Kaarina from Finland is back

[Guest guest]

Hello, some of you probably remember me though it's quite long since

I wrote. Now the mito research team (Biomedicum center) is verifying

my dna with the results all over the world. In the meantime my

neurology was diagnosed Parkinson-diseace and my new doc did not

believe I had mito. She told me later that she actually had the

tests from biopsy redone. That was why she did not want to see me

physically, just called me. I told everyone that my new doc treats

me by the phone. I even told this to a mito specialist from another

university in Finland and he told me not to believe in such

treatment. I told him I do not believe but my doc seems to believe.

Finally she did arrange to see me last fall and told me about her

doubts and she also told me that she received remark from the prof.

to whome I told about the phone treatments. This is in Helsinki

University Hospital where they have the Muscular Diseace Clinic. My

mito seems to be quite rare type as no mach has been found.

In the meantime as my ptosis got worse the both lids were operated:

the better one first last spring. What a relief...

As we pay health insurance from all our salaries (not voluntary) I

paid just about $80,- for each operation.

Are there some of my old friends. Kaarina

[Guest guest]

Kaarina

Welcome back. It is nice hearing from you.

I'm sorry you have been dealing with such frustration.

My mito was not diagnosed with several frozen biopsies. I traveled

several thousand miles to a mito center that did fresh biopsies and

the immediate evaluation for the function of the different complexes.

This showed a complete absence of function at complex I. Have you had

this kind of biopsy?

I'm glad the eye surgery went well. How are you feeling otherwise.

laurie

> Hello, some of you probably remember me though it's quite long since

> I wrote. Now the mito research team (Biomedicum center) is verifying

> my dna with the results all over the world. In the meantime my

> neurology was diagnosed Parkinson-diseace and my new doc did not

> believe I had mito. She told me later that she actually had the

> tests from biopsy redone. That was why she did not want to see me

> physically, just called me. I told everyone that my new doc treats

> me by the phone. I even told this to a mito specialist from another

> university in Finland and he told me not to believe in such

> treatment. I told him I do not believe but my doc seems to believe.

> Finally she did arrange to see me last fall and told me about her

> doubts and she also told me that she received remark from the prof.

> to whome I told about the phone treatments. This is in Helsinki

> University Hospital where they have the Muscular Diseace Clinic. My

> mito seems to be quite rare type as no mach has been found.

> In the meantime as my ptosis got worse the both lids were operated:

> the better one first last spring. What a relief...

> As we pay health insurance from all our salaries (not voluntary) I

> paid just about $80,- for each operation.

> Are there some of my old friends. Kaarina

>

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>

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>

>

> 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.

>

>

>

>

>

>

[Guest guest]

Hi Laurie, nice to hear from you. I am otherwise feeling as fine as

can be expected. When I was diagnosed mito 2000 I was told to do

some excersises sitting in a chair, now it is told that aerobics

increases your mitochondria. Two years ago I was asked to join

Parkinson-gym group: once a weej gym and once watergymnastics. I fit

perfectly to this group. There is one ataxia-patient also and the

fysiotherapist-trainer is the one who has been taking care of my

problems. This makes everything easier, as she sees me twice a week

and I can ask straight away if I have some acute problems. I

remember you all the time as I usually wear the High Hopes-t-shirt

to gym.

I was invited to a mito-patient weekend meeting (3 times) and I met

8 other mitopatients. The prof.of neurology told us that the common

knowledge is that mito is rare in Finland but he is trying to prove

otherwise: the patients are just false diagnosed. I still walk on my

own (inside without help) outside walking stick, no swallowing

difficulties. Just have difficulties in remembering words and with

my sight and of course the lack of strenght. The best thing is that

Nordic Walking was invented in Finland. It's like skiing but you

just have the ski poles and walk. And everybody is doing this in

Finland. As it is icy they help a lot. Actually I wasn't using a

walking stick just these poles and went to a department store in

Helsinki with them. I told about this to my fys.dr. and she told me

now it is time to start using the walking stick when necessary.

We still have snow and it is quite cold to the time of year -8...+0.

Next weekend some snow is promised. How are you? Kaarina

> 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.

> >

> >

> >

> >

> >

> >

[Guest guest]

Kaarina

I'm glad you still have your mito shirt. I will be glad when it warms

up and I can start wearing mine again.

It sounds like you are holding your own for the most part.

I had to stop working a year ago and have added problems all the time

or at least it seems that way. I think age is entering into the

equation at this point. I think it was a good time to stop working

even though it was hard and I miss the people and students. I recently

started volunteering at our local hospital once a week for 3-4 hours.

I am also making hats and booties for the newborns. Family issues have

been a real stress. My oldest brother (15 months younger than me) has

an anyerism above his heart and has cancer of the lymph glands and

blood. My other brother (younger yet) is surviving, but his wife had

several months of chemo after a masectomy and the cancer came back

after month. She is undergoing both chemo and radiation. His oldest

daughter is in the hospital with ulcerative colitis. He is working two

jobs and trying to take care of his wife and granddaughter. I am

concerned about him. My sister , who has confirmed mito, is on

the list as you probably remember and she has developed new problems.

Our dad has been in and out of the hospital and is now in a nursing

home. My oldest son got married in Aug, so I now have 2 wonderful sons

and 2 wonderful daughter-in-laws. I think that is about it from this

US house.

laurie

> Hi Laurie, nice to hear from you. I am otherwise feeling as fine as

> can be expected. When I was diagnosed mito 2000 I was told to do

> some excersises sitting in a chair, now it is told that aerobics

> increases your mitochondria. Two years ago I was asked to join

> Parkinson-gym group: once a weej gym and once watergymnastics. I fit

> perfectly to this group. There is one ataxia-patient also and the

> fysiotherapist-trainer is the one who has been taking care of my

> problems. This makes everything easier, as she sees me twice a week

> and I can ask straight away if I have some acute problems. I

> remember you all the time as I usually wear the High Hopes-t-shirt

> to gym.

> I was invited to a mito-patient weekend meeting (3 times) and I met

> 8 other mitopatients. The prof.of neurology told us that the common

> knowledge is that mito is rare in Finland but he is trying to prove

> otherwise: the patients are just false diagnosed. I still walk on my

> own (inside without help) outside walking stick, no swallowing

> difficulties. Just have difficulties in remembering words and with

> my sight and of course the lack of strenght. The best thing is that

> Nordic Walking was invented in Finland. It's like skiing but you

> just have the ski poles and walk. And everybody is doing this in

> Finland. As it is icy they help a lot. Actually I wasn't using a

> walking stick just these poles and went to a department store in

> Helsinki with them. I told about this to my fys.dr. and she told me

> now it is time to start using the walking stick when necessary.

> We still have snow and it is quite cold to the time of year -8...+0.

> Next weekend some snow is promised. How are you? Kaarina

>

>

>

>

>

> > 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.

> > >

> > >

> > >

> > >

> > >

> > >