Author: Shannon Dunphy Lazo, NAF Support Group Leader
Our June 8th meeting was held at the Center for Advanced Medicine. Melinda McAliney, our guest speaker, started us off. She introduced herself and explained her goals. Melinda is from Vario Philanthropy, and she wants to explore our support group and provide suggestions/guidance about the group and its structure. She had several questions for the group members. We went around the table and introduced ourselves. We also answered “How long have you had Ataxia?” and “What is your favorite thing about this group?” Individuals answered these questions and shared things on their mind:
• No one else knows Ataxia, and there is strength in numbers
• It’s degenerative, so social support is important
• Awareness is important – not just generally but esp. locally
• Want to increase awareness
• Good to be with others; everyone’s so nice
• Misdiagnosis is frustrating
• We are all at different stages and types
• Learn what to expect, get support
• Neuro said he must not have Ataxia since he drives (but he does have it, and some can drive)
• Everyone is so nice
• (Meetings) become addictive, they become a priority
• People know what you’re going through
• Doctors don’t know
• Maybe we should get our copay back if the neuro doesn’t know (we often know more than them)
• Often have travel/TSA problems.
• The wallet card has come in handy. (*NAF has given out wallet cards that explain Ataxia and allow you to put your name, doc name to show to law enforcement/bars/etc. when they stop us for being drunk.)
• Few doctors are doing ataxia research
• Ataxia is rare and not a ‘sexy’ disease, so it gets less attention and little research
• Such a small number of people have Ataxia, so we are considered not worth it for ONLY 150,000 in US
Melinda also asked “What do you want the St Louis Ataxia Support Group to do?” and “What made you come in the first place?”
• Increase awareness among both physicians and ataxians
• Provide more support
• Everyone in group is generous and will give rides –should we do more?
• if you need a ride, please answer: Can you sit in a car seat? Do you prefer a sedan, SUV, truck? If you use a mobility device, can it fold? Do you need a wheelchair lift? Other considerations?
• Do a fundraiser
• Place flyers in doc offices, when we visit the doctor
• Put flyers around town, for example: Schnuck’s
• Help paying for DME (durable medical equipment, things like walkers, rollators, scooters, wheelchairs)
• Help others pay for genetic testing
• Pretty expensive, even with insurance
• Insurance often doesn’t pay
• Often costs thousands of dollars -too much!
• Catch-22: often need genetic testing/definitive results to get DME, Disability, clinical trials, etc. but genetic testing inaccessible so we can’t get supports
• Get a neuro PT – his referred him to us
• EDUCATION !
• Seems that physical therapists are better at support group referrals than doctors
“Which activities can we do?”
• Wear t-shirts
• Carry banner
• Speak to groups
• Offer transportation
Contact the St. Louis Support Group Leaders
Not in the St. Louis area?