Martin Welsh M.D.

[BarryG]

bythesea, I know that you dont have an hidden agenda, you are just going through the same things as the rest of us (just as the doctor in the article is). We all have our own beliefs on the issues of feeding and breathing assistance and I am not trying or wanting to force mine on anyone but I would like to say that you should make up your own mind and not be influenced by the decisions that others (the doctor or me or anyone else here) have made.

I am not pissed off but it does bother me when people say "Oh, I am never going to go there or get that" because I have been there. When the PEG tube was first suggested to me I said "No Way" but since I got mine last February I have had a good life that I would not have had otherwise. Joel says the same about his trache and vent.

You are right, there are no easy answers but the decisions are yours to make for you. Don't let anyone decide for you.

Beth is right when she says we are here to support and not to judge each other. Thanks for posting the link.

Barry

 

[tdamess]

a lot of people change their minds when the time comes, from what they had believe all their life how they would want it to be...

 

[mare]

No previous knowledge, but perhaps would be pertinent to this discussion.

Previews on our TV station for an upcoming show- "Three Rivers" (CBS listing in my area)
Starring Mandy Potinka (SP?) as an ALS patient, who it seems chooses to go off vent,
Shows some discussions between drs. with opposing views.

I have never seen this series; just thought is might be of interest to some.
It will air this Sunday night, CBS network, at 9pm EST. Check local listings.

 

[bythesea]

How more pertinent can something be. Thanks for the info. I'm going to set the DVR right now.

May we alll be forever young

 

[tdamess]

just put it in record in case i forget... on previous post the reason i know this is because of my mom's stroke she never wanted to be depended on anyone and in talking with her doctor at a rehab he told me i've been here a lot of year's and all these patients in here have all felt that way .. and they struggle to survive in here.. and my mother lived 8 yrs after the 2nd stroke a year later.. all 8 yr's she never even got to sit up again just layed in bed so sad....but she wanted to live

 

[Zaphoon]

bythesea,

If I have it right, you do not have ALS but have been a caregiver to people who suffer similarly. Thank you for serving those who cannot serve themselves.

Other than that, I am forcing my fingers not to type things I may later regret.

Kim

 

[bythesea]

You're right about me having been a caretaker. Thank you for the compliment.

I have had another disabling neurological condition called Cervical Dystonia since 2002

However I have been symtomatic for ALS since March 2009 and have run the gamut of tests (except for the spinal thing).

Lately I am having trouble moving my legs and this seems to be noticeably worse almost every day. Although I don't have a diagnosis yet, if it walks like a duck...well you know what I mean

To all the regular contributors, thanks for your committment I read the forum several times every day.

Your warmth, humor, and wealth of accumulated knowledge help many people seeking advice amd emotional support with this God-forsaken disorder

 

[strikeout]

The name of the Three Rivers episode airing Sunday night is "The Luckiest Man". Sounds very interesting. Seems Mandy Patinkin's character is in a car crash and because of his ALS diagnoses he does not want any life-saving measures. Also nothing wrong with a little ALS exposure.

 

[Zaphoon]

I loved Mandy's acting in, "The Princess Bride". Great movie!

Zaphoon

 

[halfin]

I hear they are going to put in a subtle reference to that movie, in the TV show. Mandy's new lines:

Hello. My name is Inigo Montoya.
I have ALS.
I am prepared to die.

 

[Zaphoon]

I'll be laughing my butt off if I hear that line, Hal.

 

[lydia]

Just had to laugh-we quote The Princess Bride all the time here-:-D

 

[tdamess]

did not like the end of the show as i could never let my loved one who is not that bad yet go into that operating room never to talk to him again it would be over my dead body.and would an als patient be allowed to be an organ donner in the first place where as they dont really know what causes als ..

 

[mare]

It was more about transplants than ALS. Did not deal with ALS realistically. (but, hey, it's TV)

I agree with you, tdamess. Very controversial. And, I don't know if that is ethical or legal!

 

[bythesea]

Definitely made for tv.

Could a late middle-aged man give viable organs to people so young?

I thught it did touch upon (lightly) the complicated side of personal relationships between a caretaker/relative and their sick relative.

I never was as close to my mom as when she had alzheimers in the last seven years of her life.

My brother passed away several years ago after complications from his paraplegia (bed sores). His last years were miserable but he was indomitably independent for more than twenty-five years.

However he was such a fighter, never knew when to take advice or accept help.

For those last years he was always in crisis mode, hospital to nursing home to ER, over and over., a more realistic scenario than the smiley Mandy portrayed.