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lynster

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Hi All,
The post above means All-But-Official. We saw Mike's neuro yesterday, and although he has to be tested for heavy metals and for West Nile, his neuro is only doing those tests to be sure. The Dx is ALS w/Atypical onset. It came on in his trunk first, affecting his breathing. Now on a BiPap, he is sleeping fine, and even working. Spreading to arms & legs relentlessly.

All I want to do is buy a cheap set of breakable dishes and smash them against the concrete as hard and as fast as I can! I HATE this !@#$ disease! Already I am at a loss as to what direction we go next. At least the neuro is located in the same building as the ALS clinic, so we will have lots of support. I gues we will follow her lead and take it one step at a time - first by going to a pulmonologist to reassess his breathing.

If we stumble, I know that I can count on all of you for your support. Already you feel like family. Thanks.

Lynn
 
lynster,

I feel for you and your husband. This is just a horrific disease. I dont even know what to say.....I am sorry does not cut it. It is just awful. I will pray for you. YOu are in my thoughts.

best wishes and warm regards,

apri;
 
Lynn,

Yes, bless your heart. I'd have to go to a yard sale and get some fancy-schmancy china and throw it, just to make myself feel better! But yes, the cheap breakable dishes do just fine, I tried that myself about 2 months ago!

Don't bombard yourself with worrying about the next step, just try your best to take a day at a time. I realize that is easier said than done, but always remember, the sun will still come up tomorrow!

Talk to us as much as you need to, I will also keep you in my prayers,
Keep the faith,
brenda
 
Even worse!

I forgot to tell you all the worst! The neuro told Mike that he needs to be on a high-fat-high-protein diet! Aack! After all the time and energy I put into healthy meals (and taking off 80 lbs), I find that he gets to eat whatever he wants! Whole milk! Rocky Road Ice Cream! Butter! Needless to say, I called him a nasty name right in front of the neuro!

I know they say life isn't fair, but can you believe that? (Sorry for the levity, but you know, sometimes you have to live with the cards you are dealt!)

I am going to take this one step at a time, one day at a time, and I know that I will make it with all of your help.

Thanks.
Lynn
 
Breathe dear, breathe

That's great about taking off 80 pounds! Was that you or Mike? If it was you, the neuro didn't tell you to eat high fat, high protein, did he?

You'll be fine, just save the Oreo cookies and milk for me!

Keep the faith,
brenda
 
Thanks Brenda.
I guess I did sound a bit frenetic, didn't I?
However, I was the one who has taken off 80 lbs. and I'm proud of it...
 
Lynn,

You sound much better now! And- way to go on losing 80 pounds! That is fantastic- you should be extremely proud of that!

Good to know you're a little less stressed than before, maybe? Have a wonderful evening, and don't raid the fridge!

Keep the faith,
brenda
 
Lynn

Sorry for the diagnosed. You sound incredibly strong and that will help I'm sure.Any one who can loose 80 lbs. is a very determined person and makes me feel hubby is in the right hands. You do sound better than first post and that is great, but if you slide back get on here and tell us how that plate breaking feels, me myself would treat myself to real expensive ones just for effect. I will keep you both in my prayers, I believe that is the best thing people can do for one another. Take care and keep in touch.


Renee
 
Hi Lynn. Feel free to vent or rant. We all do it once in a while. Remember to live for today but plan for tomorrow. You can't let this disease get ahead of you.

AL.
 
Hi Lynn,
I am sorry to hear about your husband...I just wanted to chime in on the diet, if you didn't know, the MDA website has a great list of "meals for easy eating" under their als division on the website. The meals are all high fat, protein, etc. I eat what Jim eats, just much less, and have actually lost weight since his diagnosis. (Stress?HA HA)
Here is one thing I make Jim that have helped him stay stable with his weight, despite bulbar onset
Shake - 1 cup milk, 1 cup high fat vanilla ice cream, 4 scoops protein powder, 1 cup mixed frozen fruit, 1 banana. - shake is high calorie, high protein, the protein powder has a lot of minerals/vitamins so it is a complete meal.
Also, mashed potatoes are easy to swallow, I add calories by adding heavy whipping cream rather than milk and LOTS of butter...boy, are those hard not to eat a lot of ..:twisted:
One of the things we were told was that weight and breathing were the two most important indicators for longevity. So, whatever it takes to keep his weight up, trying to do.
Andrea - wife of Pals Jim
 
Thank you all for your input. Mike does not have any problems eating - yet - so I can pretty much fix anything for us. (He can add all the butter he wants!) My understanding is that the weight that he is right now is where they want him to stay. He thinks he is a little overweight, but it sounds to me like those that are a bit heavier and have higher cholesterol actually do a little better. Quite the opposite of what we are told, isn't it?

I will keep the banana recipe for when he needs it, since he loves bananas!

Thanks again.
Lynn
 
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