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bigmark1954

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PALS
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taylorsville
OK...I AM GUNNA WINE A LITTLE.....I have my second clinic visit in two weeks, and it is stressing me out bigtime! I don't know if it is a case of "what you don't know won't hurt you" or just kinda feeling humiliated at this point!
Just kind of fishing for your attitudes about the ALS clinics. I know I have to go....but really don't want to. I have only minor changes, some atrophy, and I think the inner left tricep has pretty much burned out. Oh, and speech is worse.
Last visit was hard for me in regards to the cognitive testing...being hard to read out loud, and memory dynamics. I felt fuzzy with the Amytripitaline and Prozac that I had been on. This time I really feel foggy, they have doubled both drugs, and it has definitely affected my concentration.
****DISCLAIMER: I have read the stickies ..and am still gunna whine!
Here is a pic of my best friend "Harlee"!
 

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Mark, think you should definitely go. If for no other reason than the breathing test. It can sneak up on you, might stay steady for years or drop suddenly without you knowing. Allows you to make decisions about other things, like maybe a peg, or whatever. Also to get any additional equipment that you might need, say a bipap
 
hey Mark :)

Love the shot of Harlee, even tho I don't really like dogs ...

>OK...I AM GUNNA WINE A LITTLE.....I have my second clinic visit in two weeks

I am really with Dalvin on this one -- I hate clinic, especially the blood draws and the coordination tests. If they demanded EMGs I wouldn't go. But the best/worst is meeting my peers (there are about 30 in our group), seeing how they are holding up, progressing, etc. All-in-all, they are an upbeat bunch -- Sandy is much more social than I, but for me it's a good experience. I am also glad when it's all done :) ....
 

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Hi Mark,
Like Dalvin and Max said, please go to the clinic. The breathing test is so helpful to point out problems. At my first one I came back with a BiPap and 72% FVC. When I went to my secon one I had improved to 76%. I know I won't have that improvement happen any more. But it was good. I really like my doctor and all the therapists at clinic.

We'll be thinking of you and saying prayers. So be sure to let us know how it goes. I go next week on the 9th in Dallas.

Max - aren't you going to Washington for an advocacy meeting that weekend. You'll be in my prayers also.

Tracy
 
Meant to share another pic of Bella. She takes care of me when I walk around my house with the walker.
 

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went to clinic every three months for almost 4 years,,,four hour drive so went up day before...always learned something new by asking lots of questions....met several pals now on facebook with...nothing to fear...went in PWC JAN 2014...Haven't been there since nov 2013 because of motel accommodations...will give a try in distant future...GO FOR IT
 
>Max - aren't you going to Washington for an advocacy meeting that weekend

yup, trying to gather strength :)

love the pic of Bella!

Here is very undignified Paddy ...
 

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Max, too cute.

Mark, sorry we hijacked your thread. But the dog pics get us every time. Hope clinic goes well. I understand your concerns. I go on this coming Friday. Worried due to increased troubles clearing phlegm out, cough just doesn't work.

Daughter's car was in the shop on Friday so she used mine while I was at work. Bella came along to "protect" me from all the bad school kids being picked up by their parents. She was so eager to see me.
 

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>Mark, sorry we hijacked your thread. But the dog pics get us every time.

:) -- you don't want to know about my dog and puppy shots!
 

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>Mark, sorry we hijacked your thread. But the dog pics get us every time.

No worries....I was just whining, we all have to do that once in a while..................:mrgreen:
 
Hi Mark,
I love the pic of Harlee. He is so cute. I miss my little puggle Skipper so bad. He was hit by a car a few weeks ago because he wasn't on his leash like I asked/begged Brian to keep him on.

My dad was kind of dreading his visits to the VA clinic and also to his check-up at the ALS clinic this past week as well. But, he was in great spirits after he saw them. They gave him alot of tips on things that will help make things a little easier. The VA clinic even mentioned maybe even buying him a van with a lift and everything. He sees a Dr. Heinzeman (sp) at the ALS clinic in Dallas. Dad said he is fantastic and he wanted quit praising the VA clinic there either. So, it made me happy that he is getting good care by them.
 
so Mark, are you going for that visit this week and are you feeling more prepared now?
 
>so Mark, are you going for that visit this week and are you feeling more prepared now?

Ditto that ?
 
so Mark, are you going for that visit this week and are you feeling more prepared now?

Tillie

I found out my appointment is May 22........I am still dreading it but need to go I guess. I felt like I was being processed on a conveyor belt last time...which was my first visit. For some reason I think my doctors are not very compassionate. My neurologist that diagnosed me......looked me straight in the eye and said "you have 1-3 years left, get your advanced directives in order"......he could have sugar coated it a little bit!
I guess when you deal in terminal diseases...telling it like it is becomes second nature.

HAPPY MOTHERS DAY TILLIE!
 
He shouldn't have said that! They can't forecast progression. Period. However, 3 years or even one wouldn't sound so bad to me right now :)
 
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