just found out

[scuba]

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]

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]

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]

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]

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]

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]

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.

[scuba]

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]

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]

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]

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]

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]

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]

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]

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....

[Al]

I have a blog for you with links to others. Oh and by the way I used to scuba dive too but never on the west coast just down south and the South China Sea as well as Ontario.

http://www.users.bigpond.com/paulfran/Default.htm

[trustinggod]

Harper,
During the years that I helped my friend deal with ALS I made it my mission to learn everything I could about the daily living with this monster that is ALS. A couple of books that I read and found helpful for knowing what day to day living with ALS is all about were; -Tales from the Bed by Jenifer Estess
-I choose to Live, A journey through LIfe with ALS by William Sinton
-Rowing without Oars by Ulla-Carin Lindquist.

I hope this is helpful for you.
God Bless you.
Jeanne

[Harper]

Jeanne and Al ...

Thanks for the references to the books and blog ... I'll see if I can find these on Amazon.com and I've noted the blog url.
Thanks for your blessing.

Harper

[trustinggod]

Harper,
I see that you are in Texas. I would be happy to send you the three books I mentioned.
I am a "bookaholic" and running out of bookcase space. Would also love to know that someone else could be helped with the knowledge I gained from these books.

You can email me at maaghouse@aol.com with your address if you would like me to send them to you.

Take care,
Jeanne

[Harper]

Jeanne ...

Thank you for your generous offer to send me the books you mentioned -- a writer will never turn down the opportunity to obtain a book! I'll e-mail you with an address and details ... thanks again. Your kindness is sincerely appreciated.

Harper

[alan911]

I have a blog for you with links to others. Oh and by the way I used to scuba dive too but never on the west coast just down south and the South China Sea as well as Ontario.

http://www.users.bigpond.com/paulfran/Default.htm
AL, anyone interested in "more about ALS" should definitely check that website, and especially take the link to the one by Steven Shackel. I learned a few things about a positive attitude that will help me.
Thank you for the suggestion.
Alan

[xsparklingwinex]

I don't know if this will help anyone or not, but my Neurologist suggested I take 900 mg of CQ 10. It is an over the counter supplement. It's somewhat pricey and I'm not sure if it works..... Can we ever be sure? lol but I figured I'd pass it along since I have been taking it. I also take Vitamin C, Vitamin E, a GNC product called "Immune Defense" and also a cranberry pill. The Doc has tried to prescribe me meds but I don't like medicine to be honest and the one time I did take something he prescribed (Baclofen) I ended up with side effects as usual lol. So, if you are into the natural stuff as I am, there are some things you can look into and decide on at your own will :)

[CindyM]

Hello Harper and Scuba. Welcome to the forum. Harper, I like your idea of a blog. I'm thinking of starting one myself, once the clinic confirms what the other docs suspect. I think you are on to something about how much info to give friends and family. Thing is, I suspect they really want to know but maybe they need to hear it only in increments and only when they are ready. So a blog lets them take control of their own learning, in a way. If it gets too much, they can skip a reading.

Anyway keep up the good attitudes. At the end of the day the only choice we really have is the choice on how we will respond.

[Harper]

CindyM ...

You're right ... friends and family want to know what's happening, but usually with reservations as to how much you tell them -- or how honest you are about your feelings. It seems to me that a blog -- published to persons unknown -- would give one more freedom of expression ... and as you mentioned, reading it would be a voluntary
exercise.

As a photographer [was] my computer expertise is limited to Photoshop ... so I'm asking you -- or anyone else who may know -- how does one set up a blog? Is there a step-by-step website you can refer me to? I'm already keeping a journal -- something I've been doing for years -- but, lately my reflections surprise me with their blunt honesty -- so I've got a 'content' start.

Anyway ... I'd appreciate your advice or recommendations from anyone who knows where I could go to start this process.

Thanks for your welcome.

Harper

[scuba]

Just wondering if anyone can give me some insight to what I can expect next! I have had muschle spasms in my right arm for a couple months, but now it has moved to my left arm, shoulders, and now to my abs....My right arm and hand feels like I slept on it, but I do have good mobility still, although it is weaker than my left side by a measureable amount. Does the twitching ever stop?
Thanks for any insight!!
scuba

[Al]

Hi scuba. The tingling is more or less usual but will go away. The twitching usually keeps up until the muscle is totally atrophied. When it stops the muscle is gone. As you lose muscle the twitching will be less noticeable. AL.

[CindyM]

Oh. Gee Al, I don't know how I missed that point about the twitching being less noticeable. I thought I was in some sort of plateau since I twitched like a weed in the wind all summer and fall and now I hardly notice. But I see holes where muscle once lived so I guess I'm normal after all! :-D

Harper- go to Blogger.com or any one of the other free blog sites and give it a look. I've never actually done this myself, keep in mind. You know what they say about those who can do a thing VS those who teach...

[Harper]

CindyM ...

Thanks for the reference web location. Am on the way to check it out.

