up a lot. No wonder I have had so much fatigue. I use a bipap, and this resulted in an order to increase my bipap pressures. We also found that I have vocal cord involvement impeding my forced vital capacity breathing tests. Air does not flow smoothly when I am making an effort. I met with Physical Therapy and my neurologist, this time Dr. Catherine Lomen-Hoerth, the director of the ALS clinic. There is no sign of progression to my limbs yet. Dr. Lomen-Hoerth hooked me up with the UCSF folks researching the C9orf72 gene mutation.

All in all, it was a good clinic visit. My disease is progressing, and I am uncomfortable at times (needing cough assist or dealing with saliva issues) but I still feel incredibly lucky to be able to self care this long.

We finished at the clinic at about 5 P.M. and we walked to dinner about 5 blocks to a brew pub called Social. We had big plans for the weekend ahead. Our son Andy had driven to the Sacramento area after school to our friends the Peters’ house. Then he rode with them to San Jose, where we met them about 8 pm. Andy was running in the San Jose Giants race at 7:30 Saturday morning. Erika was going to run too, but couldn’t due to injury. Then on Saturday afternoon we were going to Oakland to watch the A’s vs Washington Nationals baseball game, and on Sunday the Young Faces of ALS National Corntoss challenge in Piedmont – Andy and Stan were a team, as were David and Paul. 

Saturday morning arrived with Stan throwing up at 5 am. Erika, along with her daughter Maddie and Maddie’s cousin Jacqueline, took Andy to the San Jose Giants stadium for the race. I stayed at the hotel to help Stan. I also had to go to CVS to get some medications he forgot to bring. Erika texted photos (thanks girlfriend!)

Andy, ready to race 5 miles.

After the 5 mile race with his medal and Madison Bumgarner bobblehead. He got second in his age group. Not bad after being sick two days before!

Then Andy went to the A’s game with the Peters and Paul’s dad. I stayed at the hotel and relaxed, with the A’s game on TV on mute, listening to Stan talk like a pirate he was so miserable. (Lots of Argh Matey and You Scurvy Dog, as you can imagine.) I was reading a book about Captain Cook so the language fit right in. He threw up until noon and had diarrhea too. The lucky ones at the baseball game saw an exciting one with lots of home runs.

Stan was not getting better so I texted our friend Peggie, who is a cardiac nurse practitioner. She recommended the emergency room for fluids. I could not convince him to get up. When everyone got back from the baseball game, I asked Paul to come help. He was able to help Stan get dressed and out of bed, and the hotel brought a wheelchair. We left the kids at the pool, and drove to the closest emergency room.The kids also had permission to order room service dinner and watch a movie.

We went to Santa Clara Valley Hospital and there was construction at the ER entrance.Paul had to go in and get a wheelchair for Stan.

The Emergency Room in San Jose was an interesting place to be on a Saturday evening. It was really busy. Stan was triaged and then we waited. They took him for an x ray and then he had an EKG. Then more waiting. He became delerious, with his eyes not focusing and trouble keeping them open. Paul talked to the Physician’s Assistant in charge of ER intake, saying that we were more concerned about him now than we were when we came in. This bumped him up in triage. He was brought to a cubby behind the checkin and they took his vitals. I wrote on my boogie board, “He needs fluids STAT” and showed it to the PA and he responded right away. An IV was started and they gave him anti nausea meds. He was finally moved to an ER room. At 1:30 in the morning they decided to admit him. I texted Erika, and the angel she is, she came and got me.

I can’t thank Paul and Erika enough. Without their help it would have been a nightmare. On Sunday morning Stan was still in the ER. We were in the San Jose Hilton and Apple’s Developers Conference was starting the next day at the convention center connected to the hotel, so there was no way we could extend our stay. Erika took Andy to see Stan, while I stayed back at the hotel and packed everything up. I checked out and gave Andy’s bag to Paul who was hanging out with the kids in their hotel room. Andy would ride back to Sacramento with them, so he could drive home for school the next day. Andy and Erika had returned to the hotel, so Andy rode back to the hospital with me. Erika would pick him up there. By now Stan had been moved to a room. I was glad Andy was with me because it was a maze to find his room. 

