Multiple System Atrophy (MSA) Awareness Month
We are so thankful for so many people sharing the world of Multiple System Atrophy (MSA). Vera James, who's husband Fred passed away from the disease in 2003, offers help and support on an MSA Hotline in her home, 24/7. Currently a MSA Coalition board member, Vera takes on many jobs, including helping with memorial envelopes, assisting with conference set up, and ultimately providing assurance and understanding to those who call into the MSA Hotline.
“I get to be a lifeline, helping to take away fear with information,” she says. “Most first-time calls are from newly diagnosed patients or caregivers whose loved one has just been diagnosed. Then they call back whenever they need more information about equipment, speech therapy and what to do for this and that. What’s most common among the callers is the love that drives them to make things better and the determination to keep going. On a few occasions, the caller has been just really down at the moment and says, ‘You don’t know what it’s like.’ I assure them that I do know what it’s like, telling them, ‘I’ve been there’.”
Vera's granddaughter, Hannah, and her friend Aiden, recently completed a school project depicting the facts of MSA on purple dragonflies, including:
1. Rare Neurological Disorder 4 in 100,000
2. M - Multiple (Many parts of the brain)
S - System (brain structures that control function)
A - Atrophy (Cell Shrinkage or damage)
3. Why brain cells become damage is unknown. By time of diagnosis 150,000 cells are damaged
4. It doesn't appear to be inherited
5. There are two types: MSA-P & MSA-C
6. Usually starts between age 50-60 years
7. MSA is difficult to diagnose
8. It is common for many with MSA to be misdiagnosed with Parkinson at first.
9. Because MSA is rare, many doctors are unaware of the disorder & will never see a case
10. There is no cure
11. Everyone with MSA experiences deterioration prior to death
12. Most are in a wheelchair by the fifth year of diagnosis
13. Common symptoms: loss of balance, slurred speech & fainting
14. The disorder tends to advance rapidly within 6 to 10 years
15. They may acted out their dreams while asleep.
With MSA Month coming to an end, please take a minute to reflect on the information shared above, the affect on the individuals that have this horrible disease, and their families. If you can, please donate to a very good cause.