Harper

[BWk]

Holl,
A lot of people take Grape seed extract for MS and some with als like myself take it. It is inexpensive to buy. Barry

[BWk]

Al,
I've noticed my twitching getting less and less intense and is mainly in the calves and arches of the feet now and not much going on in the upper body now except some twitching in the upper lip and I'm not getting any weaker that I can tell. Can move arms and legs fine or was this the way it was with you also, just takes longer for the muscles to deteriorate in some of us than others? Barry

[Al]

Hi Barry. It does take longer to atrophy in some that others. The general shape of the muscles and how big they were to start with will influence it. Body builders will probably take longer. Mine started gently went crazy and are slowing down now but so am I in general. As you saw in the hand pictures not much muscle left there and my calves are getting a bit skinnier. People still say I look good though. I just tell them "You haven't seen me naked" That usually throws em off. LOL. Have a good one. AL.

[xsparklingwinex]

Thanks for the tip BWK :-D

[Barbie4]

Here are a couple of extra titles you might be interested in:

"Morie, in his own Words" a helpful little book on keeping a good attitude through ALS and lifeskills in general.

" I remember running, The year I got everything I wanted and ALS"

Barb

[Beebe]

Hi Barbie, Did you read The Jennifer Estess story, Tales from the Bed. It was very good reading enlightening. The movie is coming out in January 2007 on Lifetime Channel. She and her 2 sisters started project ALS. They fought for stem cell research here in U.S. Well, they are doing it at Columbia University in N.Y. City. It's privately funded of course. Just a little input. My Best to all, Beebe

[cartman]

scuba

when i was first diagnoised with als my physician, a female neurologist, looked rather sadly at me and said, "their is little we can do for you, our job is to keep you comfortable as this terminal disease runs it's course." she referred me to university in st louis where the chief neurologist ran many tests and confirmed the diagnosis and told me i was in the latter stages of als. now 6 months later i understand both of their candid statements. i am confined to a motorized scooter, my muscles twitch from feet to neck, have difficulty breathing and eating and experience significant skelatal pain. i am blessed with caregivers who help me maintain my sense of humor and other than those times when i need help treat me as a well person. there is no time frame with als. it treats each of us on it's own time schedual. i would advise not to look for magic bullets, but do take those supplements that make you feel better. seek what makes you comfortable. fill your day with those things you can do. each little plato with als will change and leave us with a few less phyical things we can do, just remember to concentrate on those things you can do, not the things you used to be able to do. we are all here for each other and that makes each day worth the effort.

cartman

[liz]

Cartman -

I had such a different experience once I got to the ALS Clinic. The doc there refuses to call ALS a disease - says its a disorder we're just needing to learn to manage better. He corrects his staff any time they say otherwise. I'm not saying the guy's got his head buried in the sand but the message is "hang in there and be hopeful" - none of this go home and wait to die business. I think the professionals really need to be made aware how big a difference their "bedside manner " makes in how well we feel and do.

Scuba-

I don't think anyone can really tell you exactly what to expect next - there is such a variety of ways this disease (oops - disorder) progresses. Sample the threads and you'll sample the possibilities.

Barry - What is grape seed extract supposed to do for us?


Liz

[dianelynn17]

:neutral: Hello everyone,
I wrote to you all about Mom being diagnosed with als. Well I can see she
is getting weaker but her eating is still good. She hasn't choked as much since
she is taking her Rilutek. I guess I am wanting to know what all we can do
when she gets to the point where she can't get out of bed herself or wash
herself in sink in mornings or walk out to the kitchen to the table. Or get
up at nite to go to bathroom. I know all this is going to happen and we have
an appt. on sunday to talk to the hospice people. This is so hard to watch my
dear lil precious Mom like this. I can't even imagine how it must be for her.
Her speech has gotton worse. I just hate this. She lives with My Sister and Brother
and I am so blessed to have her with them. I had to quit my job so I could take
care of her and be with her. I am there mon-fri 8 to 5. I feed her her 3 meals
and take her for rides and just spend time with her. I want to make every
second count. I lost my Daddy 2 1/2 years ago and was with him to the end.
Its hard to go thru all this again but I know God will give us all the strength
to do all we can for Mom and help keep us going. I try to put on a happy face
and laugh and its easy but its getting harder. I sometimes hope God will take
her before she really gets bad and I don't want her suffering. What really is
hard also is she knows everything that is happening to her. Wow. What hell
that would be. She still walks with her walker but slower now. We have a bath
aid twice aweek to help us but soon she will have to go. I really hope hospice can
help us. When I get home I keep a journal like I did with my Dad. I thank God
for letting this be a Good day with her. with really no problems. I wake up and
pray that this will be a good day with Mom and she will eat good and not
choke. It really is taking a tole on me. Don't get me wrong, I wouldn't have
it any other way and I am so Blessed to Have my sister and brother there with
her taking good care of her. They both have full time jobs. If I have said this all
before, forgive me. I just need you all out there right now. It gets overwhelming
as you all may know. It took 1 year to find out what was wrong with her. that
is what sucks also. It mimics so many other diseases. How do I communicate
with her when I can't understand what she is trying to tell me? Get a pad out
and let her write it down for now. I did today but when you are out and about
and she is trying to talk .. and you can't understand her??? :oops: its just
so hard.:cry: Thank you all for being out there and here for me. You all are
wonderful folk with your own problems but we are all here to help eachother.
Please help give me advise on this. If anyone has had a loved one in their
later stages could you explain to me what you did and what all happen.
Thanks so much and God Bless You and Your families.
Diane