Parkinson's Diagnosis to Fundraising

By CommunityMemberfa5fd5

2 min read

Hello everyone! I am one of the few people that can say that they have had Parkinson's Disease over half my life. Diagnosed at 24 (now 48), I was devastated when I was diagnosed but I am now glad my neurologist at the time knew enough to properly diagnose me and I think getting a jump on it early was beneficial since I was able to get on a medication regiment right away. I take 2 Amantadine and 4 Levodopa pills four times a day. That might sound like a lot but bear in mind that I have built up somewhat of a tolerance over the past 24 years.

Rolling back the clock

Many people after having this disease are using walking aids or wheelchairs but I am not, and God willing won't have to any time soon. I will admit that by a long shot in 2015, I applied to a trial study by the University of Maryland to be the second person in the country to have them perform the MRI/Focused Ultrasound procedure which successfully "rolled back the clock" in November of 2015. Now I'd like to say there has been no progression, but I am smart enough to realize, no matter what, some progression is inevitable. But believe it or not, I still golf, bowl, and up until this last year, ride a bicycle (more about that shortly). Here's the real kicker to some, I am a professional window tinter for cars and buildings and I still can do most of it (with a lot of concentration) and still have it look amazing.

Research and fundraising

In 2016, my wife and I created Team Fox of Michiana where we do fundraising for the Michael J Fox Foundation. Since 2016 we have raised over $100k in funds for research for a cure and we are very grateful to our local community for helping with that. Our recent endeavor is creating a partnership with TerraTrike in Michigan. Like I mentioned earlier, up until this last year I was somewhat comfortable riding a regular bicycle. Well after a couple of close calls, I decided to look into recumbent trikes and sell my road and trail bikes. They are pretty cool looking and seem stable and fun. After sending an email blindly to TerraTrike, they called me the following day to meet with them to see how we could work together. Come to find out, some of the staff including the National Sales Manager had family or friends that are Parkies like myself. They were awesome to us and made us feel like family so we bought two trikes this last week and are now working with them to promote exercise to slow the progression of PD. We will be at Cycle-Con in Xenia, OH, September 20-22, speaking with everyone about our experience with PD and the role of exercise for PD next to the TerraTrike booth.

I have really just summarized the past 24 years in an extremely short way and have a lot more I could share. I am an open book for question and experience so don't hesitate to ask. I am new here and don't know exactly how the system here works so bear with me if I don't respond immediately.

Thank you all for taking the time to read this.
Steve 2022 Fundraiser

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Old Guy Member
Now that makes two of us, that I know of, with a strong belief that staying physically active is very beneficial in the fight against rapid progression. I'm certain that there are thousands of us ot there. In my earlier post I mentioned that Golf, especially if you can walk the course, is a physically good workout. It also is mentally challenging, and provides social contact. What appears to be missing is the empirical evidence needed to promote and support rehabilitation, and training that many of us may need. I'm quite a bit older (72) and have suffered from a number of additional illnesses requiriing operations and recovery. My experience, partially age related, is that during these phases of strongly reduced activity, the Parkinson's symptoms increase. Sometimes they can be reversed, but the battle to regain functionality is a solitary effort with a lot of hard work. Untill a recognized medical organization makes and publishes a study documenting our observations, it will be up to us to share and support each other. By the way, I met and learned a lot about playing the game with Parkinson's from a pro in Bocca Raton, Florida. There aren't many around with his knowledge, skills as a teacher, and empathy.
jellybean Member
This is jellybean <inline-mention username="Old Guy" user-id="6724951"/> I do not believe you are old my husband got diagnosed at age 42 and will turn 65 in November! Long time I had to put him after caring for him 20 years he has dementia and has had it about 12 years started doing things that were not safe for both of us. It was so hard waking up alone every morning I hate it and he hates not being at his home. He is mad at me but as time goes by his mind is not as good as it use to be the last year and his bring hurt by me and furious at me is starting to not be so hard to take. What do I do in life I don’t feel like getting out of bed some mornings and the facility is 5 minutes from OUR home so I see him a lot! Try to learn a new way of living. Or really just motions day after day. Not rich and economic world is hard for me to learn to run and take care of everything I use to do with him. We will be married 45 years soon this year. I went from my parents house to being married. I’m trying to keep it together for him but I need to know how do I go on. He is still able to do a lot for himself and is in reality most of the time but the dementia has been creeping in over the last year. He says he’s at work and this happened when I talk to him on phone or he had to go down stairs to do something the place is one story. I have been by his side for 20 years not leaving but very very scared how do I live with out him and money the facility gets all his social security and I’m on social security disability from car accident! The person who had it needs help I’m getting him that as much as I can I am flying in the wind! All our dreams worked hard for us is over. What do people like me do ? I’m so scared I don’t want to wake up to another day like I am like this but I know my husband needs me. Any comments of help would love to hear it and I am a praying Christian so I have prayed for years! 
1. Old Guy Member
 <inline-mention username="jellybean" user-id="3095055"/> Old Guy here. That is a nickname given to me many years ago by the 5 year old grandson of my cousin. My list of chronic diseases didn't start until 5 years ago. Memory loss and brain fog have gotten better. A significant sleep dysfunction was the root cause. But back to my age. My report from my 1/4ly visit with my neurologist ended with saying that the overall impression that I leave is that I appear to be much younger than 72. It was 4 years ago that he diagnosed with early onset Parkinson's. I'm now stage 2. That is a walk in the park compared to the marathon you and your husband have been through. He is very fortunate to have some like you. And you can be proud of your decisions and hard work along the way. Reinventing your life is not easy. I have been through the process several times. Set aside some time each day to figure out what activities are fulfilling and make sure uou have the potential to achieve the new goals you set yourself. Take pride in your past life while you embrace the new challenges. Accept and celebrate each step. No mater how small. The journey itself is as import as the goals we set. Your husband won't be able to share the new path. But keeping the contact is both kind and generous. The reward is knowing you are doing the right thing.
jellybean Member
<inline-mention username="CommunityMember1179" user-id="4729165"/> thank you for your response and kind words ! My grandkids say “ Wow” when they hear my age and say your old” I laugh the way they say it is so cute and thank god have had a good childhood no bad trauma and the oldest grandchild was old enough to understand but their parents had been preparing her for it saying when they asked why she doesn’t want to play like she use to. It hurt her but from what I got she handled it pretty good she called to tell me when she did pass and was sad but not crying like I have in the past when I was a little girl or young adult and a pet died but did not have the help having it in her mind that she would be in heaven and not in pain any more. Took couple years but got a puppy so now doesn’t seem to hurt as much. Your age story is cute I just meant if you felt old yourself I don’t believe you are. You sound kind and intuitive to how it affects each individual or family. One day I may get to a place where I’m not living in a day I wake up with this dark place feeling in my stomach all by myself. I get what you and others are saying but just don’t see me ever reaching it. I have been with him longer than I was when my parents were alive I was very close to my mother and respected her very much as I got older but she was my world til I met my husband I was 15 and couldn’t go on a date alone with him til I turned 16 which wasn’t long after I met him so I think you can understand why I am having a hard time. I don’t see that place existing just me existing if he passes first. Feel it is going to be many years of being in this dark hole. But thank you ! Jellybean