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How the Central Indiana Ataxia Support Group Was Started

Author: Amy Draves

Upon learning that I (Amy) for sure had Ataxia of some kind, I joined the Facebook page of the National Ataxia Foundation. Connecting with people who knew so much more than I did was important to me. On a post by Teressa Cocarro, I saw she was from a town near where I lived. Another person also connected and we met for lunch.

Teresa and I hit it off and met a few more times when I approached her about the possibility of co-chairing a support group. The responsibility with independently leading was overwhelming and having someone else join in this venture made it less intimidating. As most of you know, we have good and bad days and the security of having someone else to rely on was important. We got in touch with Indiana ambassador Cheri Bearman and also Lori Shogren and got the okay to proceed.

The first thing on our agenda was to find a location that what easy access, close to the freeway. We made an appointment at St. Vincent of Fishers which was right off the interstate. They offered us the use of two rooms free, which was so generous of them as we had no budget. Deciding to meet bi-monthly, a date was chosen and an email was sent out to all the people on Cheri’s database with our organizational meeting. We decided to meet from 11-2 with everyone bringing their own beverage. We supplied a light lunch for our first meeting.

Not knowing what to expect – we were pleased with the response. The people all concurred that we wanted our group to be supportive, a place to be educated by special speakers and each other. The main thing was that we didn’t want this to turn into pity party/gripe sessions…which thankfully it hasn’t.

At the first meeting one of the first things we did was to introduce ourselves to each other and share what our strain of Ataxia (if known) was and family history. Then what type of guest speakers/topics they would like to have was asked. Compiling a list, we then inquired if any of our members would be willing to contact people they knew that may be willing to present to us. Everyone was on board.

Our goal was to not just be the co-leaders of the support group, but for everyone to have ownership too. One of the persons both Teresa and I knew was our Neuro Splash Instructor. She has a recreation therapy degree and encouraging our members to keep moving was the impetus in inviting Katie.  She knows a lot of people in the care community and she made several suggestions for speakers. One was ICAN service dogs. We went online to find out how to contact them. It was extremely helpful to learn about the many resources available to the disabled community.

Another person we had come was a fellow classmate from our swim class who is a Tai Chi instructor. Learning new ways to move is beneficial to all of us, and this was a totally different from movement/exercise that we had previously done. Anne was well received and spurred conversation about possibly chair yoga or some other form of exercise that would benefit all of us. At this point that hasn’t happened yet, but thanks to the internet and some digging – We are sure that a person will be found.

Cheri – Indiana’s ambassadors’ daughter is a speech pathologist.  She was invited to address the problems that many of us encounter such as slurred speech, swallowing issues, etc. Another person in our group has gluten issues and connected us with a nutritionist who spoke about our gut health, which was informative for not only our fellow Ataxian’s but our caregivers who also attend our meetings.

Another member had visited a genetic counselor and the consensus of the group was we really wanted to have her come and share. It is wonderful that these educated people were able to bring their presentations to a layman level giving us so much more understanding of their area of expertise.

A friend from my church and I (Amy) were speaking. She is a counselor and our conversation were about some of the things that I could no longer do. She talked about the grief people experience (Ambiguous loss) when there are so many losses. I asked her if she would be willing to share with us, and that presentation was one of our best. So much so that Tammy was on a panel at the NAF conference in Las Vegas.

One of the needs we realize is for our caregivers and their unique circumstances they endure in the world that none of us ever imagined. Finding a social worker or someone who can speak about palliative care, hospice, nursing homes, in home care, and preparing advance directives, and power of attorney (in general) and medical power of attorney are some of what we hope to have in some of our future meetings.

I (Amy) am so thankful to share the responsibility of leadership with Teresa. We are so blessed to have become good friends and a true source of support to each other. Sharing our family issues, frustrations, and life in general has been wonderful. If one of us is unable to be present at a meeting, it is a comfort that the other one is there. We recommend this type of leadership to everyone. Having similar personalities is a plus to co-leading. Also being able to communicate on a regular basis is a must. We text, call, and see each other weekly at our swim class.

For every meeting copious notes are taken and then emailed to all the people on our list. This helps build unity between all of us. Some members are not able to attend due to either distance or advanced stages of Ataxia. Knowing that someone else is experiencing some of the same issues as they do is very encouraging. Sometimes we hear from them, but even if they don’t reach out, just having them know we are here is good enough.

Several of our group have gotten together for lunch. Notes sent to each other has also been a form of encouragement. When a new grandchild is born, the holidays, birthdays, or just thinking of you is always a pick me up for the recipient.

One of the things I am trying to do is reach out to the Freidrich’s Ataxia community as I was recently diagnosed by a genetic test that I too have it. Most of our group has some sort of SCA. I’ve been reaching out to several people and am hopeful that we can join forces in making all forms Ataxia known. We may have different strains of this disease, but we are all experiencing similar familiarities.

It may appear the all we do at our meetings is have speakers, but that is only a portion of our time. We intentionally build relationships, share our struggles, and always try to make everyone feel welcome. Almost every meeting there is at least one new person, so short synopsis from everyone present is a norm.

The only fundraiser that most of us participate in is the yearly Walk N’ Roll. This has been held up in Fort Wayne. Many of our members make the two- hour trek north to attend. This event may be moved to the greater Indianapolis area in the future. We hope to find some other types of fundraisers just from our group! We have become such a close group. There has been strength in just knowing we are all in the same situation.

It is our hope that we have encouraged you a little as you endeavor to build up the Ataxia community. We, as co-chairs, believe there is hope with educating each other!

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