ALS diagnosis from Dr. Appel last week ...

[MaxEidswick]

could be worse, I suppose, but not sure how:-?

 

[ottawa girl]

Hello Max,

Sorry for your diagnosis. Like you, I always say to myself "it could be worse". That's kept me going... Oh that and " one day at the time".

I imagine you and your loved ones are in " shock fog" - it will wane. Things have a way of settling down and getting back to normal. A different normal but OK none the less. As you navigate your new reality, please take full advantage of all this site has to offer. There's lots! For myself, I started researching here just in little tiny bites.

Would urge you to watch the three part series on YouTube " The ABC's of ALS". My entire family and many friends viewed this informative and well presented series - it's one of the best I've seen. The details of our illness are introduced in a very sensitive manner.

We're all in this together Max.

 

[MaxEidswick]

-- thanks, OG! I figure the diagnosis is wrong anyway. In golf we say 'there are two kinds of luck', of course we also say trees are 90% air

 

[mich5]

Welcome, max! Glad you found your way to us. Like ottawagirl, I looked things up on this site in small bites. You've just been hit with a lot, take some time to digest it. Ask us anything on your mind or just vent if you like. I've found a lot of dear friends from this site. One day at a time - we all have plenty of good days (and so will you .

 

[WellsRuby]

I hate that you are here on this forum but you will gain a lot of knowledge and support from here. It has been a life support for me. We use the same doctor and great staff at the clinic.

 

[Txgirl]

Hi Max- Another Texan I see. Sorry for your diagnosis. It hits you like a ton of bricks at first. Then the denial phase. It took a couple of months for it to sink in and get over the shock. Everyone on this forum told me it gets better with time and they were right. It has gotten better and I have a new normal.
I guess you kind of adapt. I never thought I would but I have and you will too.

 

[MaxEidswick]

>Welcome, max! Glad you found your way to us

thank you M5 ...

>take some time to digest it

will do. The process is different than I imagined. I guess D'Nile is not just a river in Egypt. .

BTW, Ann Arbor class of '78. This is our year. we are a house divided -- Sandy was/is Michigan State ...

 

[MaxEidswick]

>We use the same doctor and great staff at the clinic.

Thanks, WR -- yes, we are fortunate to have a group like Dr. Appel's -- he seems like a straight-shooter which I need.

 

[MaxEidswick]

Hi, Txgirl --

> Another Texan I see

yup. a Colorado transplant from last August. Last summer was a bit of a trial ... stroke June 4th, house burned down in High Park fire June 22, lost job at HP on June 30th, and had dog stolen in July. :-(. The HP offered me a dream job in July if I would move to HOU, so here we are on our Great Texas Adventure.

>It hits you like a ton of bricks at first. Then the denial phase. It took a couple of months for it to sink in and get over the shock.

This seems to be an accurate description of where I am at. D'Nile.

>Everyone on this forum told me it gets better with time and they were right. It has gotten better and I have a new normal.

Definitely not there yet -- still getting used to typing with one hand ;-(.

>I guess you kind of adapt. I never thought I would but I have and you will too

Thanks for the encouragement. Hopefully time will help ... but, seriously, thanks for the encouragement.

Max

 

[bowser]

I question the " new normal" part.

With ALS moving so fast, the "normal " of today is quite different than the " normal" of just a month ago.

Adapting to constant change is a must for anyone involved with ALS ( patient, caregiver/spouse, family members )

I always maintain an upbeat attitude , but I am not one to " sugar coat" anything.

Looking back at the last two years, the constant CHANGES on the down hill progression is amazing.

Stay positive and be ready to adapt to CHANGE. ( It is a necessity )

 

[texastracy]

Welcome Max,

I also am a new member from Texas - Lubbock. I was diagnosed Aug 5 as most likely ALS and am going to Dallas this month to an ALS clinic. My grandmother passed away from it when I was 11 years old.

The brick on your chest will lighten, though sometimes it plops back on for a while. Be sure to have someone to vent to or come here. The people are wonderful and will befriend you in a minute. They know what you are going through and can help with ways to solve problems.

Tracy

 

[MaxEidswick]

Thanks for the note, Bowser (love the name) ...

>Stay positive and be ready to adapt to CHANGE

this may be my first challenge as I don't respond to change very well :-0. After trying to swallow this AM I may have to adjust pretty fast. This is not starting out on a very positive path. I have enrolled in an MIT Neurology course, so at least I will be better informed about my sentence.

 

[MaxEidswick]

Hi, Tracy -

>The brick on your chest will lighten

well put. Sorry to hear we are in the same boat. :-(.

The good news is that I got a new puppy yesterday. .

 

[vickim]

OOOOHHH what kind of puppy? My family is done with the pets thing. We had 2 dogs and both lived for 13 years before getting sick. I am afraid of getting another, it was so heartbreaking when they passed, and now I am afraid I don't have the energy to keep up with one and it might accidentally trip me. But they are fun and give such unconditional love.

 

[MaxEidswick]

>OOOOHHH what kind of puppy?

Another Irish (we have three others: Reny (IS), Boots and Beanie long-haired mini dachshunds. I have pics of them on [email protected] facebook.

Tripping is the fear Sandy & I are facing now. I was just diagnosed and still don't quite believe it although I cannot type with my left hand and have trouble swallowing now.