Just Diagnosed Today 6/17/14

[Music67]

Went to the VA muscular-neurologist yesterday. He was just about to offer me 3 months of Ivig when he checked my upper left arm and noticed upper motor neuron disorder along with the existing lower motor neuron so he said the Ivig won't work with me after all. He did state this fighting back a tear. I'm not sure what Virginia Mason is going to do now since they already stated that they were willing to try an Ivig. I'm sure the 2 hospitals share info. He also said I fit in the "flailing arm" category which does have a little longer survival rate. The doc checked the strength in my right arm and said he thought it was a little weak. My fiance reminded him that I'm left-handed so that was never my dominant (til now!) arm anyway. He said that I would notice it when I tried to hold hand weight out in front of me which I did the first thing this morning. I couldn't quite hold my 15 lb. weight in front of me but the 10 lb. weight was easy to hold directly out so I'm not sure if he got that one right or not. I haven't noticed any loss there.
Getting fitted for an ankle support today at a prosthesis store today. VA is picking up the tab. Other than that I'm hanging in there, feeling okay & I'm daily praying for healing for all you (And me!)!

 

[Atsugi]

Getting fitted for an ankle support today at a prosthesis store today. VA is picking up the tab. Other than that I'm hanging in there, feeling okay & I'm daily praying for healing for all you (And me!)!

Thanks for the update. Glad it's a positive day.

 

[nebrhahe53]

Mike:

I read the thread of all you went through with your wife at the end. I could only wish my care at the end would be as loving, kind and thouough. You have an amazing family.

 

[MaxEidswick]

>I read the thread of all you went through with your wife at the end. I could only wish my care at the end would be as loving, kind and thouough. You have an amazing family.

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Ditto that!

 

[Music67]

I'm finding this hard to believe . . . I called up a friend yesterday to tell him about my "flailing arm" classification of ALS with all my weakness on my left side and he responded that his 80 yr-old brother-in-law has lived with the same diagnosis for 50 (!) years, only on his right side! He said he got it when he was 30 and continued working as a house painter for about 20 yrs. Today he said he is still up and around and that he was going to call him today to tell him about me and would get back to me tomorrow. Should be interesting. Kinda gives me some hope for tomorrow. . .

 

[MaxEidswick]

>Kinda gives me some hope for tomorrow. . .

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[jillinak]

Other than that I'm hanging in there, feeling okay & I'm daily praying for healing for all you (And me!)!

A positive attitude is the best weapon we have. thank you for prayers and know I'm praying as well.

 

[MaxEidswick]

>I live in Anchorage, AK with my husband. I have 2 adult children and 6 grandchildren all in AK. I have two cats and a dog

needs pics of pup and kitty ...


.

 

[BlueEyesOhio7]

Max, your pups are SO cute. How many have you?

 

[MaxEidswick]

just the four now: Beanie/Boots and Reny/Maize the lhmd's and irish ...

.

 

[BlueEyesOhio7]

Adorable!

 

[MaxEidswick]

>Adorable!

 

[BlueEyesOhio7]

Here's another pic of my boy

 

[MaxEidswick]

nice shot!

 

[Tx Daddy's Girl]

Sorry about you diagnosis. My father was 62 when he was diagnosed and lived 13 months. It was horrible to watch the man I thought was invincible break but the time I had with him was amazing. We cried a lot but we laughed a lot too. My advice is get your affairs in order and live. Spend all the time you have with the ones you love.