You know when you work all day and then lose most of your work? That was my Sunday. I will post as soon I can rewrite it.
Last Thursday, November 23, was Thanksgiving in the U.S. It is a traditional four day weekend but our local school district added the day before a few years ago, so now it’s a five day weekend.
We drove to my sister Beth’s in California on Wednesday. She lives south of San Jose, in San Martin. My dad and stepmother, Anita, also drove from Reno. Beth and her husband Jamie have a beautiful home overlooking the CordeValle golf course and a vineyard. Jamie’s sons Phillip and Jack were there too. Because of not quite enough beds, Stan and I stayed at the golf club.
We had a lovely Thanksgiving dinner at the club.
We went around the table and each said one thing we are thankful for. Among the comments: indoor plumbing, antibiotics, the first amendment, and the family we were sharing dinner with. Although it is hard to prioritize what I am thankful for, I said I am thankful to still be able self care after nearly two years with ALS. That is not just selfish because it impacts my son and husband greatly. I also seconded the comments about being thankful for everyone at that table. In addition, I am thankful for all of our relatives who we were not with on Thanksgiving.
I am thankful for my friends. Erika and her daughter Maddie came up from Eldorado Hills and spent Friday night and part of Saturday with us. Andy had to sell Christmas trees at his Boy Scout lot at Shoppers Square. Erika bought a tree and I bought a wreath. We will be with Stan’s dad and stepmother for Christmas so we don’t need a tree.
Erika even hung the wreath for me.
There are so many friends I am thankful for: the ones from my elementary school, the ones from high school, the ones from college and grad school, and all the friends I have met since I moved to Reno, and also the ones I met online that have become flesh and blood friends.
I am thankful for Radicava and the hope it brings for slower progression of my disease. I am thankful for all the researchers around the world who are working for an end to ALS. I am thankful for all the people who work in ALS clinics to help ALS patients have better quality of life. I am thankful for all the wonderful people with ALS and the wonderful caregivers I have met through ALS fundraisers, Facebook, and our local support group. I am thankful for the people who facilitate our support group.
I am thankful to be a patient fellow for the ALS/MND International Symposium in Boston December 8th through December 10th. I again encourage anyone with questions or comments about anything related to ALS/MND that you want the researchers to hear, please send me your questions and comments. I will be your voice at the conference. Again, you can comment on this blog or on Facebook or on Twitter.
I am also thankful for a fun Twitter interaction. The father of neurology is Jean-Martin Charcot, a brilliant doctor in the late 1800’s in France who first identified and classified ALS, MS and other neurological diseases. Well, Jean-Martin Charcot is on Twitter and he shared my blog! I could not agree more!
I started Radicava Round Two on Friday. Our wonderful home nurse Pam supervised Stan doing the needle poke. Now he is signed off and can do it unsupervised. This time I will do 5 days on, 2 days off, and 5 days on, then 16 days off. I will try to get my swimming in on the off days because the needle stays in for the 5 days and it can’t get wet. I did go to aqua fitness three times last week and it felt great to be back. I had to keep my napkin in my mouth to breathe through my nose but it worked. Still trying Zyrtac for my allergies. My doctor at UCSF just recommended papaya enzymes to thin mucous so it won’t get stuck in the back of my mouth, available through Amazon, so I ordered them and they will arrive Tuesday. I was using Pineapple/papaya Enzymes from Trader Joe’s and that worked but then I noticed a pineapple allergy. It’s nice to know I can get papaya alone.
Saturday was Stan’s sister Terry’s birthday. She came by and hung out with us in the afternoon. She helped my allergy situation by helping to change the furnace filter. She also dusted the ceiling fan in our room. And she offered to come do deep cleaning when we are traveling in the next 2 months.
Today, Sunday is my sister Beth’s birthday. We will be with her on Thanksgiving. My Radicava schedule worked out nicely. My 5th day will be Tuesday and I may be able to go to late afternoon aqua. Then for Wednesday and Thanksgiving I don’t have to infuse.
It also works out for my trip to Boston for the ALS/MND International Symposium. We leave Dec. 6 and return the following week a few days before Round 3.
Speaking of that conference, all ALS patients and caregivers reading this, let me know if you have specific questions for the researchers. I will do my best to get them answered. You can comment on this blog or if you came to it through Facebook or Twitter you can comment there.
I plan to make sure they know it’s not just mice and test tubes, and ask about future treatments being accesible to tube fed patients as well as patients with lower breathing scores and lower ALSFRS and ALSFRS-R scores. And also the non plecebo trials going on at Duke should become the norm. No ALS patient should have to take a placebo. There are good records of historical controls that can be used.
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.
As promised, I reprised my Beauty that Killed the Beast costume for Halloween, and this time got pictures.
