Clinic Visit

[gbrown]

I went to my ALS clinic yesterday. It was my 1 year anniversary of going to the clinic. My RT said my cough ability had risen and my inhale capacity had doubled. My lung capacity was about the same.

I talked to the Neuro about taking Lipitor and he first said that a statin like Lipitor was normally prescribed for patients to help for 5 to 10 years down the road and with ALS maybe that wasn't such a good idea. But, since I am going on 8 years with the disease he could understand why the G P prescribed it for me. He also said that it was now prettry certain that people with high cholesertol progressed more slowly that I should talk to my GP about discontinuing the Lipitor.

Since his diagnosis, I asked him what he thought about my progress. He said it was "Awesome". It was great to hear that one word.

Hope for best,
Gordon

[awieleba]

Good news Gordon,

you dont usually hear the word "awsome" with als. I am so happy for you that your progression has been slower than others. Heres to anther 7 years. It should give the newly dx some good relief of worry that it may not progress as fast as some.

Take care,

april

[Jennifer51]

Originally Posted by awieleba

Good news Gordon,

you dont usually hear the word "awsome" with als. I am so happy for you that your progression has been slower than others. Heres to anther 7 years. It should give the newly dx some good relief of worry that it may not progress as fast as some.

Take care,

april

Yep, it is good to hear something positive, more for us all to hold on to.
Heres to many more years to all of us....well done. Jennifer51

[sisgldnhr]

What fantastic news. Congratulations!

Sis

[Deb33]

I haven't been dx yet but hearing how well your doing gives me hope.
Thanks for your post.

Deb

[vmd]

Gordon:

What's your secret?

[laurel]

Hi Gordon,
You said that your neuro. said that people who have ALS who have high choloestrol progress more slowly? That is very interesting if that is what you meant. If so, I wonder why?
Laurel

[rose]

Gordon, that's truly wonderful, Do you think its what you do or don't do? Congratulations

[gbrown]

Laurel:

There is a website called ALSTDI Forums that explains it under the Research and Treatments section on page 7 of that section under Lipid Metabolism. This began as a theory but has been proven by tests that people with high cholesterol generally progress slower, which may have something to do with why statins are bad for people with ALS.

As for anything I'm doing or not doing, I only try to do things that will help me, ie, changing my diet, doing stretching excercises and range of motion excercises, keeping a good outlook, and most of all the help and support of my loving wife and caregiver Mitzi.

If you have never visited the ALSTDI Forums, go there and take a look. It is one of the most informative sites about ALS that I've found. I personally like this forum best because of all you good people who can relate to all the things we go through. The TDI website has a lot of researchers and medical people on it that really get into depth. Most of the time they go over my head but I like to peruse it anyway.

Gordon

[awieleba]

I have no dx but I am going for a large fri and hamburger for lunch! gotta get the cholesterol up!

(dont worry I am sure you mean high good kind not bad kind, right)

april

[sharonca]

My neuro told me that cholesterol is backwards for ALS along with most other things.

High BAD cholersterol is good.

Make it a bacon cheeseburger for lunch - maybe add a big shake and some greasy fries!

Sharonca

[PDaddy]

Right on Sharon, since we learned about the good bad cholesterol my wife makes me breakfast every day with bacon, and a typical lunch for me is the bacon cheeseburger, bring it on!!

[gimpydad'slady]

They told my hubby the same thing. I was concerned about all the red meat and bad cholestral foods he was consuming, and his Clinic Docs says give it to him, all he can eat!
Of coarse this put a very big smirk on my hubby's face If he could eat a greasy cheese burger, he would eat 2 of them!!

[awieleba]

does anyone know if als gives high cholesterol or if you have high choles it can predispose you to it? I read somthing about als and it may stem from a lipid metobolism connection? Just wondering about what your neuro's have said about the connection.

It was strange because I have always had way low cholesterol. I was one of those veggie/no meating eating people for 10 years. Only fish. and working out. well, when I went for a check up when I had all these strange things going on..low and behold my cholestrol was high and out of range. and so was my liver panel. (not from drinking, I had not drank in 1 year, i do now though!).

Anyway, I thought it was strange that it would go up like that and it coincides with all this new "stuff" going. my doctor said it was due to pregnancy, maybe. I did eat a ton of ice cream.

I asked my neuro about the lipid metablism connection and told her about my blood work. she said those studies are small and you dont know what the folks had before, she did not believe there was a connection with the liver enzymes or lipid metobolism. she did not say anything about cholestrol. (she is the professor of neuro at teaching hosp. and head of the als clinic)

anyway, what do your neuros think about the lipid connection?

thanks in advance for my silly questions all the time.

april

ps. I have been eating meat and mcdonalds latley.

[brooksea]

My husband has never had high cholesterol until recently. His blood was tested prior to starting Lithium and the cholesterol level was slightly high.

(I also read at ALSTDI about Lipid Metabolism. Those people are geniuses!)

At the last clinic visit the neuro looked at all the blood tests that had been run by the GP and noticed the cholesterol result. I asked him what his thoughts were and he does not believe there is a connection. Basically the same thing your neuro said April and he's the head research dude and promptly dismissed that line of thinking.

I respect his opinion, but I also feel we as PALS and CALS need to advocate for ourselves and research every angle of this disease and do whatever WE feel is helping. After all, WE are the ones living with this, not the nueros! At the end of the day they can motor on over to the country club and discuss over a martini their research papers while my PALS is slowly being paralyzed and there ain't a damn thing I or they can do about it!

It is hard to keep weight on when you are a PALS, a little cholesterol trouble would seem a minor bump in the road compared to everything else. IMHO

My husband eats and drinks whatever he wants to. Chef Boyardee (yuk) seems to be a favorite lunch meal for him.