Hi There

[Guest guest]

Greetings to all! I am a newbie to your group and after reading

Bill's sentimental posting about losing old friends, I had to say

HELLO! I met some wonderful people on Sunday at the support group

meeting in land. The information I gained from this group in just

a couple hours is amazing. I'm not very good at chatting, but I

promise to contribute my opinion now and then……

In August, the good doctors at town University figured out I

didn't have a stroke but instead Parkinson Plus MSA. Sinemet didn't

change anything for me and the doctors there weren't PD/MSA

specialists. I've been floundering around with this diagnosis for a

while, no doctor, and no treatment. Just bummed out. So, I searched

the Internet and read everything printed about PD/MSA. I found you

guys! Today I am going to see a Neurologist/Movement Disorder/MSA

Specialist: ne Goldstein in Columbia, MD.

I'm not too bad off for being 47. But, I can't believe how slow I

move, how tired I get, and my speech is really slurred and weak

sounding. So maybe a new doc and new meds will be an improvement.

Thank you all for being around.

Take good care,

Jo

Greenbelt MD

[Guest guest]

Greetings Jo !

You mention:

> I'm not too bad off for being 47. But, I can't believe how slow

> I move, how tired I get, and my speech is really slurred and

> weak sounding. So maybe a new doc and new meds will be

> an improvement.

I am 46, with two teenagers, so understand how you might feel in your

situation. I have the Sporadic OPCA form, rather than the Parkinsons Plus

form. But as you've learned, any form of this involves symptom management.

Might I suggest a couple points? First, rest seems to be very important

with MSA. A mid-day nap, if at all possible, is extremely important. Rapid

energy depletion seems to be common. Second, if you are working, be certain

to enroll for Long Term Disability and Home Health Care, if either are

offered by your employer. Third, be certain to request a speech therapist,

who can help you learn the Lee Silverman Technique (LST). Thsi was designed

for Parkinsons patients to help reduce slurred and weak speech. Even though

I have Speech and Theater training, I sometimes need to concentrate to speak

clearly. Finally, start to think through any final arrangements ... it is

easier to do that now, than later.

But most importantly - share your concerns and frustrations. It is so very

important to do that. Only by sharing the load does it become more

bearable.

Regards,

=jbf=

B. Fisher