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.
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.
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.
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.
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.
It was a fun evening supporting our son’s school. We also scored a silent auction item.
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.
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.
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.
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.
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!
On a beautiful Saturday in October, we did something we have wanted to do for a long time. We rode the V&T Railway roundtrip from Carson City to Virginia City with friends.
There were plenty of characters dressed up to take us back over 150 years.
It was fun to look for wild horses and old mining facilities and it was also interesting to imagine traveling across the country by steam train.
Andy met us in Virginia City because he had to go to cross country practice. We got him a one way ticket for the ride back.
We hiked uphill to lunch at Cafe del Rio. There was a zombie group scavenger hunt going on so it was nice to be on the south side of town. Most of the competitors were in costume but not many looked like zombies. There were a lot of people running around though. After lunch we toured the Chollar Mine. The guide had interesting facts about the mining industry in Virginia City since the 1860’s.
After the mine tour, Stan and I had had enough walking and I had enough pollen, so we walked back and sat in the train car with all the other old tired folks.😕 The rest of the group hiked back up to C Street for ice cream.
Andy enjoyed the train ride back down to Carson City. When we got back to Carson we all parted ways and Andy rode with us to drive back up to Virginia City to get his truck. Even with my allergies it was a really fun day.
Now we will stop in present day for a moment. It was time for my three month feeding tube change and my sweet and funny husband changed it for me.
Now the giant leap into the future: I finally started the first new drug for ALS in 20 years. I call this a giant leap into the future because there are so many promising new drugs in trial or close to trial, so future ALS patients should have treatment options.
We got approved to start home infusions with only one training session because Stan was an EMT. And our friend Alice is a retired nurse and she is willing to be the backup.
Our Option Care nurse, Pamela, was an excellent trainer. She explained everything and instructed us in the need for sterility since the drug is going into my Vena Cava through my port. She placed the infusion needle in my port and I was ready to go. Stan learned how to do the infusion.
I am so happy to finally be on this drug. The reported 30 % reduction in progression of ALS is huge. The only other drug for ALS available before this only extends life for a few months.
For all United States ALS patients still waiting to start, I recommend that you be your own advocate. Call your nurse educator. Call Searchlight Patient Support and ask for your patient ID number and your case number. Then ask to talk to your case manager for the status of your approval. You also may have to call your insurance company, your neurologist’s office, and the infusion company. Make sure that you tell everyone that every day makes a difference in this disease. The local infusion company wanted me to wait until next Wednesday to start three required days of training. But we asked if there was any way to start sooner, for instance, could I come in to their facility? And the answer was, “Yes, tomorrow.” Woo hoo! The pharmacist did call Stan to talk with him and verify his training.
Love of friends and family, connection with friends, family, and medical professionals, and hope that this drug will allow me to see my son become a man and allow me to be around for the next ALS drug that comes along – potentially halting or reversing the disease. Let’s hope.
LOVE, CONNECTION, HOPE!
If you are on Facebook with me then you already saw this. I was challenged to post 7 Black and White photos of my life on 7 consecutive days with no people and no explanation. Here they are:
This week I had my port installed on Tuesday, to be ready for Radicava infusions as soon as my infusion supplier sets it up which hopefully will be this week. My surgery was scheduled for 4:40 pm. They told me I could eat until 6 am, so I got up early and did that. Around 8:45 I got a call asking if I could be there at 9:30 for 11:30 surgery. So I quickly showered and got there at 9:30.
When the nurses heard I ate at 6, they had to go talk to the anesthesiologist. They decided to do another surgery before mine and said they would try to do mine around 1 pm. So we waited. 1 pm came and went. Stan went to get lunch. They told me my surgery was back on the schedule for 4:40 pm. I asked if I could have more allergy medicine and the answer was no. I actually cried at this point – I was afraid of aspirating on post nasal drip going into sugery. If I had known I would be there all day I would have brought my meds. But they finally said I could take my own Allegra. Stan was having lunch over by the CVS pharmacy and the nurse called him and asked him to pick up some Allegra. He came back and I took it with just a little water. And still we waited. When 4:40 came and went I felt like punching out a few more teeth on that kid hanging with me, although Stan pointed out that it wasn’t his fault, so I controlled that impulse. Ultimately my surgery started after 5 pm. The surgeon apologized for the mix up and all went well.
Then on Wednesday, we found out that my infusions are being held up by the need for a signature of the contracts manager for the infusion company, who was gone all week. I complained that it is 2017 and anyone can sign anything anywhere anytime. But again, we waited through a weekend to make more progress. Radicava Ridiculousness!
We have received great support from MT Pharma America, the drug company. The long drawn out waiting period has been hard, but hope in an infusion bag is closer than ever.
