paul-tavano
Forum Replies Created
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1. Be patient with yourself and with others. Accept that it will take me longer to do things. Accept that people will ask me to repeat myself.
2. Don’t be afraid to ask for help when really needed. Don’t stop trying but if you can’t do it ask for help.
3. Don’t let your limitations prevent you from enjoying your family and friends. They will accept and love you unconditionally.
4. Stay positive and laugh often. Don’t be a Debbie downer and don’t allow others to bring you down.
5. Help other PALS whenever you have the opportunity. Share your experiences of what works and doesn’t work for you. Be open to new ideas.
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I couldn’t agree more with the suggestions to stay positive and to do as much as you can for as long as you can. Don’t pass up the opportunity to tell those you love that you love them. Don’t let the changes that you have gone through and are going through hold you back from participating. So what if your speech is off and you have to repeat yourself often, so what if it takes you longer to eat, so what if you need handicapped seating, so what if you accidentally drool, so what if you need to ask for help. The bottom line is we are all dealing with new realities every day and will need to adjust what and how we do things. Adjustment doesn’t mean stop doing things but to adapt to how to do things.
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For a rare disease it sure seems like it occurs more often then I would have thought. It may be that my radar is up for all things ALS but it just seems more common than I thought, which surprised me.
The second thing that surprised me was how many different ways PALS are affected. No two cases alike … surprise, which of course complicates finding treatments.
The last surprise was that I drew the slow progressing straw which has given me time to deal with the changes that I am experiencing. The initial 3-5 years of life expectancy has turned into 14 and counting. A very welcome surprise. -
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 be welcomed but I also think you need to be careful what you ask for. So I, for now anyway, I continue to approach preventative care as I did before I was diagnosed with ALS. -
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 and reach out whenever you need input from those fighting ALS just like you and your husband.
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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 of ALS like finger curls, loss of muscle between your thumb nd pointer finger, weakness in arms and or legs, muscle twitching and slurred speech. Most ALS patients have some number of these issues and along with ruling out other causes of yor symptoms ALS becomes the default.
Good luck and hopefully you have something else.
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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 progression is extremely slow. I still walk unassisted, eat normally (although more slowly) and drive myself. My speech is way off, I have lots of excess saliva and my arms/hands are weak. I wish I could share some secret but from what I can tell it’s random luck.
good luck and God bless. -
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
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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.
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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.
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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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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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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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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.
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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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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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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.
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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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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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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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Just got mine yesterday.
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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 that are harder to understand so in mid sentence I find myself looking for an alternative words which will be more readily understood.
There you have my 2 cents