We had to bow out of the Corntoss Challenge. I want to thank all of our donors, and I am sorry we could not participate.

  • Kathryn Maple Whitten
  • Joyce and Vince Zodiaco
  • Sam and Karen Hancock
  • Haley Mruz and Drew Sheehy
  • Steve and Dianne Lintz
  • Our biggest challengers (the Peters) 
  • The Silvola’s (my second cousin’s family)
  • Our Connecticut cousins
  • Barb Farrell
  • John and Anita Saunders
  • Pete and Jenna Saunders
  • Tim and Joannie Montagne
  • Alice, Chuck and Rita Hilsabeck
  • Marc Corrado

You all helped us raise over $1000 for ALS TDI, the nonprofit company that has a very promising ALS drug in the pipeline – truly awesome friends and family.

When I got in to see Stan, they were talking about releasing him. Erika texted that she was taking the kids to lunch and she would pick up Andy. Then I sat with Stan for the long wait for discharge. And a long wait it was. Andy went to a park after lunch.

We decided that Andy should head back to Sacramento with the Peters, so he could be sure to get home for school the next day. I texted my neighbor Hella, asking if Andy could stay with them (he doesn’t like to stay alone because he sleeps through his alarm). Hella’s reply was “Sure!!” It’s a good thing we made those arrangements because Stan was not released until 7 pm. I was exhausted from not enough sleep and Stan was not feeeling that great so we only drove a half hour and spent the night in Pleasanton. Then we drove home Monday – still a rather difficult drive because Stan still felt ill and I was too sleepy to help. But we made it home safely, arriving just after Andy got home from school.

Andy finished school this week, and after four days of finals, a very busy weekend before, and illness, he pulled off the grades he had set as his goal – all A’s and B’s. We are very proud.

This week we also got a new Polaris side by side so I won’t have to stay home when the boys go out on their dirtbikes.

Busy busy busy and not all as planned but it worked out in the end. Lots of love, connection and hope. And I did remember a dream last night so I am having REM sleep. And best of all, I avoided the stomach virus!

Hope, Love, and Connection and lots of good stuff

This was an eventful week: lots of ALS related good stuff, and a family wedding.

ALS good stuff #1: HOPE

Stan and I participated in a webinar from MT Pharma, the manufacturer of the newly approved ALS drug, Radicava, which should be available in August. It has been shown to significantly slow the progression of ALS. ALS patients can sign up for email updates at radicava.com. In July there will be a physician’s form for neurologists to use to enroll their patients. Then MT Pharma will work with patient’s insurance companies. The drug will be an hour long infusion every day for two weeks, then two weeks off, two weeks on, etc. It is exciting and gives hope because it’s the first new drug for ALS in 20 years.

ALS good stuff #2: LOVE 

At our ALS Association of Nevada Support Group meeting on Thursday another ALS patient, Deb, who you may remember had the awesome car wash mitts on her wheelchair foot rests,

talked about her caregiver, who brought a sheepskin blanket and she loved the feel of it and found it very comforting. Her son took her to Build a Bear and she picked a panda with sheepskin-type fur. Then her son decided to make two so another ALS patient could have one. She presented it to me! The adoption certificate says it was built for mom’s friend. 💜 He is so cute and comforting and that was absolutely an act of love.

ALS good stuff #3: HOPE, LOVE, and CONNECTION

On Saturday we had the Reno/Sparks Walk to Defeat ALS and the weather was absolutely perfect: blue skies, no wind, temperatures in the 70s. Caughlin Ranch Elementary School (CRES), where I worked, formed Team Meg. This was another act of love and I appreciate the support so much.

