Alan Larrivee
Forum Replies Created
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I have never felt like a number at the clinic I go. I dare say maybe it’s the best ALS clinic in the States. It’s Metropolitan General Hospital in Boston. Most of team are the same folks at the Andrew Healy ALS clinic. I feel like everyone there from the top down the parking lot people treat me like a friend. The care is impeccable. They do in fact treat ALS although they do other diseases. I see a full team at each appointment,PT, OT, respiratory, speech, and neurology. If I have questions an email is answered quickly.
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I will not have a tracheostomy. I am a retired old guy, so I know that affects my choices. Although my caregiver and wife is not retired, I don’t think in good conscience I would want to saddle her with the round the clock care demanded. ALS has been a part our family for generations. I have come to peace with it.
We have medical directives in place. Once I convinced my doctor that I was not insane he helped me get them posted in the system. I also have copies that are to travel with me if I need to go to the hospital. You have to be vigilant. My brother had such a directive that doctors chose to ignore when they put him on a ventilator, his wife and my other brother fought with the hospital to remove it as the patient requested.
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1 Be honest with others and especially yourself about your condition
2 allow others to be helpful in the ways they feel comfortable
3 keep a sense of humor
4 seek spiritual guidance and peace
5 celebrate each day you have with friends and loved ones
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My dysphasia has me doing the same. Mashed potatoes with plenty of gravy. It may be food centric but I am with family and friends. I hope you enjoy your holidays, I plan on making them as joyous as possible.
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I do support science and the FDA. I trust they did due diligence.
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The link you provided was very compelling. But the FDA said there’s no evidence of effectiveness. I’m confused. Boy would I love to slow this train wreck down!
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Diagnosed June 21,2022. My birthday! It was simple. Same symptoms as my mom and brother. A simple genetic test confirmed.
As for letting people know, I’m very selective. Friends and family. Honestly no one wants to hear about my problems. Most have their own problems. I do explain why they don’t understand me when I speak. Most are sympathetic (one mocked me), but I don’t want sympathy. Just want to feel normal for a moment. -
<p style=”text-align: left;”>Not sure what to say. My doctor thought I would benefit from Nuedexta. Yeah it’s been pretty good but. Just got a letter from my pharmacy that my insurance will no longer cover that drug and after December 31, I’m welcome to pay for it myself. They said this move will save money.
Profits before health. Yes, I am frustrated.</p> -
Sounds great Amanda
what are your initial impressions? Do find any benefits?
I believe RNA therapy is the best news in a while. Once they figure it out for on mutation the others will be easier.
Good luck to you and all my best wishes!
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Len, found the song on Spotify. Very nice. Also try the song that I’m saving as part of a playlist for my wife when…. Warren Zevon, Keep Me in Your Heart.
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Well said Len.
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Just being there will help. No heavy conversations unless your friend starts the conversation. Let him express himself and be supportive.
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One year ago when I was diagnosed I was slurring my speech mostly towards the end of the day. I was encouraged to see a Speech and Language therapist and am lucky enough to have a University in my home town that has a department for that. They started me right away with Voice Banking. They referred me to the fine clinic at Boston Children Hospital. They set me up with Acapela group and now I have a voice that really sounds close to what I used to sound like. As now I can’t speak without talking slowly and quietly and it is very difficult to understand me, I am so grateful for the SLPs in my life.
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Have my first ALS/Cold. It does seem amplified. Aches and pains and weakness seem more intense. Can’t cough up anything. I think I will be wearing masks when ever I go out in the public in the future. Not fun.
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I’m in the Mass General C9 ALS/FTD Transposon Trial at the Healy ALS center. I couldn’t be happier. The study staff are so amazing that I look forward to seeing them (even for lumbar puncture). Next week I will be informed if I have been on the real drug or the placebo. Starting then if I was on the placebo, I get switched to the real McCoy.
Not sure how I feel. If I on the placebo then I can say “thank God now I will get some benefit. If I’m on the real drug now, guess I will say, imagine how much more I would have declined if I was on the placebo.
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I am in a drug trial for the next 6 months so I can not take Relyvrio. Was excited when it first was being talked about. Was not so amused when they announced the price.
I’m curious to know if anyone will share after insurance what is the out of pocket cost for this drug?
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Good question hope someone can answer. In the meantime you can donate your brain and spine for research. That’s what I did and they say I can keep them until I’m done with them.
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Thanks RZ. I’ll try it. The real problem is that I don’t like gin…,
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I ordered some for my family. Soon friends were asking for them and then friends of friends. I’ve reordered three times so far.
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ALS is a bum deal. Everyone wants to blame someone or something for it. It’s just luck of the draw.
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The street value of what you received was a little more than a half million dollars. Once again US drug companies want their profits. At roughly 200,000 dollars a year. Who can afford it? Even the most generous insurance company will probably only pay 80%. Even that will cost the family 40,000 dollars a year. With that and other expenses replayed to this disease , what family would be solvent? Who says we need a compassionate health care system we have the money can buy!
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A year ago I started noticing that I was slurring some words at the end of the day. Got in touch with the fine folks at Boston Children and they set me up banking messages and sent them to Accapella. Today I can barely be understood when I speak. No training on this earth would have saved my voice. But I do have a way to communicate and make my self understood. My synthetic voice does sound like I used to. My wife children and grandkid along with my friends appreciate the voice. I have some special messages in the bank only to be played when I’m not around anymore.
I can recommend voice banking with out reservation. I have no regrets about doing it myself. I am greatful for all the folks that helped me.
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Dagmar I’m sorry that you haven’t had the experience that I have had with SLPs. My first experience was being encouraged to develop strategies on how to help myself be better understood. That SLP taught me “breath stacking”. This is one I use a lot.
Another helps me with breathing. She set me with an Aspire (The EMST150 Calibrated Expiratory Muscle Strength Trainer) and an adapter to exercise inspiratory muscles. She also gave exercises using a drinking straw. Humming and reciting with your lips around a straw isn’t easy but helps some.
Another who set me up with Acapela has not been pushing it. It’s there for when it becomes necessary. One gave me a voice amplifier for when I’m really soft.
I do have to face facts that my bulbar ALS is aggressive and all the breath training won’t stop the inevitable conclusion.
I am happy that I have had so many intelligent and caring SLPs during my journey.
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Thanks Jane. I suspect most people don’t have as good insurance coverage.
Good luck and wishing the best for you.