Another dumb question!

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chefdeborah

Distinguished member
Joined
Oct 23, 2009
Messages
158
Reason
PALS
Diagnosis
10/2009
Country
US
State
Georgia
City
Peachland
Hey Yall...
Again, this friend of mine that is trying to "CURE" me is asking that I go to the gym and exercise with her and get a massage afterwards.Now, I am all for the massage, but didn't I read somewhere that exercise might help the muscles go bad too fast? After all, if you use them like she is wanting to use them, I would be on the floor when I finished!

HELP!:wink:
chefdeborah
 
Exactly what Brian said! Truly I think your friend, while meaning well, is in serious denial and needs to do much more homework! We don't want her killing you with kindness!
 
Agree with the above. Does the gym have a pool? You could do ROM exercise, that is, if you don't have a problem yet with breathing (you don't want the water to press on your diaphragm).

We don't want her killing you with kindness! Good one Katie!
 
oooooo... CJ you're brilliant... our Y has a pool, maybe if I go with him I can get Glen to do his ROM work in the warm water, instead of him insisting on getting on the gosh darned elliptical!
 
Thanks for the information. I didn't see anyone say anything about a massage though. Is that a no-no?

deborah
 
I just wanted to tell you there are no dumb questions.

My husband has ALS and I use to think if he worked at something, it would improve. I was WRONG! Thank goodness he never listened to me. It turns out, you have to save the muscle you have, don't try to strengthen it, just try to continue the use of it without over working it.

Your friend means well and yes, probably is in denial. I have been there. I did all the optimistic views and don't give up attitude. I was trying everything. Reality poured on my parade. I had to face the facts.
He's a drummer. He can't play anywhere close to where he was. He's probably done with that too. He will never run again.

I wish I could say something positive, all I can say is I'm here for you.
It's a terrible disease and I am on the outside looking in. Hang in there.

There are programs set forth by Physical Therapists. You might want to check it out.

Good Luck.
 
Every time I've had a massage since diagnosed, despite telling the masseuse about ALS muscles being tender, I've been either bruised or sore for a week. When they do it, if it hurts, quit and either forget the massage idea or find one who listens.

AL.
 
I have wondered about the exercise question lately too. I have never been a gym guy and wouldn't know an arm curl from a curling rock but I have always been active as a hiker, skier, climber, scuba diver and I am wondering if my leg weakness is being caused as much by me not doing anything but sitting in my recliner as it is by actual ALS progression. I do flop around the house, go out occasionally, and I have some rubber band thingies from my PT for flexibility exercise (range of motion maintenance) of my legs and arms and have been doing them. I sure wish I could swim again but that is a no go with not being able to close my mouth and with my peg tube, oh well....
 
Barry,,,My doctor told me that he has a person that has a PEG tube that swims in the ocean every day. Of course, he doesn't have ALS like we do, but he does have a PEG tube.

I FINALLY have an appt for a clinic visit at Mayo in Jax next week! I am going to ask about the ROM exercises too, because I am just sitting in my recliner or at my desk either crocheting or on the web.

A person called me from Atlanta and told me that they had finally gotten a clinic about 20 miles from my house, so I might just transfer to that one, after I see what it is all about at Mayo. I am afraid after I get to where I can't do for myself, it will be too hard on my hubby to take me 5 hours to Jax!

deborah
 
YOU ARE NOT GOING TO BELIEVE THIS! My friend that is trying to "cure" me just put a notice in our church bulletin that she is having a "healthy living" class. She wants to have people come and see how to get rid of their medicines! OH NO! Hubby said they shouldn't have put that in there...if someone does get rid of their meds and dies, someone will have a HUGE LAWSUIT!

We call her Dr. Pat...and I think she has started believing it! OH MY!

deborah
 
Barry I've been wondering about the inactivity too. I was so active up until September, then had to cut way back and finally stopped everything in November. Now my legs seem to be getting weaker every day and I'm using the wheelchair more and more even around the house. They always used to say "use it or lose it" but with ALS it seems more like "lose it whether you use it or not" and I don't know if anything will help.
 
Deborah, it kinda seems like your friend has picked up a sort of God Complex. Her heart is in the right place, but her actions could really hurt other people. I would try and talk to the pastor, priest or whoever is in charge of the church and let him know about your fears. She could be one of those people who says God will cure you stuff. You are right, OH NO!
Hugs, Kari
 
There is a peg that you can get so that you can be in water. I think my doctor who put my peg tube in called it a button. I had planned to change mine after a 6 week wait but then got the Hickman cath so I did not bother. I am going for a check up in March I will ask for the name of what it is called. I noticed that hanging in the house just made me feel weaker I make a point of going shopping and using a shopping cart as a walker 2 or more times a week. At first I was very tired and short of breath now I can do it fairly easily but require a little power nap if I over do it. It has helped the circulation in my legs.
 
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