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Paul Tavano replied to the topic Preventative Care After Being Diagnosed With ALS in the forum Living With ALS 2 months, 3 weeks ago
I think whether or not you continue with preventative care is influenced by what stage of ALS you are in. My progression is slow so I continue with my preventative care but I can see a time as my ability to manage on my own would impact the way I approach preventative care.
I have often thought about dying from something else other than ALS would…[Read more] -
Paul Tavano replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 8 months, 3 weeks ago
I take Glycopyrrolate which helps some. I would try all of the above to see which works best and is easy to use without unintentional side effects.
As for a cure …. we are all hopeful. Currently there are some treatments that may help slow the disease. Slowing it down gives more time for additional treatments and someday a cure.Keep positive a…[Read more]
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Paul Tavano replied to the topic Can anyone give advice in the forum Diagnosis Information and General Questions 1 year ago
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]
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Paul Tavano replied to the topic Disease Progression in the forum Living With ALS 1 year, 1 month ago
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]
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Paul Tavano replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 4 months ago
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]
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Paul Tavano replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 5 months ago
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]
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Paul Tavano replied to the topic Factors that influence your thoughts and feelings in the forum Living With ALS 1 year, 7 months ago
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]
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Paul Tavano replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 1 year, 8 months ago
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.
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Paul Tavano replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years ago
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.
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Paul Tavano replied to the topic New study shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria in the forum Research Topics 2 years ago
🤞🙏🏻🙏🏻🤞
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Paul Tavano replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 2 years, 1 month ago
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.
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Paul Tavano replied to the topic Living Longer with ALS in the forum Living With ALS 2 years, 3 months ago
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]
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Paul Tavano replied to the topic Have you had (or plan to have) a shingles shot? in the forum Living With ALS 2 years, 3 months ago
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.
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Paul Tavano replied to the topic Use of Off label treatments. in the forum Research Topics 2 years, 5 months ago
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.
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Paul Tavano replied to the topic Communication in the forum A Forum for ALS Caregivers 2 years, 5 months ago
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]
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Paul Tavano replied to the topic ALS Clinics — Why Do You or Why Don't You Participate? in the forum Living With ALS 2 years, 6 months ago
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.
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Paul Tavano replied to the topic Helpful hacks and tips for living with weak hands in the forum Living With ALS 2 years, 6 months ago
We bought an battery operated jar opener that has worked very well. Not really a hack but it does solve a Problem.
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Paul Tavano replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 6 months ago
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.
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Kathryn F. Kennedy and
Paul Tavano are now friends 2 years, 8 months ago
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Paul Tavano replied to the topic Have you had (or plan to have) a shingles shot? in the forum Living With ALS 3 years ago
Just got mine yesterday.
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