[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 also improved a lot. My last FVC was 100%. I am in the Healy Platform, Pidopidine, so that me be impacting as well. Who knows? I think bipaps should become the standard of care for anyone suffering sleep problems.

Tom

[Tom Hehir]

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

[Tom Hehir]

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 regular check-ups was very positive.

Tom Hehir

[Tom Hehir]

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

[Tom Hehir]

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 months, nothing has progressed and some symptoms have decreased a bit particularly my breathing after I got my bipap. I am in the Healy Platform trial. For me good food, an exercise routine I do daily, deep spirituality (praying) and great support from my partner, family and friends have made a big difference. I try to enjoy every day I have.

[Tom Hehir]

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 amplification  system that helps. I do not have serious swallowing or drooling issues. Most importantly, last November my FVC was 50. I was having major breathing issues and I could not sleep for more than an hour at a time. My NP got me a bipap ventilator which I use when I sleep and for a couple hours each afternoon. My FVC gradually improved to 90. This has made a world of difference in how I feel and my other symptoms. If you don’t have access to a bipap, you should.  Also, it’s important to recognize that we are all unique and we need clearly communicate our needs to our providers.

Tom

[Tom Hehir]

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

[Tom Hehir]

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 gone quickly. My worse symptom  was shortness of breath which also impacted my sleep. The lack of sleep made my other symptoms worse. In November my vital capacity was at 50. My nurse prescribed a bipap and a cough assist to remove mucous. Within a couple of months I began to feel better and my vital capacity improved to 70 which enabled me to qualify for the Healy Platform Trials. Most importantly, I began to realize there was much I could do to live with my ALS. I sold my condo, a fifth floor walk-up, and moved in an accessible apartment. I banked my voice and bought magnet button shirts. I have a regular workout developed by my neuro PT.

I try to enjoy every day visiting with family and friends, breaking bread. (By the way, my last vital capacity score was 90. )

[Tom Hehir]

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 minimal problems. I think all ALS patients should be prescribed a bipap when diagnosed to simply give your lung muscles a rest. Also the cough assist expands my lungs and clearing out the mucous improves my speech. This should become a standard of care.

Thanks again John.

Tom

[Tom Hehir]

What time and how do we register?

 

[Tom Hehir]

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. So far, I’m doing OK. I highly recommend participation.

[Tom Hehir]

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 of panic when a neurologist told me I might have a year. There was so much do and so little time. However, I got to an ALS clinic and the neurologist assured me that there is great variability between PALS. More importantly, I was surrounded by people who knew how to improve the quality of life for PALS. I have banked my voice, have an effective exercise routine, and use a bipap at night. I am in the Healy Platform Trial. My symptoms have stabilized. Who knows how I will “progress”.

For me, quality of life is defined by being able to connect with family and friends. I am blessed with a wonderful family, a devoted partner, and great friends.

[Tom Hehir]

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 the hospital since March. He got his vaccine two weeks ago.  Really!

Tom

[Tom Hehir]

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

 

[Tom Hehir]

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 initial reaction could be private following up with a phone call to reassure them that I was doing OK and that I had good support and medical care. I  let them know that they could tell others as I was “out” about my condition. I also let people know what they could do to support me; cook meals, help me move to an accessible apartment, pray. My partner has been wonderful but he too needs support and I tell my friends that. Since my diagnosis in September, though my symptoms began over a year ago, I have moved, began to use an amplification system for my speech, started an effective PT program, and gained 4 pounds enjoying all fattening food I avoided for years.

I have yet to come out on Facebook as that seems a little too public for my taste. I also want to avoid seeming like I am some type of heroic disabled person. Yes, I am disabled but hardly heroic. This is a terrible disease that should not be minimized. However, as I learned during the AIDS epidemic in the 80s, it’s important that we all learn how to live with our diagnosis.

[Tom Hehir]

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

[Tom Hehir]

Richard,

So well said.

Thank you,

Tom

[Tom Hehir]

Dagma,

Your writing has meant so much to me.

Thank you,

Tom

[Tom Hehir]

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

[Tom Hehir]

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 and arms, I feel much better.

Tom