Amanda, CRES mom and Team Captain, with her daughter Capriel and her husband Tony.
Almost all of Team Meg. It was hard to herd everyone in for the photo
With Rene, who now has my job. We worked together for several years and we are neighbors. And yes I brought the panda! My mouth feels better with a napkin in and I don’t care how it looks. Plus I don’t drool. Rene also brought a bunch of bright green ballooons, which I loved.
Marci, another CRES mom, with her youngest.
Holly, one of the Gifted and Talented teachers at CRES
Sandy, a Special Education Resource teacher at CRES 

With Natasha, another Gifted and Talented teacher at CRES. Her daughter and daughter’s boyfriend walked too.

With April, an Autism Strategies teacher at CRES. I was writing a note to April, not conversing with the panda!

Here you can see the sign that the panda was wearing: Ride to Defeat ALS, Never Give Up

April and Laura. I gave Laura my camera to be the official Team Meg photographer. Thanks also to Stan who took the pre-walk photos.

Mark, the CRES lunch manager with his daughter, who I put in charge of the panda during the walk. 

Andy, former CRES student; Afek, current CRES student; and Shefer, former CRES student

It was so nice to see so many people I used to work with and around and to meet their kids too. There were also other staff members and parents who contributed but did not walk. Thank you CRES community – you are the best.

Stan’s cousin Lisa also came out to support my walk, although she has her own health issues that make walking diffucult.

I met some other ALS patients during the walk. Linda and Andy are my new friends. Andy has ALS.

I talked with other ALS patients and family members, some that I had met through the support group, and some that I was able to tell about the support group. This included one mom in a wheelchair who spoke only a little English. When I heard her son translate what I wrote into Spanish for her I began writing in Spanish, with a little help from her son. I was able to tell them about the support group too and the son put the information in his phone.

The entire walk raised over $25,000. Truly a morning of love, connection, and hope for what that money can do to defeat ALS. You can still donate to Team Meg at http://web.alsa.org/site/TR/Walks/Nevada?team_id=359152&pg=team&fr_id=12347

Other good stuff: Love (Family Wedding)

We went home from the walk and got ready to go to a 4 pm wedding in Graeagle, California (about an hour and a half drive). Lisa rode up with us. The groom, Clint, is Lisa’s step brother. 

Uncle Keith and Gloria, the stepfather and mother of the groom
Stan and Lisa heading for their seats, happy to be able to drink beer during the ceremony.
The best man is Vince, the brother of the groom.
Clint and Ashlee Jade with the Presbytarian minister from the Carson City church Clint’s family belongs to.
Andy and Stan during the photos after the wedding
The newlyweds, Clint and Ashlee Jade Treadway
Clint’s dance with his mother, Gloria
Lisa with her dad, Stan’s Uncle Keith

Cornhole fun and practice for the National YFALS Corntoss Challenge to END ALS on June 4 to raise money for ALS TDI. Stan and Andy are a team, and they don’t want mom on their team. I had fun but I couldn’t even hit the board! Please consider a donation to Stan and Andy’s team for the Young Faces of ALS
http://yfals.als.net/page.aspx?t=2413

It was a fun and beautiful wedding with connections with family we don’t see often enough. I also got to know Gloria’s sister-in-law who is a physical therapist who has worked with ALS patients. We will keep in touch.

We stayed at the Chalet View Lodge in Portola so we wouldn’t have a long drive after the wedding. It was a lovely resort and there were a couple of bonuses included: more corntoss practice before breakfast and we ran into an old friend.

With Bill Erlach, who was 10 when I first came to Reno and stayed with his family.

Bill Erlach and his wife Alexis were staying at the resort with a group of Bill’s high school friends on an annual weekend event where they go to a different Sierra Resort each year. They were enjoying golf and bicycling. I love running into old friends. I shared with Bill that I remember going on a hike with him and his dog Remington, when he was 10. They lived south of Rattlesnake Mountain at the time and we hiked through fields towards Rattlesnake (an area that is all developed now).

It was truly a full week of Love, Hope, and Connection.

