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Beach Bum

Distinguished member
Joined
Oct 5, 2010
Messages
142
Diagnosis
08/2010
Country
US
State
SC
City
Conway
Hi
Was in Duke Medical Center yeaterday and they confirmed my ALS,had a great time doing the EMG, interview and exam by Dr.Bedlack.I have lost a lot of my voice,I feel good and work out on the treadmill for 30 min a day and walk a beautiful park in Conway SC for 1 hour Sun morning.
Im new to this site,have been busy but will learn it.Three years ago I was told I was Diabetic,I fought it,lost 40 lbs,do the workouts,and had a A1C test the other day and it was 5.3,no more med for me,I want to fight this,but,but,oh well,life is life.:cool:
 
Hi there beach bum- sorry about the diagnosis. welcome to the group. im sure more people will be able to tell you a little more than i can, but just wanted to let you know that exercise isnt always the best for a PALS. I understand how you would think it is a good thing, but once your legs start being affected, working out can actually cause more problems for you. You will be more tired. And i believe, and please, someone jump in if i am wrong- but sometimes you can progress faster if you are wearing out your muscles with exercise.
But seeings how you just got diagnosed, and only your voice is affected so far, its probably ok to continue what you are doing.
Please continue to post, as this is a great place for support and to vent. everyone here "gets it", and will welcome you with open arms.
 
Hi Liz,
Nobody has told me that before,I will check with my Dr and see what he says,I do the treadmill at the senior center here in Conway,walk in 7,30 get on and it wakes me up more than the coffee.(LOL)
Hugs Ken
 
Hi Ken, Welcome to the forums. I think your accepting attitude will carry you a long way. Many PALS are in denial for some months following their diagnosis.

I think it is fair to say that opinions are split on the benefits of exercise. The opinions are mostly based on theory. One being that exercise destroys the muscles and they can't rebuild. However, some non-theoretical trials that simply measured the effects of moderate exercise on mice showed exercise to be beneficial or neutral. Extreme exercise seems detrimental. Studies of ALS mice comparing swimming and running found swimming to confer more benefit in terms of slowing progression and extending life. Still, moderation is likely a safe middle ground. If your legs are not feeling abnormally tired after your work out, I certainly wouldn't be concerned.

I can't walk anymore but still use a stationary bike to work my legs and get a bit of exercise.

Wishing you a slow progression.

John
 
Hi Ken, I think your attitude is wonderful, but am sorry your speech is going. Like John, I was riding a stationary bike when I could no longer walk. I would conserve your voice, but I'm sure you already do, knowing that when you get tired or stressed it seems to make it worse, whatever part of you "it" is.

I have so say, the swimming mice make for a very funny picture. Too bad they had to get ALS in order to get a pool!

Ken, I hope you do progress slowly and find the forum helpful as well as fun. We have the best bulbarians here.
 
I think exercise is ok for a while. I think there is a certain point in the progression when you need to stop. I would stop when I can see the waisting, plus you will start getting sore easy. If your getting sore muscles at all....your doing too much imo.
 
I think those mice just need to learn how to ride a bicycle and then they could be triathletes!

The first year and a half of my bulbar ALS journey I was climbing and hiking in the mountains (I couldn't talk but nobody minded because they were all huffing and puffing too hard themselves). Do what you can while you can but if it hurts more than it did before then stop. Something else to keep in mind is to not lose weight. It is too easy because of a combination of increased swallowing difficulties and (I think) an increased metabolic rate caused by the disease to burn more calories than you intake. Once gone those pounds are hard to get back.

Good luck
Barry
 
bulbarian since Feb. 2010 mine started with my voice also I was trying to loose weight also to get in better shape everyone wanted what i was doing to lose somuch weight so fast. I full of advice until i was diag.,then no one wanted diet plan. oh well nether did I hope you progress slowly
 
Thank you,I was swim team captain in HS,never swam with the mice!
 
Im playing with the site to see how it works
 
how do I know if someone is on line?
 
If they are on line, there is a bright green circle on the left side of the post on the column of information under their name. Note, there is always a darker green square under the name column right below the item showing the number of posts..
 
Welcome BeachBum,

It was my voice too that was affected first. Let me just say that I never thought I'd have any left, but I do, it kind of reached a certain level and stayed there.

About how to tell who is online, if you go onto the main page, where all of the forums are listed, and look down at the bottom of it, you can read the member's names who are online at the time. After you have more posts, you will also be able to click on "quick links" (above) and search who is online. Also, anyone who is online, when you are reading one of their posts, will have a green circle under their name, on the left, and if they're not, that circle is blue,
 
thank you,im 67,does that make a senior member?
 
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