Re: Exercise

[Guest guest]

Of course they will!!! You should be very proud of yourself though and I

really mean that. Well, now we all need to be proud of whatever we have

lost. But the tips I am getting are going to help me so much. I have been

dumping and didn't even know it. I am finally getting smarter. I am going

to the frozen drinks totally, so I can mix with my own filtered water and

then I know I will be safe. Stevie what solid foods are you eating and how

often and how much? Tonight I had rice that had been made from orange juice

and a can of chicken rice soup. It may have been too greasy, as I feel a

little queezy right now. Do you still eat tums and Maylox? I sure do. Bye

for now. in Mo.

[Guest guest]

Karin...

That all sounds fabulous. I can't wait until I can join on the other side.

My husband suggested going for a walk today and I chickened out at the last

minute because I know I have a hard time keeping up with him. Hopefully soon

that won't be the case.

Jane

MGB 3/20/00

[Guest guest]

Karin...

That all sounds fabulous. I can't wait until I can join on the other side.

My husband suggested going for a walk today and I chickened out at the last

minute because I know I have a hard time keeping up with him. Hopefully soon

that won't be the case.

Jane

MGB 3/20/00

[Guest guest]

Thanks, Karin. I'm glad to know you're doing well. I'm a 24-26, too, and I

hope I have the same results you do. I can't imagine fitting into an 18 again.

Anne

Eby wrote:

>

>

[Guest guest]

Hey all !

Hope you and yours had a good 4th!

Got a question:

How many of you out there have your mito child/children in aerobic exercise?

How do they hold up?

What happens afterwards? Do they get weak, Vomiting ?

The reason I ask is 's Dr. wants to try her doing some aerobic exercise.

Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.

So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.

Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?

I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.

We have been there and it is horrible.

I dont want her just wasting away, but I dont want her to have to go through this all the time.

Please share your thoughts,

Thanks,

Horsley

leehorsley@...

[Guest guest]

..D.'s new therapist has been working well with him. He goes for about 5 minutes with light exercise like standing and catching a ball or walking over or on different shapes then sitting and resting for 5 minutes

Dr Cohen mentioned this several times at the conference. He said that try for 3 minutes the first day...then 3 min, 15 seconds the next week and build up...they also were really advocating Yoga as a good excercise for mito patients and even had a daily morning yoga session with an instructor until she broke her arm the last day...

I think there is even some research about this..c.an't remember if it is just excercise or yoga...does anyone else remember?

deb

[Guest guest]

In a message dated 7/5/02 7:32:58 AM Pacific Daylight Time,

leehorsley@... writes:

<< How many of you out there have your mito child/children in aerobic

exercise?

How do they hold up?

What happens afterwards? Do they get weak, Vomiting ?

>>

That's what happens to . Actually, first he gets a headache, then

tired, then if it keeps going, then he starts the vomiting. In any outside

temps above 75 to 78, it happens very quickly.

But, the point is, that I've worked with on listening to his body. He

used to just " go, go, go " until he would be vomiting. Now, he tells me when

the fatigue has started (and isn't easing up after normal easing up activity

a bit) and then uses the wheelchair (if we're on a family outing where

continued walking would be required) or lays down on the coach at home and

rests (or will sit down outside with friends, etc.).

This " listening to the body " is the hardest part. I struggle with it too.

If I do too much (like 2 trips into the city this past wkend), then I drag

for days afterwards....it's still hard for me to " get up and go " today from

those 2 trips into the city last wkend. It's also hard for others, because

they'll see , myself (or your for example) doing " fine " while

playing, but not realize the toll afterwards. But, I've had to learn myself

and teach to ignore what others think, listen to one's own body, and

pace accordingly. The result is that he's not as seemingly active as before,

but he's also not going to the ER for IV fluids from vomiting either!

Dena

[Guest guest]

Re: Exercise

Hey all !

Hope you and yours had a good 4th!

Got a question:

How many of you out there have your mito child/children in aerobic exercise?

How do they hold up?

What happens afterwards? Do they get weak, Vomiting ?

The reason I ask is 's Dr. wants to try her doing some aerobic exercise.

Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.

So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.

Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?

I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.

We have been there and it is horrible.

I dont want her just wasting away, but I dont want her to have to go through this all the time.

Please share your thoughts,

Thanks,

Horsley

leehorsley@...

Please contact mito-owner with any problems or questions.

[Guest guest]

Good Morning

Got too fast with the buttons. I can relate with the exercise. Some good news. J.D.'s new therapist has been working well with him. He goes for about 5 minutes with light exercise like standing and catching a ball or walking over or on different shapes then sitting and resting for 5 minutes. The 1st time he walked back to the car and was sick that following evening. Now I drive around to the back door for him to get in the car. We have not got the power chair but now we try to pace where J.D. doesn't have to use the wheelchair that much. The longer he can be kept mobile, the better.

