New member looking for similar PALS

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simkim

New member
Joined
Jan 20, 2006
Messages
4
Hi,
Just happened upon your forum searching for some information. I was diagnosed in Feb 05, at 35 years old and live in Melbourne, Australia.

Involvement is just in hands and arms and progression seems fairly slow at this stage.

Am on Rilutek, as well as a selection of supplements, including recently starting a series of Glutathione IV. I do Pilates once a week and am wondering if anyone else out there has tried the glutathione, if so any benefit?

Is anyone else at roughly the same stage as me, or had similar onset?

Thanks for reading
Kimberley
 

Suzanna

Member
Joined
Dec 24, 2005
Messages
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Hi Kim, Sorry you are here but welcome, I'm new myself and I've found some of the info. helpful and the support great. I felt I was going crazy until I read others were suffering with the same maladies, phys. and emoutional.
I live in Canada I just turned 38, I am a single mom with 1 daughter. I was DX in August 05. It really sucks this desease, I cannot sugarcoat it and say otherwise. I too am on the Rilutek. Have faith and don't give up.
Suzanna
 
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Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi there,

My husband als also started in his hand. It slowly progressed for the first 4 years. I think that it is common for it to move more slowly when it starts in the hands. You will find that the weakness will progress however. You will have to learn to modify as the time goes on. We sure learned a million different ways to do things. And I agree, this diesase sucks. Your right, there is no way to sugarcoat it. However, you can live and learn to make the best of it. We did. Good luck, and if you have any questions, please feel free to ask.

Carol
 

leslhart

Member
Joined
Jul 28, 2005
Messages
21
Hi Kim,
I was diagnosed at 34, I just turned 40. It started with my right thumb. I have been on Rilutek since the begining. My progression is slow but constant and some what unpredictable. Starting in my right hand, you'd think my right arm would be useless by now, but thats not the case. Although weak, my arm still works. I can still pick up a kitchen chair. I can walk, but I can't talk. I guess my point is, don't try to predict this disease. Every New Years I try to picture how I'll be next New Years, and I'm never as bad as I predicted. Take it day by day and make the adjustments as you go. I was a single parent raising a daughter who is now 17. I got married 4 years ago. Even though I have this disease, I'm still a dad and a husband and that keeps me strong.
Les
 
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Suzanna

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Dec 24, 2005
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Re:

Thanks Les, that helped me as well. I lost my voice too, and started with hand esp, thumb weakness, today they gave me a walker :( but i've just started falling and staggering, but i still wear heels............lol. Yesterday at the ALS clinic they said i'm doing well' what does that mean?
Will the staggering and falling get worse, as you noted we just don't know. Thanks for your input it was helpful and inspiring to me.
Suzanna
 
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leslhart

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Suzanna,
I think when they say "you're doing well" they mean the progression is slow and you're adapting. They always tell me I'm doing well and I ask them "compared to what" He said a lot of ALS patients just aren't up to the mental challenge of it all. So if you need a walker...use it, if you need a computer to speak for you..get it. I hobble around like a penguin, and use my power chair to walk my dog. Doesn't seem to bother the dog much, so what the hell. Mental toughness is key, and at times, its impossible to muster, but if you make it a habit, it becomes easier. It helps to get the "snap out of it" speech from the wife when I need it. Ithink its especially tough when you lose your speech. I would trade anything to have my speech back. But its not going to happen, so I just crank up the volume on my laptop so everyone can hear me. Hang in there.
Les
 

simkim

New member
Joined
Jan 20, 2006
Messages
4
Hi to all replies,
I haven't had a chance to get back to this forum for a few weeks, but was really bouyed by your responses.

I agree that it is a mental game we play, and keeping on top of things mentally is the key.

It is great to hear of other PALS who are a similar age to myself diagnosed and still about 5 years or so after. I have two little boys, 4 1/2 years and 19 months old, so I am desperate to hang on as long as I can and as well as I can to enjoy them and do my best for them.

The great thing about this forum is that everybody looks and sounds the same in their typed messages, despite the fact that we are all different ages and stages of the disease.

The one thing I do appreciate about this disease is that it doesn't affect your mind, and that comes through loud and clear in all of your bright and articulate posts.

Thanks
Kimberley
 

Suzanna

Member
Joined
Dec 24, 2005
Messages
16
Re:

Thank you Kim for your last statement, and it is very true. i only wish that those without ALS knew that...........
Best Wishes,
Suzanna
Dx, aug.05
38
 
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staceycrawf

New member
Joined
Mar 1, 2006
Messages
2
hi kimberly,

my name is stacey i live in brisbane. i was diagnosed in oct o4. started in bulbar area. i have 2 daughters 31/2 and 19 months. i cant do much for myself anymore. everyday life is getting hard. especially with raising two little girlsat the same time. my husband quit his business but we still have to send them to care 4 daysa week. how is your husband handling the sad news. my husband has always been agreat support for me but solely caring for me and the girls is really taking its toll now. we will just keep taking it day by day. i was olso wondering if you could tell me what the iv meds are and what they do. if i can helpp or offer any advice please e-mail me. take care.... thinking of you and your family...
 
J

Jeannie

Guest
CIARA1 said:
Have any of yall thought about the stem cell program in china at all? i read about some people recovering some is that a lie does anyone know?
Hi Ciara1, welcome to the forum, ummm china treatment, Nobody has actually recovered from als.

Id like to say hi & welcome to all the other new members, I'm glad the forum has changed because I dont know about anyone else, but the old forum took ages to load and sometimes never loaded, thus why i haven't been here.

Best wishes Jeannie xxx
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
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Diagnosis
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Country
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Hello to all the new members and old ones back from other places. David has put in a faster program and you should not have any of the delays that we had in the old forum. Out of the bad comes some good. Take care everyone.
Al.
 

Al

Moderator emeritus
Joined
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Messages
7,960
Reason
PALS
Diagnosis
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Country
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State
On
City
NW of Toronto
Sorry Kim I lost sight of your question about atem cells There is a Colorado Firefighter that had it. Go to this website and click on Jeff and Cyrilla's page and see as far as I know the only true and factual account of an experience in China.
http://www.castlerockfirefighters.org/
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
You may have to cut and paste the url or just copy it to get it to work.
Al
 
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