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Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
City
Fallbrook
Hi:
I was accepted in January, 2014, to the Undiagnosed Diseases Program at the National Institute of Health where I got a diagnosis. PLS. This was after 5 years of extensive testing on the outside. My greatest difficulty is walking. I fall less now because I use a rollator. I broke my clavicle last thanksgiving morning and that made me sweetly reasonable, as far a using an aid to help with walking. I am still in disbelief that a once very active, enthusiastic, energetic YOUNG 60 year old, who played tennis 4x a week and sprinted, and faced no challenge for highly physical activities has become an old woman, almost over night. Pls is so rare that odds are I would have a better chance at winning the lotto, almost.

I am still working. Sing with the locale chorale. Sing with an octet and quartet. Love
my husband, our home and all our pets. Have family that we spend time with, mostly
on holidays. When I can't put my pant legs on or I bang the rollator into my white door
moulding I get so darn mad and then I tell my husband "just think, these are my good days".

I am afraid of my future and what difficulties lie ahead. I wake each morning and that
fear is what gets me out of bed. I look at people walking and running. I am amazed
at the ease with which they can walk. How it is taken for granted. I go through bouts
of self pity and anger because I have no control over what happens to my body now.
I feel jipped.

So, I go to Yoga 2x weekly. Going to physio therapist tomorrow. Tai Chi on Fridays.
And I pray and go to church. I am not accepting this. I am remodeling the bathroom
and cleaning and sealing the laundry room grout. And I am going to start some small
art project. And re-panel a room divider with fabric I bought from a recent estate sale.
I am continuing with the projects I have always loved doing, with the exception of the physical activities. I get things done but at a snails pace.

I am always waiting for the other shoe to drop.

I spent years in AA and with the help of other sober alcoholics I was able to get sober
and have stayed that way for 32 years. I know the power of people helping people so
it is normal for me to join a Pls support group.
 
Hi Chris, I too am somewhat recently diagnosed. A bit new here myself but will still say welcome. I too have to use a rollator due to falls and continue to work.....it that's what you call what I do. Lol. Am wondering how long before I go to the powered chair with the balance issues becoming worse but am going to keep fighting it. In any event...welcome.
 
Thanks. We'll just take it, literally, one day at a time. And help someone feel better when we can.
That willtake our mind off our situation, or face it gallantly HAHA.
 
Sorry to hear about your diagnosis.

PLS is a rare disease about 50/yr in the US. The progression of PLS symptoms varies widely. Some people can still use a walker after 15 years and some people are confined to a power wheelchair (PWC) after a few years. I have Bulbar PLS which is a rare form of PLS. I was really hoping my progression would be slow. My speech was really affected after 2 years and I was in a PWC after 6 years. I was 51 when I had my first symptom. I was also very active and worked out 4-5 times a week. It is good to get your home ready the worst case scenario. I admit I did not do this.
 
Hi Chris,

Welcome to the forum.

Your post was striking to me, and I say this in the sense that -- in using just a few very ordinary examples -- you've captured perfectly what is the essence of living with PLS.

It is clear to me that you've come to the right place, Chris -- because your words ring true here.

Even if you didn't intend it to be, yours is a brilliant introduction!

Mike
 
Welcome Chris,
You sound like an amazing person, who has lived life to the fullest, even before your diagnosis, no regrets. Keep doing the projects that give you joy for as long as you can, and be safe while doing them. We are here for moral support and I have never seen a better group to feel that from. They understand the rants with out thinking you are about to give up on the world and well for some roll of a bridge. The humour here is great, with a lot of twisted minds, which I truly enjoy. Every person here had days of anger, and sadness, but it is usually short lived, and they do not wallow in it. Do you have family?

Paulette
 
>I am afraid of my future and what difficulties lie ahead.

Hi, Chris -- couldn't have said it better, but know you are not alone.


>We are here for moral support and I have never seen a better group to feel that from.

ditto that!


>The humour here is great, with a lot of twisted minds, which I truly enjoy.

:)

>Every person here had days of anger, and sadness, but it is usually short lived, and they do not wallow in it.

<Twisted humor on> let's hope not too short-lived <twisted humor off>
 
Welcome to the Forum, it is filled with great people, who are always ready to give their opinions which are generally very supportive, informative and (as Max said) with a bit humor, because it is too easy to get down in the dumps with this rare and ridiculous disease. We can all understand where you’re coming from; I think my wife is getting tired of hearing me say “I wish I had my old body back” Again Welcome.


Mike
 
Chris, welcome aboard. This sailing ship is often hard for others to understand... some days the rudder is up or it's missing, it has three masts but only one sail up and doing simple chores is like tacking into a head wind. From your post... you'll navigate well.
 
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