Forum Replies Created
October 7, 2021 at 2:41 pm #20679
I’m usually not allowed to participate in drug trials because of my time since first onset but I am involved in a number if studies.
1. Everything ALS speech study where I record my speech weekly
2. Purdue University’s breathing study where I use an EMST breathing device
3. Mass General Hospital swallowing study
4. Mass General Hospital activity study where I wear watch type device to monitor my movement
5. ALSTDI where I record my voice and take the ALSFRS survey monthly
August 19, 2021 at 4:07 pm #20293
Since I’ve had ALS for 12 years I’m usually not eligible for drug studies. I am involved with the following research efforts:
ALSTDI precision medicine program
Everything ALS speech study
NHI rare disease COVID-19 study
Mass Hospital NQ keyboard study
Purdue University breathing and speech study
ALS Community research study
I may not be able to get involved in drug trials but I have found a way to contribute.
June 15, 2021 at 2:45 pm #19539
I am lucky in a way because my progression is slow. I have more time to adapt to my ever increasing limitations. For me it has always been important to stay in the present. I am ashamed to admit that I used to not want to be around PALS with advanced ALS because it was a glimpse into my future. By focusing on the now I eliminate the anxiety about what lies ahead and can fully enjoy what I can do today. I can also fully embrace PALS no matter their stage and recognize the strength they have as they fight their battle against ALS.
June 10, 2021 at 3:20 pm #19475
I have a very slow progression of ALS. First diagnoses in 2009 and have lost very little function. I take riluzole along with vitamin B12, C, D3, E, beta carotene, folic acid, magnesium and melatonin. Most of the vitamins were recommended to me from An ALS research doctor. Not sure if any of it helps but doesn’t hurt.
January 28, 2021 at 2:30 pm #17584
We redesigned our bathroom to create a roll in shower and toilet. In addition we designed a sink that looks normal but the cabinets can be removed to allow for wheelchair accessibility. I don’t need the modifications yet but are prepared when we do. We will add the beset when needed. I agree that you should plan for the worst and hope for the best.
January 28, 2021 at 2:22 pm #17581
December 15, 2020 at 3:05 pm #17186
I absolutely plan to get the vaccine. Time is not on our side when it comes to those of us with ALS. I want the opportunity to travel freely, gather with family and friends and do normal day to day things without the fear of Covid. I’m not sure where ALS will fall in the ranking of who will get the vaccine when but I will get it as soon as I’m eligible.
November 6, 2020 at 3:17 pm #16739
It has been over 11 years since my diagnosis. Hearing the words you have ALS and a 2-5 year prognosis with no real treatment was a shock to say the least. At first I shied away from letting people know I had ALS because as long as I could hide it I would. I also didn’t want to participate in ALS groups because I didn’t want to see what was in store for me in the future. When I did tell friends and family there reaction was how can we help. From their desire to help and our desire to fight this disease we created a nonprofit “We Will CURE ALS”. The purpose is to raise funds for ALS research. Our primary fundraiser is a charity golf tournament and we have donated over $800,000 towards ALS research.
The nonprofit has allowed us to feel like we fighting the disease and gave a way for those that wanted to help to help. We have met so many ALS families who have lost loved ones and who are still committed to find a way to help others. Our event has gone beyond just raising funds it has also raised spirits.
I agree that staying positive, staying active, eating right, laughing often and not dwelling on the future are all very important. I would add that fighting by getting involved with support groups, fundraisers, webinars, research studies is so important. It’s easy to feel sorry for our predicament but you can feel so much better by doing something, anything to help make a difference.
October 21, 2020 at 2:59 pm #16617
Yes I got my second shot about 2 months ago. I had a little bit of a fever the day after but otherwise not an issue.
August 31, 2020 at 9:38 am #16208
Find a doctor familiar with treating ALS. They tend to understand the desperation of patients and caregivers. They also stay up to date on trials so will be more familiar with the drugs involved and more open to helping. At least that has been my experience here in TX.
August 13, 2020 at 4:40 pm #16120
So many great replies and let me add mine. With ALS there are so many unknowns when it comes to how the disease will effect each individual. The reality of how awful this disease is does take time to process as so many have said before me. I also want you to know that not everyone takes the 2 – 5 year progression path. There are many of us who progress much more slowly. Don’t give up hope for a slower progression and be patient as I am sure your husband will be ready to deal with whatever the hard decisions when necessary. I wish you and your husband all the best.
July 14, 2020 at 3:12 pm #15857
I would only add that you don’t have to go every 3 months. It could be 6 or more if you don’t feel a need to see the clinical team. I was going yearly and now I go every 6months. The team tends to see more fast progressing patients so then need guidance if you are not in that category. Dammar is right on as usual with her guidance.
July 14, 2020 at 2:59 pm #15853
We bought an battery operated jar opener that has worked very well. Not really a hack but it does solve a Problem.
July 14, 2020 at 2:53 pm #15851
I’ve been taking the 2x dosage for 10 years and have never experienced a problem. There is a new dissolving version that may be worth a try to see if that makes a difference. I think with the dissolving one you don’t have the same food restrictions before and after so that could make a difference. Good luck.
January 24, 2020 at 10:02 am #14342
Just got mine yesterday.