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gewitham

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Merry Christmas from a newly diagnosed ALS patient. I am unaware of the rules (if any) of my postings except not to be bad?

I want to wish everyone the BEST XMAS ever! I know that since I was diagnosed at Lahey Clinic in Burlington, MA last Friday, I have had a life assessing reappraisal.

I would appreciate ANY & ALL INFO & penpals!

I went to Lahey for a diagnosis for unspecified problems ex. weakness & balance. I had the workup and then had my Doctor tell me that he had bad news. You have ALS and will be dead within 2 years!

If anyone can help me, I would appreciate it!

Gary
 

Al

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Hey Gary, they told me 2-5 years five years ago, I'm still here. There are people here with ALS 17 years. The docs deal in generalities. Here we deal with life. Welcome.

AL.
 

Icanmanz

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Gary, so sorry for your diagnosed. The nerve of that doctor, to break the bad news to you like that! May God bless you, I will be praying for you. I lost a son to Als on June 3, 2007. It changed me, but when God is in control there is not anything we can do. Again, God bless you, and have a blessed Xmas.

Irma
 

gewitham

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Thank You!

Al & Icanmanz,

Thanks for your replies and the thoughts!

I look forward to corresponding with you all!

Gary
 

abbas child

Very helpful member
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Gary, I'm also sorry for your diagnosis, and believe the doctor was out of line... only God knows how long any of us has. An evaluation of life is always a good thing, though. I can attest to God's provision in all areas, most importantly, His peace which is undeniable. If you don't know Him, please ask Him to reveal Himself to you so you may know that He IS and loves you. He doesn't ignore an honest inquiry. You will be in my prayers.

With His love,
Ann
 

gewitham

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Thank You for your thoughts in this time of Christmas!

Gary
 

BethU

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Gary ... the first couple weeks after diagnosed are the roughest ... you put it very well, a "life assessing reappraisal." ALS seems to change everything at first, but then you find out that it doesn't. Once you get over the shock, you find that it becomes a question of managing symptoms, and learning to do some physical things differently. Forget the **** about two years. That's baloney. We have ALS patients on this forum with 15- and 17-year survivals, and they are doing a lot more than "surviving." They're living very full lives.

Let us know how we can help.
 

gewitham

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Joined
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PALS
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12/2008
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Thanking you, my friend!

I was devastated but I then recovered due to a phone call the next morning from my Neurologist in Maine. He was upset at the "crudeness" of my Doctor's revelation of my condition so he called to reassure me. I met with the Neurologist two days ago and he was vague about my longevity & mobility condition. I asked about "assisted suicide" if I became BAD but he said "NO"!

I asked about planning for wheelchairs, disabled bathrooms & house & mobility problems....but got no answers.

I am really confused.

Thanks again for your reply,
Gary
 

BethU

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Gary ... have you contacted ALSA (ALS Assc.) ? They are a vaulable resource. They will come to you and evaluate what might need to do to modify your home, as well as giving you enormously helpful information about support groups and resources. They will be a constant guide and and usually have free loaner equipment.

I'm really sorry this is happening at this time of year. I promise, next Cristmas will be better.

Take care.
 

CindyM

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Beth is right, Gary. Next Christmas will be better. I am glad you decided to join us, though. Folks around here are very helpful and knowledgeable. Almost no topic is off limits, except when somebody tries to sell a "cure" that does not yet exist. So ask away, or better yet, read some of the older threads and use the search feature. There is a lot of information around here. Again, welcome. Cindy
 

gewitham

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PALS
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12/2008
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US
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City
Rockport
Thank You!

I am taking Rilutek and finds it makes me groggy. Does it also cause constipation or is that from ALS?

Gary
 

CindyM

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Some PALS (People living with ALS) find that they have to amend their diet if their muscles get too weak for BM's. I think there are a couple of threads on this topic in the archives. Try searching for bowels movements.

Or it could be the medication. Anyone have advice for Gary?
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
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Gary, can't answer your Rilutek question, but want to recommend the mda.org, --Muscular Distrophy Assoc., which has a wonderful ALS section of the agency. They have loan closets, a really good caregiver guide and just lots of helps. I'm not in an urban area, yet they'll bring down whatever they have that I may need. The ALS information for coping with our various problems seem pretty well covered there.

Also, I don't know how much you want to learn right away--personally I needed to learn as I was able to deal with how tough this can be--my husband, however, got onto the internet and looked up everything he could find. My point is--look up Rilutek for possible side effects, both in this forum and perhaps, by a search engine.

All the best,
Ann
 

abbas child

Very helpful member
Joined
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Messages
2,159
Reason
PALS
Diagnosis
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Country
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Sorry to repeat... I just re-read your post, Gary. The ALSA or MDA will be full of information about equipment and accessiblility, even where in your area you can perhaps find what you need. They and the( MDA) books have lots of ideas for your future needs, bathroom safety as well as any possible changes needed in that room or others... They cover the logistics pretty well--my own neurologist isn't helpful at all. He basically directed me to a pulmonary doctor for lung testing, proposed physical therapy, but didn't follow through. My family practice doctor is going to write letters of medical necessity for me. I downloaded Advance Directive forms to fill out from the internet--they're free, but also available at hospitals. Basically, I just wanted to make sure those end decisions were ones I wanted and to not leave my husband with difficult choices.
Ann
 

MarianneS

Active member
Joined
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Messages
64
Reason
PALS
Diagnosis
06/2008
Country
US
State
ma
City
lexington
Hello Gary,

Merry Christmas a day late! I'm so very sorry about your diagnosis. I was diagnosed at Lahey in June and can't imagine who would have been so stark in their assessment of you. If you are ever back done this way for the clinic they have there maybe we can meet. My next appointment is in Feb.

Marianne
 
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