Tom Hehir

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 has…[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 of…[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 6…[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 an…[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 have…[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 to…[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 ALS.…[Read more]