A little disheartening....

[mbmurray]

Was officially diagnosed in Jan 2013, symptoms going back 1.5+ years. Even after giving the diagnosis, I had a FRS score of 48, and I was in relatively good shape, right arm and shoulder only area really affected... I pretty much expected the diagnosis (Took 4+ months to get there), but there was that small inkling in the back of my mind that maybe they were wrong and I really don't have ALS.

Fast forward to today, celebrated my sons 7th birthday, I got him a basketball hoop, put it together (slightly difficult), took him out to shoot hoops, with me being right handed, couldn't shoot with that hand, left hand no problem, but not the same

Then grilled out hamburger and hot dogs, couldn't raise the gas grill top all the way with right arm, had to use left arm. Reality is hitting me that the disease is slowly taking its toll on me, guess the only bright side is I appear to have slow progression, take what I can get with this bastard...

 

[Nikki J]

I am sorry. These losses are hard. You have every right to grieve. But do try to live each day to the max. And slow progression is good. I really believe better treat ments are coming and I have hope for a cu re
Hugs
Nikki

 

[Nighthawk]

mbmurray,

I am sorry to read that.
I know this darn disease must be difficult for you as it is for me. I've also been losing abilities as the time goes by. However, on the bright side, I try to live each day the best I can with whatever I have still left functional in my body and the support of my always beloved family.
As Nikki wrote, there are more promising therapies on the verge of approval than there were let's say 5 years ago, just hang in there the best you can. I believe there will be light beyond the tunnel for all of us.


NH

 

[jpsteeler99]

I hear ya, it was 1 year ago this month that I said to myself, "something is wrong". I was perfectly healthy with just a slight gait disorder. 1 month later my neuro hit me with the diagnosis, another month later my 2nd opionion confirmed it. In July I moved to a new house and did most of the heavy lifting. Packed up the U-haul twice. A year later it takes me a half hour to walk a city block, and that is if I don't trip or lose balance and go crashing down. I am retired and on Social Security in less than a year at the age of 45. I'm thankful that my arms still work and I can breathe and swallow with no difficulty(knock on wood).

 

[ltbeauti]

mbmurray, sorry to hear about your diagnosed. glad you found the forums though. i hate this stupid disease too. just when i adapt and accept a change.., something else changes. it sucks.
hang in there and concentrate on the things that you can do