When did you got MSA and how old are you?

[Guest guest]

Timo,

My mama Loretta is now 55 yrs old as of 11/14/2001. Her 1st symptoms

occured 12/97 and she was dx 06/98. She sees a wonderful Doc at Wake Forest

Baptist Hospital in Winston-Salem, NC. (Francis , MD Neurologist).

If your wife is exp. a little depression ask her and her Doc about Celexa. I

saw a big change in my mama after this! Even the Doc comforted her about

trying this ant-depressant. It seemed as if just 1 day she started having

little crys or her eyes would tear up at nothing! So this was just a little

boost! Plus I smother her with love, care, and lots of humor! I hope she is

OK. I still cannot believe after all these years that my mom contracted this!

Take Care,

Amy DeBusk (debuskbunch@...)

North Carolina

[Guest guest]

Terry was 66 when first Dxed with PD; now it is MSA/SND. It is now clear

that she has had a big problem with apathy - not depression - for many

years - maybe even before her first Dx. Apathy is a frequently

unrecognized symptom of MSA.

Message: 22

Date: Sun, 30 Dec 2001 00:54:21 +0100

Subject: When did you got MSA and how old are you?

Hello group,

my wife Anne is getting depressed about her illness, probably because she

seems to be less mobile. Her biggest concern is that she finds she is much too

young to have this horrible disease. Did anyone kept on file at what age our

members are and when first symptons did occur?

For the record, Anne is now 45 y/o and first symptons occured 8 years ago,

balance and fatigue.

Timo

Sennewald Charlottesville, Virginia

[Guest guest]

I'm 45, I'll be 46 in February. I do understand the depression. It is so frustrating at times. I've been battling depression since I was 30, and now I finally understand why. I have dystonia in my back muscles, plus parkinsons.I've had many surgeries and in and out of the hospital in the last 10 years. I'm a colon cancer survivor, it been now 4 years since cancer. It is so hard to explain to family menbers how much pain I live with day to day. When the pain is out of control I will give myself a demerol shot. This usually about once a month. I'm on so many meds, for Pd.,Dystonia,depression, and pain plus muscle relaxants. As you see no matter how much we like to know why our bodies are the way they are even the doctors can't give you a straight answer.

I take one day at a time , take the good with the bad. There has to be someday where we can take 1 pill to cure all. ok!!!I'm dreaming.

Bonnie(Calgary,Alberta,Canada)

bonniecurlew@...

>From: "Timo"

>Reply-To: shydrager >To:

>Subject: When did you got MSA and how old are you? >Date: Sun, 30 Dec 2001 00:54:21 +0100 > >Hello group, > >my wife Anne is getting depressed about her illness, probably because she >seems to be less mobile. Her biggest concern is that she finds she is much too >young to have this horrible disease. Did anyone kept on file at what age our >members are and when first symptons did occur? >For the record, Anne is now 45 y/o and first symptons occured 8 years ago, >balance and fatigue. > > >Timo > Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Timo,

I think the youngest on record (that I remember) is 32 at diagnoses

and I don't remember at onset of symptoms. We have several members

under 40 such as Haigh tand Tim. I also remember that several

of the women are younger, but don't remember which ones. I know that

Anne in Australia and Harriet in Hawaii were diagnosed young (Anne before

40). It is not common, but it is certainly not uncommon either.

Charlotte had fatigue and stumbling probably as early as 46 or 47. Diagnosed

at 51. She died at 62. Try to keep her doing the exercises,

remember the MSA motto:

Use it or Lose it!

Take care, Bill

Timo wrote:

Hello

group,

my wife Anne is getting depressed

about her illness, probably because she

seems to be less mobile.

Her biggest concern is that she finds she is much too

young to have this horrible

disease. Did anyone kept on file at what age our

members are and when first

symptons did occur?

For the record, Anne is

now 45 y/o and first symptons occured 8 years ago,

balance and fatigue.

Timo

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

My mother Joyce started showing clear symptoms when she was around 66 (although I detected something wrong with her voice a good 2 years before that). She was diagnosed a year later with PD, then MSA.. She just turned 71 when she died. Debbie

[Guest guest]

hi! this message is to bill. I know the past years have been difficult. I

lost my mom to msa last Jan. Thanks for all of the helpful information throughout the years. Although i don't write much i always read this newsletter and try to keep up with the latest updates. Have a happy and healthy new year and I believe that my mom and Charlotte are in a better place now.

Ann from NY

[Guest guest]

Hi Timo,

My symtoms started when I was 31, and I just got a dx this past

March(I'm 37 now). My main problem is with my BP, but meds help.

Take care,

Rita

[Guest guest]

Hi Timo,

My symtoms started when I was 31, and I just got a dx this past

March(I'm 37 now). My main problem is with my BP, but meds help.

