just found out

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scuba

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Hi out there....I have read a bunch of the threads, and am quite sorry about everyones situation. I am 48 in super good shape, eat healthy, sleep well, and just have been diagonsed with ALS. I noticed my speech was not sounding to good, and was reminded by friends that I sounded like I had a few too many to drink. It comes and goes, and at times gets pretty frustrating. I also have twitching in my upper body, particularly in my arms. When getting tested, some muscle damage has occured in my right arm. I have noticed for some time that I was weaker in my right arm while working out, but it sure isn't getting stronger.
I appreciate anyone out there who can offer any suggestions on what to do, not do, eat, not eat....I am a determined soul, with great faith, and believe that this can be beaten somehow! I recently read "when the body says no", and there was lots of information in there regarding how this disease may manifest itself over time. I recommend it to anyone.
Thanks so much for this forum and the opportunity to talk. Hopefully I can return the favour to you!
Scuba
 

liz

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Hi Scuba -

Welcome. One piece of advice - get yourself to an ALS Clinic that specializes in the care of this disorder. Check the quick links to find one in your area.

You said you've browsed, so you already get the idea of this site. Ask for advice, share helpful tips, vent your feelings, tell a stupid joke, etc.

Don't be shy. :)

Liz
 

marlo

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Feb 20, 2006
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Welcome Scuba,
Sorry you have a need to be here but ,, glad ya found us. I am glad to see you have a good attitude,, you'll need it. In fact that is what will help you the most,, a " good sense of humor". Come back and talk to us again,, and ,, keep us posted on your progress.

Love and Prayers,
Marlo
 

Al

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Hi scuba. Welcome to the forum. You say you are working out. Most people will tell you that working out is fine but not to use heavy weights. Too much strain on the muscles kills cells and they don't regenerate. No pain no gain used to be the in thing. Now with ALS it is have pain, have no muscle. There is a fine line between good exercise and bad exercise. Take it easy. AL.
 

scuba

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kelowna
Thanks for the kind words. Yes a good attitude is the only way to get through this sanely I suppose....
Can anyone tell me about diet....I am meeting with ALS team in Vancouver in late January, but in the mean time, have heard different things. Like should I avoid all coffee, even de caf...what about beer and wine? Is there some foods I should completely avoid, and some that I should eat more of?
Any help would be so appreciated!
Thanks
scuba
 

liz

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Hi Scuba -

My doc said avoid caffeine but I think that's because my sleep was all screwed up from anxiety. He didn't bat an eyelash when I referred to my own enjoyment of a drink at the end of the day. If you,ve browsed, you'll see plenty of folks partake of alcoholic beverages with or without their doctors' blessings. All things in moderation, I'm sure.

As far as supplements go, antioxidants seems to be the recommended thing - maybe your ALS Clinic could send you some info in advance of your appointment if you asked. Check the Scam Alert threads to get info on some things to avoid.

My doc OK's ongoing moderate exercise with the caveat that if it starts to hurt, stop doing it. You can't replace muscle once it is gone due to ALS but you can keep what's left strong for as long as possible.

We're also supposed to try to maintain our weight. No dieting!

Please keep in mind - I am not a doctor nor do I play one on TV. You must take such things into consideration when you are asking us for this type of advice.

How are you holding up mentally? Do you live with anyone? Are you still working? Are you tired of my nosy questions yet? :-D

Have a nice day.

Liz
 

Al

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Hi Scuba. A lot of people try to avoid MSG and aspartame as well as the caffeine. The thing with this disease is that no one really knows what to do for sure. Pick a course for yourself and adjust it along the way. You don't want to stop living. You still have to enjoy some things in life whether it is a steak or a bottle of wine on a Saturday night. As someone else said moderation is the key. AL.
 
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scuba

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liz said:
Hi Scuba -

My doc said avoid caffeine but I think that's because my sleep was all screwed up from anxiety. He didn't bat an eyelash when I referred to my own enjoyment of a drink at the end of the day. If you,ve browsed, you'll see plenty of folks partake of alcoholic beverages with or without their doctors' blessings. All things in moderation, I'm sure.

As far as supplements go, antioxidants seems to be the recommended thing - maybe your ALS Clinic could send you some info in advance of your appointment if you asked. Check the Scam Alert threads to get info on some things to avoid.

My doc OK's ongoing moderate exercise with the caveat that if it starts to hurt, stop doing it. You can't replace muscle once it is gone due to ALS but you can keep what's left strong for as long as possible.

We're also supposed to try to maintain our weight. No dieting!

Please keep in mind - I am not a doctor nor do I play one on TV. You must take such things into consideration when you are asking us for this type of advice.

How are you holding up mentally? Do you live with anyone? Are you still working? Are you tired of my nosy questions yet? :-D

Have a nice day.

