Paul Tavano

There is no definitive test yet for ALS. There may be for other MNDs but I am only familiar with ALS. Have they done an EMG? This is pretty standard for ALS and is used as an indicator but not a definite that you have ALS. ALS is currently diagnosed when all tests have been run and all other causes have been eliminated. There are other indicators…[Read more]

The best advice I was given when I asked how long do I have and what to expect was typically people last 2-5 years but everyone is different. You normally progress at a somewhat constant rate. So whatever you see happening over the next several months is typically the rate you will see ongoing. I was diagnosed in 2009 and I am an outlier as my…[Read more]

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 act…[Read more]

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 abl…[Read more]

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…[Read more]

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.

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.

🤞🙏🏻🙏🏻🤞

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.

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…[Read more]

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.

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.

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…[Read more]

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.

We bought an battery operated  jar opener that has worked very well. Not really a hack but it does solve a Problem.

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.

Just got mine yesterday.

I am having speech difficulties and as a result I am constantly asked to repeat myself. It is frustrating but I do understand. I find myself not talking as much especially with people I don’t know very well. I’m not antisocial but my speech is starting to make me an introvert even though I really have a lot to say.
there are certain sounds tha…[Read more]