Take care,

Rita

[Guest guest]

Hi Timo,

My symtoms started when I was 31, and I just got a dx this past

March(I'm 37 now). My main problem is with my BP, but meds help.

Take care,

Rita

[Guest guest]

Greetings Timo!

I think I first started to have some symptoms appear in my mid 30s. But the problems with balance and other issues did not start until about three years ago. My wife and I have been married almost 23 years at this point. We have two children (still at home). Ditto here ... balance and fatigue and ... Well, you know the litany

Yes, it is overwhelming and depressing. Might I suggest a two pronged approach. First, I suggest that you and she discuss this with her doctors. There is some indication that resulting depression is both situational (her current situation IS overwhelming for her) and biological (the brain may not be producing enough neuro-transmitters .. thus making depression quite likely).

Second, your wife needs to find someone to whom she can bare her soul. Some churches / synagogues offer this as a service to their communities. A therapist is another option. The most important thing is to find someone that will just LISTEN. Not talk. Not try to fix the situation. Just LISTEN. Sometimes the act of talking things through leads to answers. Sometimes it leads to acceptance. But always it leads to a healthier response to the situation.

Anyway, just a couple for thoughts from a fellow Sojourner along this particular Journey.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings Timo!

I think I first started to have some symptoms appear in my mid 30s. But the problems with balance and other issues did not start until about three years ago. My wife and I have been married almost 23 years at this point. We have two children (still at home). Ditto here ... balance and fatigue and ... Well, you know the litany

Yes, it is overwhelming and depressing. Might I suggest a two pronged approach. First, I suggest that you and she discuss this with her doctors. There is some indication that resulting depression is both situational (her current situation IS overwhelming for her) and biological (the brain may not be producing enough neuro-transmitters .. thus making depression quite likely).

Second, your wife needs to find someone to whom she can bare her soul. Some churches / synagogues offer this as a service to their communities. A therapist is another option. The most important thing is to find someone that will just LISTEN. Not talk. Not try to fix the situation. Just LISTEN. Sometimes the act of talking things through leads to answers. Sometimes it leads to acceptance. But always it leads to a healthier response to the situation.

Anyway, just a couple for thoughts from a fellow Sojourner along this particular Journey.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings Timo!

I think I first started to have some symptoms appear in my mid 30s. But the problems with balance and other issues did not start until about three years ago. My wife and I have been married almost 23 years at this point. We have two children (still at home). Ditto here ... balance and fatigue and ... Well, you know the litany

Yes, it is overwhelming and depressing. Might I suggest a two pronged approach. First, I suggest that you and she discuss this with her doctors. There is some indication that resulting depression is both situational (her current situation IS overwhelming for her) and biological (the brain may not be producing enough neuro-transmitters .. thus making depression quite likely).

Second, your wife needs to find someone to whom she can bare her soul. Some churches / synagogues offer this as a service to their communities. A therapist is another option. The most important thing is to find someone that will just LISTEN. Not talk. Not try to fix the situation. Just LISTEN. Sometimes the act of talking things through leads to answers. Sometimes it leads to acceptance. But always it leads to a healthier response to the situation.

Anyway, just a couple for thoughts from a fellow Sojourner along this particular Journey.

Regards,

=jbf=

B. Fisher

[Guest guest]

Timo,

Counseling can help you too. I got my wife to go with me and (surprise)

the grief counseling helped both of us. That is one reason I am able to

cope with her death as well as I have - I knew in advance the stages of

grief and how to cope. It's okay to do some of the stages in advance

and can help you now too.

One big help was handling the guilt phase! We all do feel guilty at

times (both patients and caregivers) and knowing how to cope with this

phase can be a lifesaver.

Take care, Bill

==========================================

" B. Fisher " wrote:

[Guest guest]

HI I AM RESPODING TO YOUR E-MAIL BECAUSE MY MOM WAS DIAGNOISED WITH MSA IN MARCH OF LAST YEAR BUT WAS TOLD SHE HAD PARKINSON'S IN DEC OF 99. SHE IS 56 AND IS ALMOST TOTALLY BEDRIDDEN, BUT STILL STAYS AS MOBILE AS SHE CAN. IM TRYING TO FIND SOMEONE WHO IS GOING THROUGH THE SAME ILLNESS AS HER AND CAN TALK WITH HER. WE NEED A SUPPORT GROUP BADLY!!!!!!! PLEASE LET ME KNOW IF YOU CAN HELP US WE ARE NEAR COLUMBUS, OHIO MELISSA

[Guest guest]

THANKYOU FOR SENDING ME A E-MAIL BACK MY MOM'S NAME IS BILLIE DO YOU HAPPEN TO LIVE NEAR COLUMBUS? SHE CAN BARELY SPEAK AND SHE ALSO USES A WHEELCHAIR WITH A DEVICE THAT HOLDS HER HEAD BA CK BUT SHE WONT WEAR IT BECAUSE OF HEADACHES, SHE HAS DYSTONIA ALSO AND ORTHOSTATIC HYPERTENSION AS YOU MENTIONED. DO YOU TAKE ANY MEDS FOR BLOOD PRESSURE? MY MOM HAS LOST A LOT OF WEIGHT TOO AND HAS ALOT OF SALIVA IN HER THROAT I HOPE YOU ARE DOING OK AND I PRAY EVERY DAY FOR A CURE FOR THIS AWFUL ILLNESS!!!!!MY MOM IS MY BEST FRIEND.

