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nikim1806

Member
Joined
Sep 19, 2010
Messages
10
Reason
PALS
Diagnosis
12/2010
Country
US
State
pa
City
State College
Last Feb I noticed the first signs (while lifting weights one day I could do 10 reps, next my left arm could only do 5) by June I saw a doctor because I was having some small trouble typing with my left hand, it's 10 months since the first sign and I can still type (though not 1/2 as quickly as I could) and my wrist has a decrease in strength. My doctor officially gave me the diagnosis yesterday so I'm now on his mailing list for any drug trials. and he has had me on rilutek (sp) since august.

so nearly a year and it's barely left my hand (and while it's slow and clumsy it's still usable)

i'm 37, single mother of a 20 year old and a "unique" 11 year old, both girls.

anyone else start this way? anyone have it stay only in one limb? My doctor said 5 years was realistic to hope for but 10 was less likely, which sucks but my more immediate fear is mobility, I mean 10 years is one thing if I can walk for 5 of it, it's another if I’m on a vent in 2

I am a planner, I would feel better about things if I could hear other stories so I can get some idea of the variables. I am ok having 50 contingency ideas.

How did it progress for others? Did you lose full mobility in one limb before it moved on? Do you lose full mobility or does it just get harder? How long did different steps take? I’d like to hear (well ‘like’ may not be the right word) your stories.

also i am scared, can't admit it to my family or friends yet but i wake up each night in a full blown panic, how am i going to do this.
 
Well I've been diagnosed 7 years. Still feed myself, hold a glass of wine type 1 fingered and use a power chair. There are people here with 10 to 19 years in. Don't despair. A good attitude will keep you going.

AL.
 
I was diagnosed on 4/29/10 of this year, and except for more trouble walking/bad balance/more pain in my back (the stairs in my victorian house are killing me!), I don't have any other symptoms: at least none that I can tell right now. Of course I'm still in denial that its a correct diagnosis, and am waiting for test results for the Western Blot for Lyme disease, and a blood test for Cushings Syndrome... both of which I'm praying that I have instead of this.

I am finally getting fitted for an AFO tomorrow, I've stalled on that since April, but definitely need something more than what I've been using. And going to the mall last week with a walker was a first for me, felt really weird! I'm 52, but look younger, so I get a lot of strange looks that I need to get used to I guess.

My 3 kids don't want to be seen with me with the cane, never mind a walker! :) I'm grateful that it started in my legs though, as I'm a graphic designer, and am on my computer all day. I have 3 kids, daughter just turned 17, and 2 sons, 13 and 10. First year I didn't take my youngest son trick or treating on Halloween, he went with a friend and his Mom thankfully. I just get very frustrated not being able to do things that I could do 6 months ago!
 
As Al said, it's not something that can be predicted or really planned for. Helen, I hope your problem is found not to be MND.

Nikim, I began with one leg in trouble, with what seemed like a very slow progression. A year from the very earliest symptoms I questioned the strength in my other leg, but there was no definitive loss. Six months later, the original leg barely worked. Rather, it shuffled--and the second leg was obviously in trouble. I was nearly carried to the office at Johns Hopkins (and should have already had a rollator walker). My experience having begun with earliest symptoms in late '04, diagnosed 7/07, wheelchair I believe in 5/08 but not all the time... is that you may easily have five years before you need a wheelchair, and perhaps quite a bit longer. Also, I was still able to stand at the stove and the sink until nearly 1/09. The ability to transfer from bed to chair to toilet continued even longer... November of '09. I don't know where yours will head next--as you know, there is no way to predict.

Also, I had cramping in my stomach muscles in July '07 when I was diagnosed. My armpits cramped. As you see, I still can type. I was also able to hook rugs until some time within the last six months, which requires some fine motor hand skill as well as larger motor skill.

Do not despair. I've been thinking a lot about the coping required with this disease, and while grieving is normal, as is fear, do not let yourself just fall into the panic, and then stay there. You will learn how to find help through this forum, your doctors and Clinic, the ALSA in your area (whom you should find by doing a search of your state/ALSA on line, and then contact). We will want to help any way possible. You aren't alone.
Sending you a hug~
Ann
 
I approach this post with mixed feelings. I don't want to scare you Nikim. Some people will have a slow or steady progression. My spouse has the rapid form. In Sept.09 we thought Danny had pulled a muscle( left calf muscle), he was limping pretty bad. After anti-inflamitories and physo he was on crutches by Jan. his leg couldn't support any weight. In March of 2010 he went off work on short term dissability while trying to get a diagnosis. In just over a year since first on set of symptoms, he is in a wheelchair 24/7. Both legs are gone( can't move them at all), his left arm he can only move with his shoulder( so extreemly limited movement less than 6"), and his left hand has lost most of the muscles. Gripping anything with his left hand is garenteed on wind up on the floor. The strength just isn't there anymore.

