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jenn

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Joined
Sep 5, 2007
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1
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Loved one DX
Country
US
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ri
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cranston
Hello,

I am new to this forum and found the postings very insightful. My mother was diagnosed with PLS in 2003. They say it's supposed to progress slowly, but in my mom's case, she was completely disabled in less than a year. She has not muscle control, cannot speak, write, has no use of arms or legs and he neck and breathing have recently been deteriorating. The doctors say that although her speed resembles that of ALS, since she does not have the muscle twitches, they still classify her as PLS. I have recently moved out of my parents home and my father and a home health aide are the primary caregivers. My father has not taken a day for himself in the last 5 years and I know he's so worn out. Any thoughts on how to help him see a support group? He's a very quiet person and even though my sister and I try to help out, he just does not enjoy himself when he does have a chance to be by himself. Also, my mom is wondering what new research studies are being done in this area? Does anyone know of any walks or other types of fundraising that is being done in either NY or RI this year?

Thank you and I look forward to future discussions.
 

CindyM

Moderator emeritus
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Sep 17, 2006
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3,543
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Learn about ALS
Country
US
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New England
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Anytown
Hi Jenn and welcome. I am glad you found us but sorry for the reason you have to be here. I assume you Mom is being followed by an ALS clinic and has regietered with your local MND chapter? We can help keep you up to date here but they will have lots of info, too. Perhaps one of their social workers can help Dad open up. Cindy
 

Angelus19m

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Nov 2, 2007
Messages
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Loved one DX
Country
US
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NC
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Fayetteville
Help!

HI, I dont mean to interrupt anyone`s chat, but my mother has recently been diagnosed as having PLS. Its been 9 mos since symptoms first onset with slurred speach. Im really scared b/c the doc initially said ALS and she had 4 mos to live on average. He did a nerve conduction study and showed no nerve degeration (that would be defianate to ALS) so he said it had to be PLS. He also said that it could take 3 yrs at min to determine if that was the diagnosis. I dont know if anyone has any other ideas but Im freaking out! The ONLY sign for 9 mos has been not able to speak (worsening) and small difficulties swallowing. Doc said ALS people typically last 12-14 mos. I know some web sites say 3-5 yrs as well for ALS. ANyone have anything more definate?

[email protected]
 

Stephanie

Member
Joined
Nov 4, 2007
Messages
25
Reason
Loved one DX
Country
US
State
Alabama
City
Daphne
Hi. My father just got told on Friday that they think he has PLS. He's had diffuculties walking for 3-4 years now...and after tons of tests and several back surgeries, they are now saying PLS. We're shocked, and scared, so I know how you're feeling right now. I'm here if you want to chat. Right now my father is depressed, has been for years not knowing what was wrong...but now learning it's only going to get worse..he's a mess. I want him to get rid of the "I give up" mentality that he has and fight this. I need him to fight this...my family needs him to fight this. I don't want to push too soon...b/c I know it's all still new to him. I want to be as proactive about this as I can be, fundraisers and whatever else I can do to help in finding the cure for this.
 

CindyM

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Learn about ALS
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New England
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Hi Angelous and Stephanie- welcome to the forum although I am sorry to hear about both of your parents. MND affects people differently so the best the docs can do is give you an average "ball park" of what to expect. There are folks around here who have had it for 10 years or longer, so don't give up. We like to say around here that nobody is guaranteed a long life - any one of us could get hit by a truck this very day while stepping off the curb. :(

We find it helps to plan for the worst, hope for the best, and make the most of each moment you have together. Cindy
 

Angelus19m

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Nov 2, 2007
Messages
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Loved one DX
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US
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NC
City
Fayetteville
Frustration

Hey Cindy and Stephanie,

I guess the not knowing part is what is killing me. Im lucky mom doesnt have the im giving up attitude. We lost my father 7 mos ago from Cancer so we are all trying to really be strong. At first the doc said ALS with about 4 mos to go. When we came back a week later they did the nerve study and showed only the lower nerves. The upper ones were "perfect" according to the doc. He was shocked because he though he saw twitching on the tounge which was the first thing affected. Im hoping the test proves to stay right and it doesnt become ALS. Sounds like in your case and from all I have read that PLS is not fatal and majority of people have some difficultis walking etc and generally after about 3 years it is a solid diagnosis. The thing that scares me more thany anything is mom is only 9-10 mos from symptoms. One one end I`m glad its ONLY her vocal and some swallowing problems (she can still eats hamburgers ect). Im just scared from everything I read from all different sites online. I honestly see that noone really knows the extent, or effect each person will be affected. One thing I do see the same is the time line of diagnosis of about 3 years to be sure for PLS.
 

