Hi, my name is Jonas. I'm 53 years old, and all in all, life ain't so bad. I have a great wife of 30 years, and together we raised 3 damn good kids, one of which has made me a grandpa. We have what I consider to be a nice house, a dog,
a cat, and I'm still trying to make my first million. Sounds pretty normal doesn't it? It is, except I have a really stupid medical condition called "ATAXIA".
To put it plain and simple, part of my brain is deteriorating. That's right, it should be a cheesy black and white horror flick - "The Incredible Shrinking Brain". It has some similarities to Parkinson's and MS, but is a much rarer condition.
In the case of my family, we got hit pretty hard. It comes from my mother's side. Her mother, sister, and brother along with a nephew are/were affected in Germany.
My mother, myself, my brother, my sister, my daughter, 2 nephews, and maybe more are all the chosen ones in this country. It is estimated that some 150,000 people here may have some form of it. That is still a very small number in comparison.
I was athletic in high school (soccer, track, ice and roller skating), and also played bass in a rock band for the better part of 25 years.
I worked construction, some truck driving, was a Greyhound bus driver for a while, and eventually became a self-employed painter/decorator. Because ataxia is progressive, things were always changing. I am now on permanent disability, and have been for 10 years.
I sometimes use a walking stick, which will change to a walker, which will eventually be a wheelchair.
I'm really not complaining, just stating the facts. It is what it is, and these are the cards I was dealt. I think I played the best hand that I could.
Even if it doesn't happen in my time, I think that with effort, support, and research, this will someday go away.
Attitudes need to change, politicians need to get real, and more effort and dedication need to be focused on not only ataxia, but other devastating conditions as well.
I ask everyone to just take a moment, look around, and appreciate what you have. I know it sounds corny, but it's true. You never know what tomorrow will bring.
Please consider attending our fundraiser, or making some type of contribution. Help make the future better than the past.
"In my dreams, I don't have ataxia.
About 12 years ago, after I finally found out what was wrong with me, I started looking around for others in my situation. I found the National Ataxia Foundation, and found the nearest support group to be 150 miles away in Fort Wayne, IN.
I attended a meeting there, and was amazed that there were others out there who were like me. I couldn't understand however, why a metro area as big as Chicago didn't have a support group. I had to change that.
I rolled up my sleeves, made calls, sent emails, did research, found some contacts, and about 1998, started the Chicago Area Ataxia Support Group.
Because of personal reasons, after 4 years, I stepped down as the group moderator. I am still a member, and attend meetings as able.
Along with the help of family, friends, and the CAASG, I am undertaking what will be an annual fundraiser. Only intensive research and study will lead to a cure. This will only be done if people get up and do it. Please help in whatever capacity you can.
About the Golminas Family
Penny joined our support group when I still ran it. She and husband Don have been attending meetings faithfully ever since.
Due to the increasing difficulty in the lives of the rest of the family, her children have stepped up to the plate to assist in fundraising efforts.
Michael will be having a major impact on this year's efforts. The following paragraphs give an insight as how everyone's life changes as a result of this relentless disease.
I was asked to write something about how my family is impacted by my mom having Ataxia. Before I go into that, I want to talk a little about her before Ataxia. To put it simply, she went out of her way to take care of everyone around her.
When I struggled in school due to hyperactivity, she had the task of finding me healthier foods that I would not react so intensely to. This often meant making one meal for me, and another for the rest of the family. She would often shop at different stores for my food. It is something I didn’t appreciate until much later in life.
I remember her helping a parish family that had huge medical bills, and struggled to send their kids to the Catholic school. My Mom and her friends had a garage sale to raise money, and anonymously paid the tuition. I could go on with many more, and I am sure that most of you have similar stories. She is a giving person.
The question was how this has impacted the family. The first thing that comes to mind is the extra efforts of her friends and family that come over to visit and help out. Some of us are even raising money to help fund the research. My brother Joe has been a big driving force in that. He has inspired me to get involved with Jonas and
None of that however, compares to what my Dad has to endure. Many of you think that your job sucks, but I don't think you would trade with him. I don't think you need the details of what he goes through on a daily basis. All I can say is that he is awesome. This is a man that truly shows us all how “to have and to hold, in sickness, and in health.”
After thinking more about the impact on us, I came to realize that the impact isn't what we do for her, but what we are missing out on. It just kills me to know how much she loves her grandkids, and she can't even hug them. She would love to have the kids sleep over, and take them to McDonalds. I just imagine how much more fun everyone would be having if she were healthy. It is a shame that these are things we have to imagine.
Please help us raise money to aid in the Ataxia research.