[Guest guest]

- My husband has SDS and we live in Grove City, a neighboring suburb

to Columbus. I used to hold support group meetings at my house, but the

original people attending aren't able to do so right now for various reasons

-- but there are a couple of new people who might be interested in attending

if we started them up again. How near to Columbus do you live? Would be glad

to meet with you at some point, or talk on the phone as well as converse via

this email list. My phone # is . I work during the week, but

anytime on weekends or between 8-10 p.m. weekdays I'm usually home. Would

love to meet you. Judy (Ned) B.

[Guest guest]

Hi. I hope I can help. I'm 54, diagnosed with Parkinson's in December of

99 and MSA (SHY-DRAGER) about April of 2000.

I'm confined to a wheelchair and can barely speak, I type with one finger

(used to type 100 wpm) I list to the left a great deal. Have very low B/P

when standing and as much as 236/113 when reclining plus no balance.

Re: When did you got MSA and how old are you?

<< File: ATT00019.html >> HI I AM RESPODING TO YOUR E-MAIL BECAUSE MY MOM

WAS DIAGNOISED WITH MSA IN

MARCH OF LAST YEAR BUT WAS TOLD SHE HAD PARKINSON'S IN DEC OF 99. SHE IS

56

AND IS ALMOST TOTALLY BEDRIDDEN, BUT STILL STAYS AS MOBILE AS SHE CAN. IM

TRYING TO FIND SOMEONE WHO IS GOING THROUGH THE SAME ILLNESS AS HER AND CAN

TALK WITH HER. WE NEED A SUPPORT GROUP BADLY!!!!!!! PLEASE LET ME KNOW IF

YOU CAN HELP US WE ARE NEAR COLUMBUS, OHIO MELISSA

[Guest guest]

Hi ,

You came to the right place. I personally cannot help you by phone, because of the veeeeery long distancecalls we would make. On the list we got several well informed members who got knowledge I think I would never gather. Surely you will find answers with Bill, , Pam and the others. Wishing you the best you can get.

Timo

The Netherlands

Re: When did you got MSA and how old are you?

HI I AM RESPODING TO YOUR E-MAIL BECAUSE MY MOM WAS DIAGNOISED WITH MSA IN MARCH OF LAST YEAR BUT WAS TOLD SHE HAD PARKINSON'S IN DEC OF 99. SHE IS 56 AND IS ALMOST TOTALLY BEDRIDDEN, BUT STILL STAYS AS MOBILE AS SHE CAN. IM TRYING TO FIND SOMEONE WHO IS GOING THROUGH THE SAME ILLNESS AS HER AND CAN TALK WITH HER. WE NEED A SUPPORT GROUP BADLY!!!!!!! PLEASE LET ME KNOW IF YOU CAN HELP US WE ARE NEAR COLUMBUS, OHIO MELISSA If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

My name is sheriilyn sherry by ii have gone by sherry so when I married I

became sherry sherry. I live in Louisville Ky. I take 1 proamatine in

the morning for my blood pressure. I don't have the head drop yet but am

aware that a lot of people do. Yes I also have excess saliva too/I'm

sorry, but a conversation would be very hard. I'll ask my husband if he

would try to intervene

Re: When did you got MSA and how old are you?

<< File: ATT00021.html >> THANKYOU FOR SENDING ME A E-MAIL BACK MY

MOM'S NAME IS BILLIE DO YOU

HAPPEN TO LIVE NEAR COLUMBUS? SHE CAN BARELY SPEAK AND SHE ALSO USES A

WHEELCHAIR WITH A DEVICE THAT HOLDS HER HEAD BA CK BUT SHE WONT WEAR IT

BECAUSE OF HEADACHES, SHE HAS DYSTONIA ALSO AND ORTHOSTATIC HYPERTENSION AS

YOU MENTIONED. DO YOU TAKE ANY MEDS FOR BLOOD PRESSURE? MY MOM HAS LOST A

LOT OF WEIGHT TOO AND HAS ALOT OF SALIVA IN HER THROAT I HOPE YOU ARE

DOING

OK AND I PRAY EVERY DAY FOR A CURE FOR THIS AWFUL ILLNESS!!!!!MY MOM IS MY

BEST FRIEND.