Old 01-28-2015, 10:16 PM #1 (permalink)
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Default My first brush with ALS

I'm scared of the 'what's next' - tried to locate a local discussion and therapy group for ALS; nothing found. Have read the visible posts in 'Newly diagnosed' thread and I fit like a glove. Have to keep my wife sane through all of this. I was told it might be ALS when I had an EMG done in October...then was hospitalized at the end of last month and two more EMGs later the doctors have determined I am significantly weaker and confirmed their diagnosis. Am guessing I should opt in for the Riz drug? Thanks in advance
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Old 01-28-2015, 11:10 PM #2 (permalink)
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Default Re: My first brush with ALS

Welcome to Heartbreak Hotel, Herb.

Are you a veteran? If so, read the stickies and go to VA asap.

I have been on Riluzole a year, and some say it helps slow the decline.
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Old 01-28-2015, 11:40 PM #3 (permalink)
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Default Re: My first brush with ALS

Welcome Herb. I am so sorry to see you here, but rest assured that this is a great place to be. You will find some pretty wonderful people here willing to provide amazing support and information.

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Old 01-29-2015, 06:42 AM #4 (permalink)
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Default Re: My first brush with ALS

I'm sorry to have to welcome you to our family, Herb. This diagnosis starts you on a roller coaster ride of emotions that never seems to end, but you are not alone now that you have found us. You might try to get your wife to join us also--this forum has been an enormous help to me. The nearest support group is almost two hours away, so I was extremely grateful when I found this crazy, wonderful group of people.

Are you being treated at an ALS clinic, or by a general neuro? If a general neuro, you need to get to the nearest real ALS clinic. This is not a disease that you want treated by people who don't specialize. Some people travel hours to get to a clinc--it might even be an overnight road trip, but once you get "settled in" you don't have to go every three months if you chose not to. Also, contact the ALSA as soon as possible--they offer great support, and you will need it. Ditto what Graybeard said about being a veteran. If you are not, then the ALSA may be vital to you.

This disease progresses differently for everyone, but please don't delay in getting things in order. My thought has been that the sooner we get equipment in place, the sooner I can stop pushing and enjoy the time we have. Many PALS resist because the equpment makes things more real, but if you can tolerate it, get it and store it--that should help your wife.

Again, welcome. Read, ask questions, vent--there's always someone here.

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Old 01-29-2015, 07:49 AM #5 (permalink)
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Default Re: My first brush with ALS

Welcome and very sorry for your diagnosis. Good advice above. Do not hesitate to ask questions. Please give riluzole a try. The sooner you start the better. The conventional wisdom is that it prolongs life by 2-3 months. My neuro says by 10 percent which if you are slow progressor could be significant.
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Old 01-29-2015, 07:56 AM #6 (permalink)
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Default Re: My first brush with ALS

Herb, sorry to welcome you. Please encourage your wife to come here as well- it is truly the only place where people fully understand the challenges you both are facing. The advice is invaluable- even more so than from the doctors, because the people here are living it and have worked out many of the pitfalls through trial and error. And you will find humor, courageous spirits galore to help inspire you and help keep you sane. Donna
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Old 01-30-2015, 06:10 AM #7 (permalink)
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Default Re: My first brush with ALS

Thanks...not a veteran though. I am being treated by regular neuros..will seek a clinic in New England. Thanks for the support!
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Old 01-30-2015, 06:47 AM #8 (permalink)
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Default Re: My first brush with ALS

Definitely go to an ALS clinic. It is a bit of a hike but I think you should go to Mass General since you within driving distance.
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Old 02-08-2015, 01:58 PM #9 (permalink)
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Default Re: My first brush with ALS

herb --

remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.
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Old 02-08-2015, 03:08 PM #10 (permalink)
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Default Re: My first brush with ALS

Your local Als association should have some support groups. Sometimes you can attend by phone. I would call them and ask or go on their website.
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Old 02-17-2015, 06:58 PM #11 (permalink)
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Default Re: My first brush with ALS

Herb, I too was diagnosed in January, and so can relate to what you and your wife are going through. It is an extremely difficult time of adjustment and coming to grips with something very terrifying. My progression was rapid until I started taking riluzole/rilutek. It has slowed down considerably, I've noticed, so I'm hoping this medication is helping. My thoughts and prayers are with you.
- Charlene
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Old 02-20-2015, 08:35 AM #12 (permalink)
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Default Re: My first brush with ALS

The team at the Mass General is one of the best around. Hope that's not too far. The first months for me were crazy too. There was something bothering me and I couldn't figure out what it was so I went to a psychologist. What it was was lack of independence in personal hygiene and so I promptly bought an aftermarket bidet which is been a godsend. The ALS Association social worker was helpful and certainly this forum.I had to Higher an advocate to get my disability, But it was well worth it. Good luck to both of you. I bought long-term care insurance years ago and it's paying for an aide to be with me all the hours my husband is not. Try and stay ahead of the disease. And feel free to ask us anything. One of us is been through it. Try and take it one day at a time and is Max has been known to say it is what it is.
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Old 02-20-2015, 02:53 PM #13 (permalink)
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Default Re: My first brush with ALS

You should definitely consider taking Riluzole if you can tolerate it.

If you do a search you'll find numerous discussions on it.
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