The ortho dr had cast splints to where at nighttime for his legs. This was keeping him awake so now he has to where them during the day with resting, watching tv or on the computer.

With the 5 minute light therapy with intermittent rest, the cast splints and weight loss, I have seen positive results. He has become more mobile thus helping J.D. feel better about himself. Also, not having the stress of school is a factor. We try to use the summer time to work on the next year. We still have to remind him to rest whether he agrees or not. When he does come to the point of exhaustion, we explain to him when he has regained his energy his body language before he got to the weak point.

I saw the post regarding her "One Woman Show" and I thank that is wonderful and should boost her self esteem. There are certain things J.D. can cook. I want him as independent as possible.

Good Luck,

Darlene

Re: Exercise

Hey all !

Hope you and yours had a good 4th!

Got a question:

How many of you out there have your mito child/children in aerobic exercise?

How do they hold up?

What happens afterwards? Do they get weak, Vomiting ?

The reason I ask is 's Dr. wants to try her doing some aerobic exercise.

Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.

So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.

Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?

I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.

We have been there and it is horrible.

I dont want her just wasting away, but I dont want her to have to go through this all the time.

Please share your thoughts,

Thanks,

Horsley

leehorsley@...

Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Laurie for responding. Your newa about your son is encouraging! Horsley

Re: Exercise

Hey all !Hope you and yours had a good 4th!Got a question:How many of you out there have your mito child/children in aerobic exercise?How do they hold up?What happens afterwards? Do they get weak, Vomiting ?The reason I ask is 's Dr. wants to try her doing some aerobic exercise. Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.We have been there and it is horrible.I dont want her just wasting away, but I dont want her to have to go through this all the time.Please share your thoughts,Thanks, Horsleyleehorsley@...

[Guest guest]

Thanks Laurie for responding. Your newa about your son is encouraging! Horsley

Re: Exercise

Hey all !Hope you and yours had a good 4th!Got a question:How many of you out there have your mito child/children in aerobic exercise?How do they hold up?What happens afterwards? Do they get weak, Vomiting ?The reason I ask is 's Dr. wants to try her doing some aerobic exercise. Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.We have been there and it is horrible.I dont want her just wasting away, but I dont want her to have to go through this all the time.Please share your thoughts,Thanks, Horsleyleehorsley@...

[Guest guest]

Thanks Dena.

Horsley

Re: Exercise

<< How many of you out there have your mito child/children in aerobic exercise?How do they hold up?What happens afterwards? Do they get weak, Vomiting ? >>That's what happens to . Actually, first he gets a headache, then tired, then if it keeps going, then he starts the vomiting. In any outside temps above 75 to 78, it happens very quickly.But, the point is, that I've worked with on listening to his body. He used to just "go, go, go" until he would be vomiting. Now, he tells me when the fatigue has started (and isn't easing up after normal easing up activity a bit) and then uses the wheelchair (if we're on a family outing where continued walking would be required) or lays down on the coach at home and rests (or will sit down outside with friends, etc.). This "listening to the body" is the hardest part. I struggle with it too. If I do too much (like 2 trips into the city this past wkend), then I drag for days afterwards....it's still hard for me to "get up and go" today from those 2 trips into the city last wkend. It's also hard for others, because they'll see , myself (or your for example) doing "fine" while playing, but not realize the toll afterwards. But, I've had to learn myself and teach to ignore what others think, listen to one's own body, and pace accordingly. The result is that he's not as seemingly active as before, but he's also not going to the ER for IV fluids from vomiting either! DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

My son suffers from sudden onset muscle pain, and delayed onset muscle pain.

This is with exercise...which for him is walking... He says the Delayed Onset Pain is much worse. I think, and this is my opinion, that aerobic exercise would be to much, even if she is closley monitored. Maybe your Dr. wants her to keep her cardiovascular system in shape, but I'd weigh the risk to benifit ratio. I know there are other programs that seem to me would fit her better.

The Mobility specialist that comes to our house to evaluate said she wouls suggest a very light, short, water exercise program. 2 minutes maybe kicking...then 10 minutes rest etc... She said even though he is big 230lbs, and looks healthy, he needs to be on a very low taxing exercise program. She said she uses this particular program for eldrly people with severe repitory problems, because they fade as quickly as does. He can also do things like just lay on his back and I put a paper towel on his face and he tries to Blow it off his face. That is great exercise for his lungs, when he was younger he used to laugh so hard...he would end up crouping..

I'd think long and hard about your doctors advice, and see what everyone else has to say.