Jon J

Member
Joined
Feb 23, 2007
Messages
16
Reason
DX UMND/PLS
Country
US
State
CA
City
Fallbrook
There is no medication, no treatment, no cure

I was diagnosed with PLS over 15 years ago. My slide to helplessness has been slow but steady and cumulative. It seems to have picked up the pace since last July. Last July I visited Dr. Floeter at NIH in Bethesda MD for 5 days. I made the trip from San Diego and back alone and now my condition has worsened that I could not make that trip again today, or on any tomorrow.
No more the tough guy making jokes about my disabilities with Harley Davidson stickers on my scooter. I have had enough. I won't continue to go where this PLS is taking me.
My neurologist has done all he can, there is no point in further contact. I have been paying the $35 visit co-pay to receive a dose of sympathy.
I've had enough.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Jon. I can relate some days. I spent about $ 50 this week for gas and parking at the Clinic to be rushed by the doc to tell me what he could have done on the phone. I wasn't impressed. I will still continue to joke about this because it is a good coping mechanism. I know it sucks but tomorrow can be a better day.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
To Jenny

When youve been Married to someone for Many years when they get sick ,you do .
That spouse is part of you . My wife does a real good job of hiding her feelings to keep my spirits up ,shes there when i need help and put my hand out ,ive had PLS for 8 yrs. now . we have moved to a simpler home where someone cuts my grass and other maintenance .My wife gets the garbage out, bless her ,im still able to do alot on my own
All you should do for her is let her know your there when she asks for help .But DO NOT TREAT HER LIKE AN INVALID and hover over her .I can read people like that and i hate it ,it makes me feel like im worthless Encourage her to stay as active as she can Flowers ,puzzles ,going places .You might want to look into a Speech Writer or device that will make speech
 

Jon J

Member
Joined
Feb 23, 2007
Messages
16
Reason
DX UMND/PLS
Country
US
State
CA
City
Fallbrook
That is not true - with PLS tomorrow cannot be a better day. It may be no worse but it won't be better.

Al, I know you have been a kind and knowledgable member of this forum, of great help to many of its members with advice or when "just talking" helps. I read the forum but seldom write.
I am looking to act today to make certain that tomorrow never comes.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I think I understand what you are saying. Please call someone. Call me 519-940-8357. Things may not be as bad as you think. Maybe we can get you more help. I have no idea of who you are or what pain you are going through but it is not human nature to just give up. Please don't. Call someone.
AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
jon j

hello jonj. i have had this illness 9yrs next month,i was only 31yrs old when it started.
i had a job i loved,full active social life, extremly fit and healthy going to the gym 3 times a week then my life turned into a living hell. i now have widespread spasms that are now effecting my jaw/face muscles,limb girdle muscle weakness,hypotonia and mild speech problems. my progression had been bad the first 2yrs, slowed down then 1yr ago rapidly progressed again. there have been times that i too have felt i can't go on but i am a fighter. i was telling my friend delb i am like a durasell battery bunny,i just keep going and so does he. delb has bulbar onset als but it has deteriorated alot recently,he has a terrible home life with a abusive wife and adult protection are now involved but he is determined to fight his als. there are so many people like delb,al,cutika,tim and lorie who have it a 100x worse than me and i am thankfull i am still here and can do the basic things in life. quality of life is down to your outlook and thinking, i am not for one minute implying it is easy but i can either be miserable in pain or happy it wont change anything. life is so precious and should'nt be wasted.i do totally understand how you feel and you can pm me anytime if you need to talk, but please don't give up and let us support you anyway we can.
god bless
caroline.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
fund raising for pls.

jenn and stephanie
if you are intrested in this the spastic paraplegia foundation arranges fun walks and other things for hsp/pls. you can contact mark weber or lk gentner via spf or pls friends for more info. they also have conferences/get togethers in various places for people to meet other fellow hsp/pls 'ers.
if you are intrested i could ask them if i can pm there email address to you.
take care
caroline
 

Jon J

Member
Joined
Feb 23, 2007
Messages
16
Reason
DX UMND/PLS
Country
US
State
CA
City
Fallbrook
GrampaAl It is now Dec. 2009. I am still around. Are you? I am in the middle of a major spasm right now. Haven't slept since midnight last.
I have Mirapex, Carbidopa/Levo, Clonazepam, B12 injectable & Magnesium. Nothing stops a spasm. Nothing starts one. They last 6 hours or more. I just twist and moan. My tours (4) to NIH as a volunteer are over. I have gotten much worse and now and can not travel to NIH or even to Zurich.
I have read the recent inputs to this forum and it just goes on and on.
I search it for a drug that will STOP or PREVENT the spasms or just knock me out. Nothing! My Primary Care Doctor acts like an auto repair insurance adjuster - checks the damage and tells me what shop to go to. Doesn't matter, I can't get there or they can't fix it.
Drinking vodka right now. I often do this- It helps in the sense that I enter a state between been the guy in spasm and being the drunk guy in spasm. This forum would serve its members better if it had more solutions and less stiff upper lip tough-it-out advice and happy talk.
If I find sure way out, like easy to get Pentobarbatol or equal I would share the info.
 
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