Mindfulness Based Stress Reduction 

Stan, Andy, and I have had a lot of stress for quite a while. Stan’s illness had us calling 911 in the middle of the night or driving him to the Emergency Room more times than we can count. On top of that he had several planned surgeries, so for many days Andy would do his homework while visiting Dad in the hospital. 

Andy was visiting his grandparents in Las Vegas a couple of years ago and his grandpa was rushed to the hospital in the middle of the night.

And then my diagnosis with ALS shook us to the core. Andy has had a lot of anger, which is understandable. 

Twenty years ago I had the opportunity to mentor two foster teens. This was before Big Brothers Big Sisters came to Reno. One of the teens I mentored is Keia, who is now 37 and has just become a yoga instructor and has her own business here in Reno where she goes to her client’s residence for tailored yoga sessions focusing on breathing and guided meditation: holistichealthnv.com
  

I asked her about a family healing session and we were able to schedule that the first week of Andy’s spring break.

She had us do some basic stretching to start and then did a guided meditation for relaxation. And then she talked about using mindfulness to control anger. And showed Andy the Eagle yoga pose which is also great for dealing with anger.

The attitudes and intentions that are most important for mindfulness meditation include:

  • Non-judging: observing what’s actually happening without adding emotions, fears or prejudices to it.
  • Patience: understanding and accepting that sometimes things take more time than we’d like and must unfold in ways we can’t fully control 
  • Trust: trusting yourself, your basic wisdom and goodness, your feelings and  “intuition,” and trusting the same in others
  • Having a beginner’s mind: (open-mindedness): not letting what we think we already know affect us seeing things for what they are
  • Acceptance: recognizing and allowing what’s happening first without trying to change it, giving us a clearer picture to work with when it comes time to act
  • Non-striving: trying less and being more; allowing your experience to unfold without fighting against it or wishing it was different
  • Letting go: recognizing that everything changes, being willing to let go of unpleasant and old beliefs, and also accepting that good things can’t necessarily last forever.

Source: draxe.com/guided-meditation

    After the session gag picture 😃

    I am so proud of the new Keia!

    Keia came back that evening for dinner and we watched my favorite movie, and Andy’s too: Short Term 12, which is about foster kids.
    This was a particularly good week to have some mindfulness training. We had 5 doctor’s appointments between the three of us, an interesting video conference for market research on packaging for a new ALS drug, as well as an ALS Support Group meeting on Thursday. And then on Friday we went away for a few days. We also fit in the Toytopia exhibit at Wilbur May Museum.

    Boys and toys
    Andy built a smaller version of this for his 4th grade report on George Ferris who was a Nevada native.
    When the girl left, Stan and Andy built an elaborate track from the upper right to the lower left, then little kids came over and said again, again because they loved watching the balls go through the track.
    Stan showing off his etch-a-sketch circle drawing skills.

    The exhibit also had classic video games such as Pac-Man and Space Invaders. It was fun to share those with Andy.

    At the ALS Support Group meeting on Thursday, we had visiting speakers from Vocasso to tell us about the wireless headsets they are building  that will generate speech from electronic signals from the speech forming muscles. They wanted input from us on their product for ALS.

    Brett and Ryan from Vocasso

    Deb showed off the car washing mitts she uses to cover the cold metal plates that her feet are on in her wheelchair. Brilliant idea!

    Andy came along to this support group meeting, his first. He didn’t want to come, but he said it was fun. The two other ALS patients there had great stories and were funny. The guys from Vocasso were great too. We  met them for dinner that night too.

    And then went home to pack.

    Stan and Andy will be participating in a Cornhole tournament in June in the Bay Area to raise money for Young Faces of ALS, a part of ALS TDI. I have several friends who were diagnosed here ALS at very young ages. Please consider a donation to research to end this awful disease, while supporting my boys in the Cornhole Tournament here:  http://yfals.als.net/page.aspx?t=2413

    Thank you for helping to wipe out ALS.