I am honored to announce that I have been chosen to be a Patient Fellow for the 28th International Symposium on ALS/MND in Boston in December. The other fellows are an auspicious group that I am looking forward to meet and work with. You can read all about us here: https://alsmndpatientfellows.wordpress.com We were chosen to represent all ALS/MND patients (ALS is called Motor Neuron Disease in many parts of the world).
The selection committee is also impressive. You can read about them at that link too.
We (patient fellows and committee) will be working to get ready for the conference by picking the sessions we will attend and planning how we will share what we learn. This is a new program to have researchers have more interaction with patients and have patient input into the research directions. I look forward to sharing exciting new research through this blog.
I will be able to provide updates as the conference approaches. An added bonus for Stan and me is we can visit relatives – my Uncle Bill and Aunt Candy before the conference and my godmother Aunt Alice for a couple of days after. I also hope to see my mom’s cousin Len, who helped me with the family history for the UCSF study.
This week I got an appointment for my surgery for installation of a port for the new drug Radicava. It will be Tuesday October 10th. We had our monthly ALS Association support group meeting and Nurse Educator Meg gave a presentation on Radicava, the first new drug for ALS in 20 years.
She told me that Option Care, who will provide the drug, is now researching exactly what my insurance company will cover, and she thinks they should be ready for me to start the new treatment right after I get the port. Of course I would start earlier by IV if I can.
I also got together with dear friends that I worked with 30 years ago, Sunny and Lisa.
We had so much fun reminiscing about all the people we used to work with. We also enjoyed getting caught up with each other and plan to do so monthly.
And again on Friday, Stan missed a call from Option Care at 5:20 P.M. When he called back he got the answering service. So again, I am waiting through a weekend to make more progress. But at least there is still progress to hope for!
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.
With Natasha, another Gifted and Talented teacher at CRES. Her daughter and daughter’s boyfriend walked too.
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.
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 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.
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.
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.
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.
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.
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.
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
Back to normal life. How do I write about normal life after a trip like that? It took an amazingly long time for me to feel rested and back to normal – about a week. First of all I want to thank our friend Chuck who came over to remove snow while were gone. He texted us this photo:
Also thanks again to my dad for watering my plants and bringing in boxes. Also thank you to Stan’s dad, John, and step mom, Cathy, as well as my dad, John, and step mom, Anita, and friends, Adriana, Phil and Josh, for hosting our son, Andy, while we were gone so we could take an awesome 25th anniversary trip.
I will categorize this into:
I had my Mic-key button and tube replaced because 3 months had gone by and the balloon that holds it in place usually leaks slowly and needs to be replaced 4 times a year for people who are active like me. I texted my awesome nurse practitioner. She said she would be happy to replace it.
My husband watched and in three months they will observe him changing it and after that we will be able to do it at home. (Categorized into Love because I love my nurse practitioner and I love my supportive husband).
We had arranged for Stan’s cousins Lisa and Dana to visit our niece Jonika in Hawaii. Lisa texted this awesome photo of Jonika and Ollie.
We also got more snow which I love.
Andy was able to practice snowboarding down our driveway.
It’s great to have a teenager to help with shoveling. And a snow day – no school, so he has time to help.
Here is a new photo of my rainchain. It is awesome even in winter.
Andy and I were invited to attend a rehearsal of the Reno Philharmonic Orchestra on a Saturday morning.
There were two visiting teenage soloists.
It was nice to share this with Andy. The music was beautiful. It was interesting for Andy to see how a professional orchestra rehearsal goes. He was able to pick out the problems that the conductor pointed out to the orchestra before she even started speaking. He might make a good conductor someday.
I got back in touch with a dear old friend from a job I had over 25 years ago.
My monthly shipment of formula food was delivered and I asked Andy to stomp on the pillows of packing air with me.
This will become a monthly ritual. It is pretty fun and loud.
We bought tickets for 5 basketball games at University of Nevada and went to the first one on Saturday January 21. It was a close game between our Wolf Pack team and the Fresno State Bulldogs. Sadly our team lost. Even with me “yelling” DEFENSE! With my phone text to speech app.
Regular readers will remember the hand delivery post office in the Galapagos (ship passengers leave postcards with no postage and each new ship that comes through checks to see if any passengers can hand carry mail back home). We were finally able to deliver the one we carried back to the guy that wrote it at his firestation. We had tried before and no one was there.
We had fun remembering the same itinerary with him.
I have also returned to aqua fitness 3 times a week. It feels good to be getting back in shape. Cousin Lisa went with me once and Stan goes once in a while plus my friend Alice goes regularly and I am getting to know some of the other regulars.
On the last Thursday of the month there is an ALS Support Group and this is the first time I went. Stan went with me too. It was great to meet new people in our area who have ALS and their caretakers.
The ALS Association’s Care Services Coordinator came up from Las Vegas. She is new, and has a nursing and social work background. I really liked her.
A friend of ours, who plays guitar at our favorite Mexican restaurant, called Stan when we were waiting for our flight out of Ecuador. He had heard that the son of the owner of another great Mexican restaurant in Reno had gone to Mexico for stem cell treatment for ALS and he had great results. Then when we got back Stan got a call from Freddy. He came over to tell us his story.
He said he couldn’t swallow or talk and could hardly walk. He also had a lot of pain. And the day after treatment he said he could walk and talk and eat again and the pain was gone. He told us about all the treatments they gave him. That gave us hope.We emailed the doctor all my health records. And we haven’t heard back yet.
We checked ALSUNTANGLED and began to research stem cell treatment for ALS. Not everyone gets dramatic results like Freddy’s.
A week later we met Freddy and his wife Vera at a restaurant to learn more about his stem cell treatment.
We are going to meet with my local neurologist on Monday to see what he thinks.
Through all this I have a daily struggle with saliva in my mouth. I have a medicine that is a drop under my tongue and tastes horrible if it gets on my tongue. Sometimes it will make my mouth unbearably dry as in lips stick to teeth, other times the front of my mouth is full of saliva that I can’t move back to swallow. Stuffing one of my pretty napkins in my mouth helps but I know it is not attractive. I do realize this is a minor inconvenience I can live with, compared to what other people I know are going through.