Re: trouble walking

[Guest guest]

Carol

I found that my condition was much more stable after getting my scooter 11

years ago. I brought it up with my doctor who thought I was ready for it. I

started out using the scooters in the stores before this. I have found that

kids think the scooters as " cool " and walkers are for old people. Your son

might be accepting once you are able to do something he would like to do

that you are unable to do now. I was surprised that I had given up on so

many things, just to survive. Readiness is a personal thing, but if you are

at a point that you think that you would benefit from one, then you are

probably ready. Doctors want us to walk as long as we can, but I have

continued to be able to walk around the house and into restaurants because I

use a scooter (now a power chair).

laurie

> From: purplegromit@...

> Reply-To:

> Date: Tue, 1 Jun 2004 02:57:13 EDT

> To:

> Subject: trouble walking

>

> I saw my mito doc in April and she was surprised at the rate of my

> deterioration, including my walking. However she did not mention a wheelchair

> or

> scooter, etc.

>

> Tomorrow I go for a 24 hour EEG and Thurs, I meet with the doc who evaluated

> my earlier sleep study.

>

> I do no see her until October. To be honest....I have good days and bad days

> but the bad days are definitely more frequent. For many reasons, I am

> hesitant to push the difficulty walking thing. I have a 10 year old boy who

> would

> be devistated. I have a cane and a HUGO walker and he is quite embarassed

> when I use them.

>

> I also have to revisit the orthopedic doc who supposedly drained a huge cyst

> on my left knee. Although I followed his directions to the T, the cyst

> reappeared with a vegence. I am going to request another doc in the practice

> as the

> first doc had no bedside manner and was quite rude.

>

> How did each of you who are using assistive transportation come to that

> decision? Does your doc bring it up? When I go grocery shopping using a

> traditional cart, it takes me two hours plus and a day to recover.

>

> Any suggestions would be welcome!

>

> Thanks!

>

> Carol

>

>

>

[Guest guest]

Although I have been slow to use the scooter that I have had for 5 years now and

the power chair which I've had 2 1/2 years - these were suggested to me by my

PCP and the MDA doctor I saw and I found that I knew when it was necessary to

make the move to use them.

I think it's a good idea to try to stay as ambulatory as possible but like

everything else in Mito, you need to listen to your body and when it cries out

for help, you have to listen.

Today, I don't know what I would do without my equipment.

Alice

[Guest guest]

I second that Alice and Laurie. I couldn't be doing even a fraction of the

things I do without my chair. I am finding that I now need to use my

scooter as a means to get around the yard to work in the garden. I still

walk a little in the house but that is very short distances. I have had a

scooter for a bit more than 10 years and a chair which I now use everywhere

I go away from home, for the last 2 years. When I first started with it, it

was for things that kept me on my feet 10 or more minutes so I have seen

progressive deterioration of being able to walk and stand from 10 minutes to

just a few seconds. However I make sure that I keep my body exercised and

get to the pool 3 times a week for lap swimming and full range of motion

exercises. People have commented on how agile I am, and I attribute that to

exercise that I push to my limits and a tad beyond. Even though my muscles

are getting less dependable, I want to make sure that my range stays as

broad as possible. If I were to push walking in place of using my chair,

that would end up being all that I could do. I've tried that and watched my

activity level go down the drain, while experiencing multiple crashes a

month. Knowing our limits, trading walking for the best exercise we can

get without crashing, keeping up our independence and activity (not

necessarily physical) level as high is possible seems to be the healthiest

way to fight this disease. I attribute a wise MDA doctor and PT/OT team

that took the time to help me learn how to balance my energy bank so that I

wouldn't end up with a negative balance as often. It isn't how normal we

appear, but rather how efficiently we can function daily, weekly and

monthly. It is hard to make the move to the scooter and then the chair. I

can remember the first days of using both, and now they seem like a part of

me, both to me and everyone around me. Kids seem to like having an adult

that is at their level height wise and I am surprised how many of the talk

to me when I am out in the community. Cheers, Ruth

_____

From: justagram@...

Sent: Tuesday, June 01, 2004 9:35 AM

To:

Subject: Re: trouble walking

Although I have been slow to use the scooter that I have had for 5 years now

and the power chair which I've had 2 1/2 years - these were suggested to me

by my PCP and the MDA doctor I saw and I found that I knew when it was

necessary to make the move to use them.

I think it's a good idea to try to stay as ambulatory as possible but like

everything else in Mito, you need to listen to your body and when it cries

out for help, you have to listen.

Today, I don't know what I would do without my equipment.

Alice

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.