Liz
Like your being nosey! No I am singel, was married for some time, but not for the past few years. No kids either. So yes I live alone, but am surrounded by great friends, so that is all good. Mentally I am ok, but it is difficult because my symptoms are just starting to show up, so it makes it hard to imagine how it will turn out. I have a meeting with the ALS team in Vancouver in the New Year, and I suppose that will be a bit more challenging.
Thanks for your questions and interest! I appreciate it very much!
 

liz

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Scuba-

I was really just concerned whether you have support "on the ground", so to speak. I'm glad to hear you have some close friends nearby to help you out. Either way, I know the waiting game is rough and can mess with your head.

I was very anxious going into my first appointment at the ALS CLinic - cried in the car all the way there (driving of course, since I'm such a control freak - I only ever let my husband drive when I was in labor. :rolleyes: )

I can't tell you how much better I felt after placing myself in their hands. Short of making this whole business go away, they did everything one could hope for to reassure me that I will get what I need when I need it. Hang in there.

Oh yeah, another question - why "scuba" - does that signify something about you?

Just curious,

Liz
 

Robie

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Me too, just found

It was out of the blue, blindside by test today. I had been told it was excluded, new neurolgist, best in the DC area just told me I had ALS.
 

scuba

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British Columbia
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kelowna
Blindsided is the understatement! Wonder why these things happen to us, but I guess the other question is why not! I wish I had something to say that could help, but I can't think of anything......I know what you are feeling...and am so so sorry for you.
Let's stay in touch.

scuba (i am passionate about scuba diving...thus the name!)
 

liz

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Scuba -

I'm a water girl myself. Grew up competetive swimming and continue swimming to this day. Love swimming with my kids. Love the ocean, too, when I can get there. Dreading the day I have to give it up.

Liz
 

scuba

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Country
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kelowna
Part of my denial is making sure I don't give up hope. Although I know I have it, I will do everything in my power to delay the inevitable. I am also a Christian, and that offers huge comfort to me. Not sure what is going to happen, but in the mean time, it has added a perspective to my life that I did not have before. It is good, and it is also disappointing, as I have delayed doing a few thing and saying a few things that I ought to have a long time ago. Perspective is rewarding if we act on it, and that I plan on doing. I can't think about when I can't do something, rather I dwell on things I can do now....I pray that a good attitude will accompany be through this, along with of course my faith.
sorry for the ramble...I come from a gene pool with lots of preachers in it!
 

Harper

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Common Thoughts

Scuba ...

Your comments -- and your interest in Scuba diving -- reflect much of what I've been thinking since Veterans Day last month ... that's when a kindly female neurologist told me I have ALS. Yes, I was in the military so I guess my situation can be added to all the statistical studies about military veterans and ALS. I'd ignored all the symptoms and finally acquiesed to a neurological workup when my sister -- a nurse -- told me in no uncertain terms it was her opinion I had this particular disease. Frankly, I'd never heard of it and when I visited the doctor the only rational question I asked was -- how long do I have? Since then I've learned enough about ALS to raise my spiritual awareness and become very angry at the slow pace it seems to proceed. You're right ... one does realize there's much of life that's been left undone, by mistake or purpose, and all you can do is not repeat your past behaviors -- do it while you still can has become the motto of the day.

The most important factor in managing the illness seems to be mental attitude and the postings on this forum reflect that being as positive as you can helps ease the trial if not cure the illness. In so far as diet, exercise and supplements, those seem to be a matter of common sense -- I was still lifting free weights until a couple of months ago and wondering what was happening to the muscles of my body. Duh.

It's a long way from your heart to your head, but at some point you'll have the answers to all your questions -- either from self-knowledge or the kindness and advice of others. In the meantime -- do what you can, while you can.

There doesn't seem to be a lot of personal information about ALS other than the postings on this forum. I checked Amazon.com and found only two books written by people who have the disease. I'm curious as to whether anyone knows about or has a
personal blog on the Web concerning the day to day impact of dealing with ALS. I've been considering creating one as it seems to be a good way of getting some of these mental things front and center without boring one's friends or family.

Take care.

Harper
 

scuba

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PALS
Country
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kelowna
The hard thing for me will be my "vainity", as I always have been in great shape, and I guess the thought of what will happen....well that is where the vainity will make me humble. Working out has been my way of dealing with the stresses of life, and found that it worked. However I did read an excellent book called "when the body says no" I believe the author is Gabor Matte...no sure of that though....and it talks about the common theme in diseases such as ALS. When reading it I underlined several paragraphs that described me to a tee! I recommend it, the author is a physician and a therapist...and has dealt with many ALS patients.
Thanks for your note....
 
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