ALS is a bum deal. Everyone wants to blame someone or something for it. It’s just luck of the draw.

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…

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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…

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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

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…

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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.

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…

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I do support science and the FDA. I trust they did due diligence.

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!

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… Read more

<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… Read more

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!

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.

Well said Len.

 

Just being there will help. No heavy conversations unless your friend starts the conversation. Let him express himself and be supportive.

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… Read more

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… Read more

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.

Thanks Jane. I suspect most people don’t have as good insurance coverage.
Good luck and wishing the best for you.

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… Read more

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?

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.

Thanks RZ. I’ll try it. The real problem is that I don’t like gin…,

I ordered some for my family. Soon friends were asking for them and then friends of friends. I’ve reordered three times so far.

I was diagnosed officially August 2022. (Unofficially in June on my birthday!!). Fist symptoms were slurred speech. Followed by cramping in my legs. That hurt. Gabbapenteen was prescribed but I didn’t like the side effects. I manage now by carful stretching and avoiding certain positions. I also take a drug to relax my prostate. I have no proof… Read more

If I don’t get cramps the pain isn’t bad. And I don’t get them often.

Loss clear speech surprised me and bugs me. Have to repeat myself every time. Gave up talking to strangers.

 

If I don’t get cramps the pain isn’t bad. And I don’t get them often.

Loss clear speech surprised me and bugs me. Have to repeat myself every time. Gave up talking to strangers.

 

Hi

this may not be the best place but I can’t find it anywhere

my speech is getting worse. Slow and sometimes slurred. Don’t like talking.

It was recommended that I have a card with me that states I have have ALS and it affects my speech. (In case I get pulled over by the police .

Does anyone know more or how have other people handled this issue?

There is a free app I use on my iPad called Notability. I can use my finger or a stylus to draw words.

Its simple to learn and use and very effective.

Joined A Phase 2a Study of TPN-101 in Patients with C9ORF72 .

Had to promise not to use any of the other drugs. Fair enough. They only promised a slight delay in symptoms.

maybe TPN-101 will turn out to no better but I feel like maybe I’m helping the science move forward.

Hey Jerry

you caught my eye with Nuedexta .

Are you saying you take it for Mucas? I can’t find much information.

i would love to know more

Folks paying 700 a month, 8,000 a month. 22,000 a year. A drug that costs 150,00 a year??? All this to delay the inevitable.

insurance companies making medical decisions.

imagine what the price would be if they had a cure

I don’t want to bankrupt the people I leave behind.

yes, I am frustrated

thank you

Not loss of appetite but has anyone else been having an issue with keeping food down?

a lot of times now after eating if I bend over I come close to losing it. Sometimes just turning. Even very small meals.

I’m fortunate that my wife and primary caregiver is not afraid of ruffling feathers. She can get things done. With my speech difficulties (coupled with a predisposition not to rock the boat) I can’t always advocate for myself. I am very grateful for her.

I live in New England. But my ALS is curtesy of my Italian heritage.

I forgot to say that I am so sorry to welcome you to the club.
I always fall back to Groucho Marx who said I wouldn’t want to be a member of any group that would have me as a member…

Amanda, you will be in my prayers

That pesky C9 is what my family passed on to me. The drugs are important to me, I would love nothing more than a cure. But as I got it, so I am passing it on. That makes me saddest. I truly hope that my children and grandchildren get a chance for a cure. That’s why I will fight. Donate. Push for more funding and research. Praise the efforts… Read more

I have a question. It seems now I am far more emotional than I ever was. I can’t believe it but movies and songs can now bring a tear to my eyes. I chock up talking to people and can’t finish my thoughts if it’s an emotional topic. It’s nothing to do with me or my situation most times. I don’t understand.

Has anyone else had this issue?… Read more

Diagnosed over this last summer. Started mostly as loss of clear speech. Muscle twitching became regular. Have seen atrophy in the hands. Right side weakness. But still functioning. I swim laps 3 times a week. Have dropped number of laps by a third. Try not to push it, too much and I can get pains in the muscles, but still love the water. Will… Read more

For some reason the response I posted to you was lost.

I try again. I was genetically tested with C9. When my brother was diagnosed they could only test for SOD 1. He was negative for that. My mom died in 2002 and I don’t think there was any genetic testing being done. At least none was discussed.
Good news though I have been accepted into a… Read more

My grandfather died of ALS 5 years before I was born. So I grew up with the knowledge. When my mom was diagnosed in 2000 it was reinforced. That was followed quickly by a sister in law and a then my brother. I couldn’t trip without the thought of ALS sneaking into a conner of my mind.
Then it was my turn. That news came on my birthday last… Read more

That was well said Katie. All I want to add is that I treat this as possibly my last Holiday season that I’m near fully functioning. I owe it to my loved ones to do what I can to make this season a fond memory. Happiest of Holidays to all.

Diagnosed only a few months ago. Bulbar. Voice is getting weaker. From a family of ALS, no one lasted more than a few years. I have no illusions about the future. Have a few advance directives. That said I will reserve the right to override myself if it want. Do not think I will but you never know. My faith sustains me. I feel the love and… Read more

Was just informed that I have been accepted to a screening for a Transposon Trial. If I pass the screening there will be 3 spinal taps over the next year. Never had one before. Seen them on Doctor shows. Not comfortable about it but I don’t want to spend my days sitting around waiting for the end. Besides if I make it sound like I had an awful… Read more

First winter. Central Massachusetts isn’t the worst place. Have hyper reflexes. So much to look forward to. Thank you all for the heads up. It’s not something I would have thought about.

Most of my muscles twitch. I feel them in the face, arms and legs. They don’t bother too much except when they turn to cramps. Those hurt.

Started adding foods high in potassium, magnesium and calcium. Added some supplements as well. These helped with the cramps and Charlie horses. Not completely gone but livable.

At this point… Read more

I do it for my children, nephews, nieces and grandchild.

With familial ALS, I have no thought that these trials will do much for me, but anything I can do to advance research that might help them, well that gives me peace of mind.