Hi Dagmar

When I was first diagnosed I had a terrible time sleeping, I used three pillows and still would wake up every hour. I was seriously sleep deprived. My FVC hit 50 so my NP ordered me a bipap. This really worked for me. I now wake up twice or three times during my 10 hour sleep to go to the bathroom. I am a male over 70. My breathing… Read more

Hi Eric and Sandra,

I just finished my Pridopidine trail and have moved to open label extension. I  have not experienced side effects. I found the visits to be helpful in that I could discuss my ALS with the various team members. I also like the thought that I am participating in a community effort.

Tom

Carolyn, Thanks for your update. My biggest concern is that, if I remain stable in six months as this is all my open label allows, will I be allowed to continue on the drug? It seems the FDA takes a long time to approve drugs and time is something we don’t have.

Tom

Hi All,

I’ve just completed Healy Platform, pridopidine. I’ve gone on open label extension.  My ALS isn’t progressing much and in one area, breathing, has improved. Though I don’t know if I was on active drug or placebo, I think I may have been getting the drug. Now I’m getting the active drug. I highly recommend the platform. The experience… Read more

Hi Lisa,

My FVC was at 50. I had much difficulty sleeping. I got a bipap and eventually my FVC went to 90+. I still use it every night as I think it gives my diaphragm a rest and sometimes for an hour or so during the day when I nap. As I now get good sleep, my other symptoms are stabilized.

Tom

As I approach my one year anniversary diagnosis after over a year of symptoms, I agree with Dagmar’s and others approach here. I have broad symptoms, speech, breathing, hand weakness, and overall balance issues when walking. For each of these, I have accommodations so I can still handle most of my life activities independently. In the last… Read more

Hi,

My first symptom was failing grip strength which I thought was due to age. However, I did have a couple of respiratory incidents that ultimately led to my diagnosis last September. I also developed some speech issues in April of 2020 that my doctor said was due to “post nasal drip”. My speech has been about the same for 15 months. I have… Read more

Hi Marianne,

I think every PALS should be offered a bipap and cough assist at diagnosis. It just makes sense that we should try to preserve our breathing muscles as much as possible. Thanks for your response. I think attitude does matter.

Tom

Hi All,

I was diagnosed last August after a year of symptoms (breathing, grip strength, and speech). The first neurologist told me I might “have a year”. I freaked out. Fortunately he referred me to an ALS clinic. The neurologist there told me that ALS progression is highly variable and that he has had patients for ten years though others… Read more

Thanks John for sharing. I was diagnosed last Sept. By November my SVC was 51 and I was prescribed a bipap. I use it at night and a couple of hours in the afternoon. Shortly thereafter I was given a cough assist. My SVC is now in the 70s and my FVC is 100. I can lay flat without a problem. I went from having considerable breathing problems… Read more

What time and how do we register?

 

I’m enrolled in the Healy platform trial with predopidine. I entered for the same reasons as Curtis. I’m in week 10 and have had no side effects. A side benefit is the meetings with the research team, a terrific group of people. They conduct various measures of muscle strength, FVC etc. This gives more data to determine the “progress” of my… Read more

Richard,

So well said.

Thank you,

Tom

Dagma,

Your writing has meant so much to me.

Thank you,

Tom

Hi Marianne and Richard,

Thanks for your responses. I have always been a physically active person, swimming, skiing, hiking, and biking. I miss this terribly.  However, I do not have a choice with my ALS. The choice I do have is to live life as best I can. Spending more time with loved ones is a gift.

Tom

For me quality is not defined by whether you need a wheel chair or breathing assistance. I have worked in the disability  field for most of my life and maybe that helped. I have friends who have used wheel chairs or communication devices their entire life. They have had full lives.

When I was diagnosed last August, I went through a period… Read more

Hi Folks,

I live in Mass. and have ALS. I am 70 years old and cannot get vaccinated. I have contacted MGH, my primary care provider, and the state Dept of Public Health. It seems that ALS is not a priority here. By the way, I have a friend who works in billing in a hospital who is a healthy 30 year old. He works remotely and has not been in… Read more

I’d like to respond to those with sleep issues. I too had them. I couldn’t sleep more than an hour at a time. I was exhausted all the time. I got a bi-pap when my vital capacity went into the 50s. After getting the bi-pap I got great sleep, felt much stronger and my vital capacity went up to the 70s. Though I still have weakness in my legs… Read more

I definitely plan to get it as soon as possible and hope my partner can as well.

 

Hi All,

Most people I know and my family knew a good deal about ALS. Some had done the ice bucket challenge and others are medical professionals. The thing that was difficult for me was how difficult the diagnosis was for them. Some broke down as I told them, making it difficult for me. I started emailing and texting people so their… Read more