Re: hello from a new member

Posted July 28, 2005 · July 28, 2005

Welcome to the group. I am glad you found this group. It was started

for just the reason you stated.

Many of us have had to have accomodations for work or had to stop

working due to our mito. I am one who can still walk short distances

inside the house (from chair to chair), but needs a power wheelchair

outside my home, so I understand your issues. Please ask any questions

you have. One or more of us will answer as we can.

laurie

> Hello, my name is ... I am still in the throes of final

> diagnosis, but it is apparently mild rheumatoid arthritis overlap with

> mitochondrial myopathy. For me it has been adult onset, with a slow

> progression.

>

> Now in my forties, i use assistive devices for any distance

> travelling, and use arm crutches for stability for short distances. I

> have a fair amount of muscle pain but medication is handling it, along

> with yoga and water therapy.

>

> I love the idea of an adult only list! I have been totally reluctant

> to post in other lists, as the people there are consumed (rightly!)

> with the urgent needs of their little ones ...

>

> I am luckily a software suport person with a computer company, and

> work from my home although i do travel occasionally (both by car and

> flying). I have found it frustrating to get assistance, advice and

> support when one has the ability to walk still but cannot walk any

> distance at all, seems everyone expects one to be either able or

> wheelchair bound! My life demands that i keep up with the world, and i

> feel sometimes i am reinventing the wheel as i struggle to make good

> choices with equipment and choices about when to just " do something "

> and when to say " i cannot " ...

>

> To complete the " bio " (forgive its length) i am married with 2

> children (aged 9 and 12 and healthy, thank goodness) ...

>

> thank you for listening

>

> 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.

>

Posted July 29, 2005 · July 29, 2005

,

Hi! Welcome to the group. I think you will find a lot of caring

people here. I am also one who can walk short distances with my walker

or arm crutches, but I do need the wheelchair for longer distances. I am

needing the wheelchair more lately. I am still working, but had to

really change my hours, from a full time special ed teacher to a 2 1/2

hour a day reading associate. That may also have to change. There are

many various accommodations that we have all had to make. Please ask any

questions that you have. Also, I am sure you have many accommodations

that you have had to make that might be useful to others!

Smiles,

a

On Thu, 28 Jul 2005 15:40:17 -0000 " rdrotos " rdrotos@...> writes:

Hello, my name is ... I am still in the throes of final

diagnosis, but it is apparently mild rheumatoid arthritis overlap with

mitochondrial myopathy. For me it has been adult onset, with a slow

progression.

Now in my forties, i use assistive devices for any distance

travelling, and use arm crutches for stability for short distances. I

have a fair amount of muscle pain but medication is handling it, along

with yoga and water therapy.

I love the idea of an adult only list! I have been totally reluctant

to post in other lists, as the people there are consumed (rightly!)

with the urgent needs of their little ones ...

I am luckily a software suport person with a computer company, and

work from my home although i do travel occasionally (both by car and

flying). I have found it frustrating to get assistance, advice and

support when one has the ability to walk still but cannot walk any

distance at all, seems everyone expects one to be either able or

wheelchair bound! My life demands that i keep up with the world, and i

feel sometimes i am reinventing the wheel as i struggle to make good

choices with equipment and choices about when to just " do something "

and when to say " i cannot " ...

To complete the " bio " (forgive its length) i am married with 2

children (aged 9 and 12 and healthy, thank goodness) ...

thank you for listening

Posted July 30, 2005 · July 30, 2005

Hi , my name is Dolores and I am a 69 year old widow who raised

two sons and a foster-daughter. I lost my youngest son August 25, 2004 at

2:15 am with me by his side, in the same hospital he was born in. I was

mis-diagnosed with Parkinsons in 2001 and December of last year my orthopaedic

doctor of over 30 years called me to tell me he had proof that I had a

Mitochondrial Dysfunction and not Parkinsons (he never did believe I had

Parkinsons). Due to the loss of my son I was going home to Washington State

with my cousin and her husband for the holidays, so I told Dr. Baker it was all

up to him and have fun. He " fired " my previous neurologist, started consulting

with my current neuro and it has sort of been downhill since then. I became ill

and was hospitalized recently and the testing that was ordered showed something

that must be encouraging as the MDA clinic at KU in Kansas City, MO has accepted

Dr. Weslch's referral for me to go thru their clinic for a more

definitive diagnosis. My neurosurgeon feels that I have a Mitochondrial

Myopathy but perhaps I will find out something eventually now. My condition

improved greatly after all the Parkinsons meds were pulled and I was put only on

Neurotin for peripheral neuropathy in both legs. I get around with the aide of

a cane but I am only able to go short distances due to severe neuromuscular

damage to my right leg. I also have degenerative scoliosis of the spine as well

as two brain tumors that were treated by Gamma Knife at Research Hospital in

Kansas City. Fortunately this was prior to losing my husband in January of

2002. I worked until February 2004 and then had to go out on short term

disability. This last month I had a mild stroke, a light heart attack and lost

over two hours due to a " silent seizure " . I was addressing an envelope and he

next thing I knew it was over two hours later than when I sat down. the

envelope was still in my left hand and the pen still in my right hand,

but the hamburger I sat out to unthaw had bled all over my counter and went

into the disposal. After I came home from the hospital I developed pneumonia

and I think I am finally getting back some strength. I was still recovering

from a colon biopsy I had done on June 23rd when all this other popped up. They

put in a couple of stents and if it weren't for my leg I might be as good as new

but it holds me back. I do hope you will get a positive diagnosis and all will

go well for you. i will keep you in my thoughts and prayers. God Bless,

Dolores

rdrotos rdrotos@...> wrote:Hello, my name is ... I am still in the

throes of final