Keep your fingers crossed that you continue to progress slowly. I know how you feel about planning ahead for the worst, I'm the same way.
 
My progression seems very similar to the previous poster. Way too fast for my liking!

Ten months ago I was walking around Tokyo but then I developed foot drop in my left foot. Eight months later I was in a wheelchair. This disease is relentless. I never seem to have a day now when I feel better than the day before.

It is very painful for me to use a keyboard now. Fortunately a friend of mine installed a voice recognition NaturallySpeaking software on my computer so I just have to speak into a microphone and it prints out what I am saying otherwise I would not be able to write long texts like this one.

I can still stand on my feet but I need support all of the time. I cannot stand up from the wheelchair without help any more. I cannot go to the toilet on my own any more for a sh1t. My right hand can still work a computer mouse but is useless for trying to feed myself so now I have to use my left hand which is also weak now and fingers starting to stiffen up so it does not look pretty when I am eating as I chase food around a plate with a spoon and then have to get it to my mouth. When I do get to stand up my left leg is very difficult to straighten out. I feel that the throat problems are beginning. I often have to clear my throat half way through a sentence and when I am eating. I can still swallow okay and still have a good appetite. I do feel that my breathing is becoming laboured too. I am dreading being totally paralysed and feel it could be only one or two months away for me.
 
Hi,

my partner had a first symptom in Dec 2007, just some weakness in his left hand (fingers). He was diagnosed in Nov 2008, still only left hand/arm visibly affected.
2009 was a steady year for him with symptoms remaining in the left arm, but early in 2010 he started developing symptoms in his right arm, abdomen and legs.

Currently, he needs some assistance with dressing and cutting food. He walks with a stick, but has bought a scooter and is being referred for AFOs. I think that the loss of abdominal muscles has impacted more than weakness in legs and arms, resulting in poor balance. He is still working full time. His speech and swallowing (as per last clinic visit) are unaffected. Breathing is not visibly compromised but FVC is down from what it was last year, borderline of a 'normal' range.

I recall one of the first clinic visits and the neuro telling us that patients progress at a steady pace, that the pace does not increase or decrease. His argument was that if patients feel otherwise it is a subjective perception based on something like a major loss of function and suddenly not being able to do something (e.g. walk), perhaps followed by a more steady period (which is not steady at all as it is a build up for another 'big' loss). However, having observed my partner and having followed a number of patients on Patients Like Me, I no longer believe that the pace of ALS is always steady. I have seen patients who seem to have a steady progression over a number of years suddenly take a downward spiral (in terms of FRS scores) and die, as well as those whose FVC has gone down to 60 per cent in one year, only to remain at 60 per cent for the following four years.

Hope you have a slow progression.

Regards, Dani
 
From my reading here; it looks like it is different for each person...trying to get a timeline is important, I understand.

I see the Doc again for the first time since my diagnosis in a week and am hoping to understand my situation better...will let you know if anything seems helpful.
 
You hit the nail on the proverbial head... there IS no timeline. That's one reason why research is so frustratingly slow. There are no constants to measure. What you'll learn the more you are here is that it's largely trial and error and trial again for all of us, PALS and CALS alike.
 
Thank you all for your sharing. I didn't really expect a timeline or even steady progression but hearing a broad spectrum of experiences is actually comforting.
My panic is from lack of knowledge and all your stories have given me information, I know mine may progress differently than others but just hearing that A. I am not alone and B. there is life after loss of mobility are both good things and honestly have taken a load off my mind.
 
Hi, you sound so similar to me,
Im 40 and only have weakness and a dropped finger on my right. arm. Unfortunatly im right handed which makes writing and general tasks difficult.
So im hoping too that progression is slow and i can enjoy each day of my life and see my son grow up to, he's 14 and also unique. In my eyes anyhow.
Otherwise im perfectly fit and well. The Professor who diagnosed me ( 12/ 2010 ) has told me very light exercise only. As this will help too.
 
Hi driver :)
Yes slow is nice i think in this case and yes i was told not to push myself with exercise but I still go for 10 mile hikes because they make me happy and I can but i rest my arms more and don't strain them with anything.
 
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