Central Indiana Ataxia Support Group Meeting Recap

Submitted by Amy Draves

We had a relatively small in numbers meeting but LOTS of encouragement and support from each other. We had two speakers – Karen Lawrence from RHI and an enthusiastic, wheelchair athlete named Deb.

 

Karen is in charge of the adaptive sports program which is growing with lots of different opportunities available to us. “The mission of the Rehabilitation Hospital of Indiana Adaptive Sports Program is to provide competitive and non-competitive opportunities for individuals with physical disabilities to enhance quality of life, promote physical fitness, introduce recreational and wheelchair sports and challenge participants to competitive levels.” RHISP began in 1996 with adaptive water skiing and has grown to include quad rugby, Wheelchair Basketball Power soccer, Scuba diving, Archery, Adaptive Dance, Adaptive snow sking, Bocce Ball, Bowling, Swimming (advanced & beginner) Adaptive rowing and even ballroom dancing. This list isn’t inclusive of all the opportunities available.

 

Visit www.rhisports.com to view a current list of sport activities and monthly clinics. You can also contact Karen at karen.lawrence@rhin.com or call 317-329-2212.

 

One of the encouraging things about these programs is that they make it as adaptive as we need. for example with the water skiing clinic, they have a wheelchair that can take you into the water to the adaptive asking equipment has two options (both sitting down). One is a seat, and the other has pontoons on either side of the chair The option to hold on the towing rope or to have it attached to the seat. There are two wave runners that ride behind the skier with two persons each on it (one to drive and the other to jump in and help). There are also spotters and swimmers on the boat. Karen said it takes about 50 volunteers to aid in the water skiing clinic…so there is help available all the time. Lunch is included in the clinic. Deb has been in a wheelchair for awhile now and she said it was so freeing to her and she highly recommended for us to give it a try!!

 

There is an Adaptive Sports Expo at IUPUI on June 6 (in the Maditorium) located at New York and University Dr. If you want to receive the RHI newsletter email RHIsports@rhin.com . There is a fund raising breakfast on April 23 at the 38th St and 465 location. I have several flyers available and if you are interested in my mailing them out to you, please let me know.

 

We talked a lot about swimming and exercise classes in the water. One of the best therapy pools in the area is at the “Health Clinic”. (38th and Guion Rd.) They even have benches along the sides of the pool – inside the water. A therapy pool is much warmer than a lap pool and Deb really recommended this. Most of us are on disability and can use Silver Sneakers to cover the cost.

 

Another opportunity for those who are 55+ are Oasis Classes. It cost $15 to join and offers over 3,500 healthy wellness classes. You can view classes at two different websites. For those in Indianapolis area: indianapolis.oaisisnet.org. For the rest of Indiana go to oaisisnet.org .

 

Another opportunity for information can be found at CICOA – Central Indiana Center on Aging.

 

Information was given about the Michigan Support group and I will try to reach out to them to gain information from them on how their meetings are organized. One of the things that they do is after meeting together jointly, the Ataxias and the caregivers separate to focus on each roles we have.

 

Cheri Bearman sent some information to share with everyone. One was a submission to Generation Magazine from one of our member Brett Mitchell – “Ramblings Of A Disabled Nature Lover”. Thanks Brett for sharing with the magazine. Generations is always looking for submissions so I encourage you to add to the publication by sharing your experience. Several others thins were highlighted – CORDS which coordinates people with rare diseases. I encourage you to sign up at sanfordresearch.org/CORDS

 

There are two other opportunities that we should think about for when we die. One is the Brain Tissue Donation Program sponsored by NAF. To find out more information about this contact Mary Ann Peterson at 763-231-2750 or email mary@ataxia.org. The second is Tissue donation for research in Friedrich Ataxia. Arnulf H. Koeppen, MD is the contact for this . Phone is: 518-626-6377 and the email is: arnulf.koeppen@va.gov or koeppea@amc.edu

 

If you haven’t joined the National Ataxia Foundation yet, I highly encourage you to do so. This membership is free. They have so many resources available online to help us. Please sign up at www.ataxia.org/JoinNAF – you’ll be glad you did. 

 

Some sad news from our group is that one of our founding members, Tom. His Ataxia has progressed so much that he now is living in an Assisted Living Facility. We all signed a card for him. I would encourage you to send him a card as this is a hard move. 

 

Congratulations to Cheri and Gil on the birth of their granddaughter, Isabelle. She lives in Seattle and they get to meet her on March 5-9. Pray for their travel and time together celebrating this precious baby!

 

I have been accepted to a Friedrichs Ataxia Clinical Trial for a new medication. I leave tomorrow and will be in New Jersey for 10 days. I pray that a new medication will be discovered to help us. There are so many trials available and the only way medications can be tested and ultimately approved is for us to volunteer for these types of studies. I encourage you to explore the opportunities for this. It may not help us – but my prayer is that it will help others who follow us that are afflicted with Ataxia.

 

Our next meeting in the 2nd Saturday on May – the 9th. Mark your calendar and really try to attend. I’m working on getting a social worker to attend to give us information on thing like power of attorney, medical POA, and any paperwork  that we should have prepared before we actual need them.

 

Have a great Valentines Day and Easter. If I can help you out in anyway, getting information for you, please send me an email or test and I will endeavor to help you.

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