dbach

lastly...

If you met me - you would not know - unless I wobbled when walking. This sometimes happens - don't know why- unless I'm short on sleep. Other times, my legs are so stiff, they feel wooden - muscles so tight - I can't flex. Sometimes it goes away fast & sometimes not.

Sorry you asked? Will you please tell where you're at? What sent you to the dr's? Are you able to run? Is your breathing affected? Mine has been recently (I use an inhaler)
- could be due to my weight gain (I'm embarrassed). I ate as if I still ran... bad idea - went from size 8 to 12! OUCH! Sometimes I figure - may as well eat what I want - while I can. It's a stupid idea - and I must correct that.. tomorrow! Ha.

i have my f/u appt in Aug. I am curious as to what I will be told at that time...

Thankfully and like you, I am blessed with an amazing husband and a great family - who love me no matter what. And, my faith is helping me.

Eager to hear from you! (3 messages to fit with site rules)

Elaine

The biggest challenge is the tiredness.. nothing at all akin to tired after a long run. Just a super deep wave of fatigue which takes over.

I admit, I have not exercised at all in over 6 months. This was strange for me - and I put it down to aging (I'm 58) - but in retrospect, I now think that it was the start of this thing. I was lucky (If I can say that) that I was diagnosed very quickly - 2 weeks from visit to my GP. I read some people wait months. In fact, the day of my EMG was the day the neuro told us. ( by then - I thought it may be ALS... but didn't say that too loud, and only to my husband and my GP).

more

Hello Daryl,

Thanks for your message. WOW - Disney - you'll have an amazing time! I really like it there. We got back from our planned Italy cruise on June 2nd.

Symptoms - mine are not obvious- mostly on my left side. Left arm & hand have shrunk - muscle loss?. Fingers work (mostly) but often get into weird positions. I've intermittent pain across my palm and across soles of feet. The tics are constant - and all over the left side. They drive me bonkers - when I'm trying to sleep or read. These tics have recently migrated to right side - intermittently. Some days my left arm feels so heavy, I sling it over my purse for relief - guess this is not an attractive option for you. Last Sunday - I had such a cramp in my left calf - it was hard to walk - but it's better now. Today, my right leg is heavy when walking. I am frustrated by dropping things I pick up with my left hand. Today, the lemon pie I made was terribly heavy to get in and out of the oven. more...

Read my post for today under Stories of Hope. My thread is called the Power of Prayer.

Your wife is a wise woman. We all need to live for today. The best thing to do is to surround yourself with positive upbeat people as much as possible. Laughter is the cheapest and best medicine on the market. My dad said his specialist is very optimistic and said they have some new very promising drugs for ALS that be on the market soon. Have a great day and seize the moment and hug your wife. Kim

Hi! Hope your week is going a little better. You mentioned you didn't have the best day at work the other day. What do you do? I am a switchboard operator at our local hospital. I've been doing it for twenty-three years now. It has been extremely hot here lately. Thankful for airconditioning. lol Kim

Hello It takes time but you will find a "new" normal for yourself. You have to work through so many emotions. This forum has been wonderful for me to rant, ask questions or just visit! Welcome!

Hi! Welcome to the forum. My father was just recently diagnosed with ALS from to neurologist and is waiting confirmation of that diagnosis from a ALS specialist now. The people on here have been so supportive. They have eased my anxiety over my dad's condition more then once. Your wife might benefit from this site as well. Stay strong! We will be there for you. Kim

Hey.....I'm Judy, and I just wanted to welcome you to the Forum. There are many knowledgeable people here to answer your questions. Sorry you are having to come to the Forum, but welcome