Goodluck,

Robin

[Guest guest]

From personal experience, exercise can be very helpful. My symptoms were too advanced to do much exercise, but I do ride a recumbent exercise bike without any resistance and only until I feel tired. My son is the one who has benefited the most. He was very symptomatic as a child (couldn't walk around the grocery store without stops to sit on the edge of the bottom shelf). He played in the pool a great deal during this time which seemed to help his muscles and his breathing. He did stop when he got tired and then would do something quiet. He is now 27 and has found that weight training is the best thing for him. He tried walking and this didn't work. He has a weight machine that he uses, but I would think that even ankle weights would work. He doesn't push himself, but tries to do it every other day. His exercise tolerance has improved so much that he hiked 36 miles in a week while in Alaska. He rested when needed, but this sure beats walking around the grocery store. He used a power wheelchair while in college. I know this isn't for everyone, but he is a good example that exercise does help some.

laurie

Reply-To: Mito

Date: Fri, 5 Jul 2002 09:28:29 -0000

To: <Mito >

Subject: Re: Exercise

Hey all !

Hope you and yours had a good 4th!

Got a question:

How many of you out there have your mito child/children in aerobic exercise?

How do they hold up?

What happens afterwards? Do they get weak, Vomiting ?

The reason I ask is 's Dr. wants to try her doing some aerobic exercise.

Ususally she plays and they rides her powerchair in the afternoon when her legs are hurting and weak.

So yesturday I told her no powerchair today. She had to walk no matter how hard it got. She was just here and at the neighbors house next door, not much distance at all.

Well last night she was in so much pain and she was nausiated and vomiting. So how much is to much and is it really worth it, and more over is it fare to her to have to go through this all the time?

I think if she did aerobic exercise we would be back to all the time vomiting and 4-5 days catching up again.

We have been there and it is horrible.

I dont want her just wasting away, but I dont want her to have to go through this all the time.

Please share your thoughts,

Thanks,

Horsley

leehorsley@...

[Guest guest]

Hey :

That's a tough one. My oldest son absolutely cannot do aerobic exercise. The youngest rides a horse and that gets his heart rate up pretty well.

My suggestions would be swimming! It can be paced at a level comfortably to ...she won't get overheated. Check your local YMCA/YWCA. Almost all have swimming lessons for kids with disabilities.

Both of my kids can swim and even though they get extreemely tired afterward, they don't feel sick or like they overextended themselves.

Carol

[Guest guest]

Hey :

That's a tough one. My oldest son absolutely cannot do aerobic exercise. The youngest rides a horse and that gets his heart rate up pretty well.

My suggestions would be swimming! It can be paced at a level comfortably to ...she won't get overheated. Check your local YMCA/YWCA. Almost all have swimming lessons for kids with disabilities.

Both of my kids can swim and even though they get extreemely tired afterward, they don't feel sick or like they overextended themselves.

Carol

[Guest guest]

Hey all,

I asked our metabolic doc about the exercise thing that was brought

up at the confrence.

[Guest guest]

Hey all,

I asked our metabolic doc about the exercise thing that was brought

up at the confrence.

[Guest guest]

I do believe any exercise should be done with supervision. Each person can exhibit different symptoms. When J.D. takes therapy, I watch the entire time. After prompting the therapists at first that when J.D.'s ear's turn red, dilated pupils, slurred speech, more clumsy and/or sneeze that it is time to back off. Also, I find if J.D. pushed himself for an hour, the exercise has a backlash effect but when he is active for like 5 minute intervals with rest then it has a more positive effect. Most people have the mind set that endurance can be built if you push for more time each time you exercise. I know at this time, we would not go to 10 minutes intervals but 5 minute intervals from 30 minutes to 45 minutes. Also, when J.D. is exercising with having fun it seems that when he doesn't think about exercising it has better effects.

Since mito effects everyone differently, I do believe any exercise should be done with the doctor involved. Posting can give ideas to present to the doctors.

Darlene

[Guest guest]

In a message dated 12/29/2003 5:12:42 PM Pacific Standard Time,

jclinton@... writes:

> and that

> increases at least 3 minutes a week.

again .. I love love love this idea Joan ... will apply it to my " step class "

.... which is so hard for me right now, the pivitol movements alone are the

challenge.. My knees are still too weak... or is my body rusty?? I can walk

forward ... no prob....but all of this other nonsense ...step to the side,

step to the back, step forward ...turn... lol... it makes me dizzy. I need to

work up to it I guess. Am moving as if I am an X-coma patient... risen from a

brain-dead state. Embarrassing. This is going to take some time to get used

to.

As you and ( was it Ruth?? ) and your Dr say .... " moderation is key " We

all have to start from where we are .... NOW ... and work up to a new level.

1/2 minute daily increases ... love it.

Skinny Wishes from Mandy in CA

275/147/126

[Guest guest]

The exercise idea of increasing 1/2 minute a day was from the weight clinic.

Never before had anyone said, just start with 5 minutes, then increase. The

docs said 30 minutes a day, that was it. 5 minutes seemed so obtainable it

was easy to start, and 30 seconds more doesn't seem a big deal, but it does

eventually get you to good, long exercise. I don't know I'd do any better

in a step class, but GOOD FOR YOU!!! I've heard it's tough.

It was Robin O. that has been so often said " moderation " is the key. I've

to keep these keys in my head, and make them part of me.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/241/140