The Mask

[Guest guest]

Hi all,

The mask look is normal for MSA, but it is caused by a lack of muscle control

rather than apathy. Apathy is probably another symptom of MSA as said,

as is depression. Anyone who starts losing all muscle control must get

depressed, I would! Yes the patient needs to fight all the symptoms of MSA as

well as possible. Things we tried with Charlotte seemed to help follow.

Patients must exercise the mind as well as the body to fight apathy and

depression. Charlotte learned to use the computer at about the age of 55, four

years after being diagnosed as PD - while still working. Later she played card

games like hearts and solitaire on the computer, this exercised her mind and

eye - hand coordination. Some studies have been mentioned about doing mazes to

help balance, this is exercising the brain and certainly can not hurt. Do your

exercises (especially speech) while watching yourself in a mirror and work on

getting expression in your face while speaking.

Caregivers, remind your patients that they need to do their exercises and work

with them as much as possible. Get the patients outdoors as much as possible,

this helps with the fight against depression. Try to get friends to visit more

often, I know this is a chore as friends want to avoid you as they do not know

what to say to you. Charlotte and I made some of our best friends here on the

list. Group meetings DO help, Charlotte was greatly improved after her first

visit with the Moller's in 1999. We tried to get to the Zoo several times a

year especially spring and fall. Museums are a place to go in rainy or

inclement weather, especially with family. Malls offer another place for

seeing people and just getting out of the house when the weather is bad.

Social gatherings at church are good and may help get people to interact with

both the caregiver and patient, especially for those in small rural areas.

Social contact ALWAYS helped Charlotte's spirits. Even if it tired her out,

she was happier after a day at our daughter's. I am sure she had a great time

on Thanksgiving Day seeing the whole family, even if it was the last full day

of her life.

The Oregon support group started with picnic like meetings in a park and we of

the DC group at considering a picnic this spring. We are going to push for

children and grandchildren to be there too as we can all support each other.

Since Charlotte's death I have seen that my natural daughter never really faced

the fact that Charlotte would ever die, after all she made it through several

crises periods before. Learn from my experience and involve the kids more.

Just warning them that there is always a chance of death everyday is not

enough. Remember that teens always believe they can live forever, and we all

know that anyone of us can die anytime.

and Rose travel over 100 miles to attend a support group meeting with the

DC group. This helps them get social interaction with others in the same

situation, but remember that there are many other diseases and disorders that

have some or all of the same problems. I see the same questions on the CBGD

list as I see here and know that MS and ALS patients have many of the same

problems as us. And they all feel as isolated as MSA patients/caregivers feel.

Take care and remember our motto " Use it or lose it "

Hugs, Bill Werre