You belong among the wildflowers
You belong in a boat out at sea
Tom Petty – Wildflowers
Perhaps a better song to quote is U2’s Sunday, Bloody Sunday. The tragedy in Las Vegas was so unthinkable and horrific. We watched the first episode of Ken Burns’ The Viet Nam War this week. A veteran was quoted saying that there is a reason we are the dominant species on this planet and that people say the military turns boys into men, but no, he said, it is just a finishing school. That was a chilling comment to hear after Sunday. In another movie we watched recently there were mountain lions (scary) but the humans in the movie were much scarier. Our whole state was impacted by the tragedy Sunday. It is sad that our country can’t do more for mentally ill people and can’t come to consensus on gun safety. #BanBumpStocks
Northern Nevada supports you Las Vegas. The love that poured out among those fleeing as well as the first responders and hospital staffers, as well as the response from the community at blood donation sites in both Las Vegas and Reno, shows the side of humanity I would rather focus on. #VegasStrong #NevadaStrong. I wish that everyone impacted somehow finds peace and recovery soon. I know it will be a long time coming. It affects every security guard in casinos in Las Vegas and in Reno, and many, many other walks of life too and every big city outdoor music festival, as well as the friends and family of the victims. And every victim belongs among the wildflowers or on a boat out to sea, instead of being killed by a human beast.
We also lost a rock and roll icon, Tom Petty, a week ago. I like his music and Stan and I saw him live in Reno many years ago. I chose those two lines from his Wildflowers song not only for the victims but also because I love to be outside among the wildflowers, but my seasonal allergies are really bad this year. I can’t cough or blow my nose or swallow well so I am beholden to my cough assist and suction machine. If I could go on a boat out to sea I could get away from the pollen.
I have had a lot of thick saliva. From the British MND Association website I got a PDF about dealing with saliva in ALS/MND.
I have been taking Pineapple and Papaya Enzymes to help with breaking up the thick saliva. The publication said pineapple juice could be swabbed in the mouth to help with the same thing. We had some pineapple juice, so I swabbed some in my mouth. I got a very quick reduction in thick saliva. But it only lasted about 5 minutes. So then I swabbed some more. And then some more. And soon I had swollen lips and felt as if I OD’d on antihistamines. This could be an allergic reaction. It turns out pineapple is a strong antihistamine. Even if it is not a pineapple allergy, I do not want to OD on antihistamine. I had been trying various combinations of anantihistamines and decongestants and expectorants, to find allergy relief and trying to keep track in my head. But there are way too many variables to keep track of. Plus I really want to find out which med is making my eyes uncomfortable. I messaged my doctor at UCSF to get her input. She agreed that I can methodically try discontinuing one med at a time, and stay off any discontinued for at least a week. I decided to start with Neudexta. I can stay off it and see if I am having psuedobulbar affect (inappropriate laughing and crying). If I am not having that symptom, then I can discontinue it completely. Four days off so far and nothing inappropriate. I am also documenting when I need my eye drops. Yes, I still need them, and yes I am still having allergy symptoms (sneezing – works better than cough assist! I appreciate that I can still sneeze), itchy eyes, runny nose. This could all still turn out to be my seasonal allergies. I am still hoping for a deep freeze soon!
I became empowered this week and decided to make my own phone calls. Stan does not have patience to wait for customer service to pick up and he gets frustrated with being passed on to another hold and phone tag is also frustrating to him. So I sat down with my Speech Assistant on my phone with my wireless keyboard and used our house phone to call our insurance company. I had pre-typed “My name is Margaret Macdonald. Please be patient while I type.” I waited on hold a long time and then I got the screener. I explained that I was calling because the accumulator that my providers see says I have not met my maximums but I have. So my doctors make me pay and then we ultimately get refund checks. Then I was connected with someone who could help. She said she could see the problem and she would send it their IT department. Then she said, “is there anything else I can help you with?” And I said, “yes. I am waiting for approval for a new drug and with my disease every day counts.” She said it is all approved and she would call Option Care, the infusion supplier, for me. Success!
Next I called Searchlight, the patient support group for Radicava – the new drug. Again after a long hold and with a pre-typed opening statement I talked with a customer service representative asking for my Patient ID Number and Case Number, and my status. I was transferred to my case manager. She had my benefit summary and she had already enrolled me in the copay support program. I should receive the benefit summary in the mail on Tuesday. Again success! So now I can make my own phone calls, and my husband will be less frustrated.
My allergy struggles and all my ALS struggles are so very minor compared to the hell created by the human beast in Las Vegas. Now if only we could turn the clock back to before that Sunday, bloody Sunday, night…..
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!