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confused

New member
Joined
Apr 18, 2006
Messages
3
Reason
PALS
Country
CA
State
Quebec
Hi,

It's been a heck of a year. We are a family of 9, 5 boys, 4 girls. Age range from 46 to 63. Two brothers. after 2 years of hell have been diagnosed with Parkinson's plus. Any other families out there dealing with this. Doctor says it is most likely hereditary and that normally that means 1 in 4 will get it. Rest of us are concerned in between trying to take care of both of them. Their first symtoms started at age 52 and 57. Now one is in long term care (bedridden) barely eating due to nausea and the other is very stubborn and still living with a friend - just had the driver's licence revoked - thank god! One started with arms and legs, the other with just the voice (sounds drunk) and both getting worse andworse.

Nobody can say what we are to expect in terms of life expectency, meds are making them nauseous - weight loss is extreme.

For the one still at home, any recommendations to help communication - very hard to understand.

Any recommendations for the one at home to make life easier when it comes to eating, brushing teeth, dressing etc....

Does Parkinson's plus mean Parkinson's and ALS combined? Where do we go for support? Parkinson Ass. or ALS Ass? Which would give most accurate info on meds and expectations?

Any experience whether men are more likely to get this than women or is it even in families?

Any words of advice, any anedotes, any related experience would be so conforting right now. Good or bad news we are devastated and at this point just looking for answers from regular people.

Thanks for your time.:cry:
 

BWk

Distinguished member
Joined
Jun 6, 2006
Messages
113
Reason
PALS
Country
grant
State
new mexico
Hi, I tried typing in parkinson's assoc. and got some info there , try that site. I don't know if they have a forum there or not, but looks like some useful info there.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Hi confused. Sorry you have to be here but glad you found us. If you look in the link People with ALS at the top is a sticky with the title. Activities of Daily Living Manual. It might give you some ideas on the questions you asked. Are you in Canada? The ALS Society here has a Manual for People Living with ALS that might be helpful as well. It can also be downloaded from the site free ut is over 100 pages long so is a big printing job. Hope this helps. AL.
 

sharonm25

Member
Joined
Sep 14, 2006
Messages
11
Reason
PALS
Country
US
State
Florida
RE: Parkinsons Plus

I found this to be very interesting because my mother who is 73 is diagnosed with ALS but she had a sister who was diagnosed with Parkinsons and many of their symptoms are remarkedly similar. We have often wondered if my aunt might have been misdiagnosed. She is now deceased. I have never heard of Parkinsons Plus and was wondering if you ever found out if if you can have both at the same time?

Sharon
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
I can't honestly say I've read anything about Parkinson's plus.
 
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