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Stauffer

New member
Joined
Mar 15, 2008
Messages
3
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
MN
City
Sleepy Eye
Good Evening Everyone ~

My father-in-law was diagnosed with PLS in October 2007. It has been a hard battle
for him to accept his diagnoses. I have done some searching and I have found no PLS support groups....I would like to request any updates on those of you who have this and could give some advice and support that I can forward on to him...they are not computer savy so I am the mediator between you and him. Any help would be greatly appreciated! Also, I'm new to this "thread" and "blog" stuff...so any edicate I should know would be helpful! This has been especially stressful for my mom-in-law....

Thank you!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Stauffer. Welcome but sorry you had to come looking for us. Have you contacted ALSA or MDA in your area? They may be aware of PLS Support groups. We have a few here with it but not a lot. Hope we can help.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hi Stauffer If he decides to go to a Support Group i would only tell him one important thing . Be prepared to see things that may upset him . I was not prepared to see what i saw . I saw for one a lovely lady My age who could not hold her head up ,drooled so much her husband had wipe her mouth every few minutes . I saw people who could not hold their bowels or Urine .Keep in mind ,they know whats going on ,but have no control . I also encountered a husband who spoke for his wife and introduced himself as Joes Butt wiping service as his wife cant do that herself . I wanted to get up and Smack him so bad for embarrassing his nice wife . We got in the Car and i couldnt help but get tears in my eyes . These Nice people get to lose their dignity not to mention their ability to care for theirself . Only a few words of warning be Prepared to encounter some things that may shock you . Geo
 

Stauffer

New member
Joined
Mar 15, 2008
Messages
3
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
MN
City
Sleepy Eye
Thanks Geo for the information! I appreciate the feedback!
 

Stauffer

New member
Joined
Mar 15, 2008
Messages
3
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
MN
City
Sleepy Eye
Thanks Al! I will look into those organizations.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi. Geo. I was going to say I can't believe that. On second thought though I guess I can. It takes all kinds. I personally have never seen behavior like that thank God. Worst I've seen is some drooling and emotional lability. Lucky? I guess.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Yah They put the ALS and PLS patients in the same meeting as MDA was sponsoring it . They met once a month . You introduce yourself and tell something about yourself . Of course some have no speech so their caregiver would do that . There were 8-12 people 3-4 PLSers the rest ALSers .Being that i was i Limbo yet (no Diagnoses) I could see myself being like them eventually . I think more people should see this ,that would encourage more to give but i have to say you better be strong . I fortunately live in a 55 + community now where the Biggest percentage of us have some health issues .This makes you appreciate what you have and you dont feel all alone . We also appreciate eachother and dont make slurred remarks about another ones health issues . God Bless Geo
 
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