I'm proud to say that Rob Wolfinger isn't only one of my greatest heroes, but he is also my family member. He is my aunt Rose's brother and, ever since I was a little girl, I remember connecting with him. Rob was diagnosed with Myotonic Muscular Dystrophy at age 15. Although he has lived the majority of his life with this progressive and debilitating disease, he hasn't let it affect him at his core. He is truly one of the strongest people I know.
Rob lives in Wisconsin, so unfortunately we haven't had much time together over the years. However, we write letters back and forth and his words never fail to brighten my week. If there is one overarching quality I will always associate with Rob, it is optimism. No matter what comes his way, he finds the beauty in things. He appreciates his surroundings, his opportunities, and most of all the people in his life. I love hearing from Rob and learning how he approaches the challenges set before him. Particularly last year - when I was battling depression and self-pity - his words helped me find tremendous strength. Rob's spirit and gratitude make me want to be better and to savor the small joys in life. His e-mails have been more important to me than he knows.
Enough from me. Now allow me to to introduce the amazing Rob...
What is your diagnosis? When were you first diagnosed and how old were you?
The diagnosis of Myotonic Dystrophy was made in the early 1980’s. It all began with a bike accident at the end of my freshman year in high school when I was 15 years old. I was jumping on a ramp with a cousin and a friend. As I rode up the road and hit the ramp, I went up high into the air. I came down face first onto the pavement. I severely cut my tongue and upper lip and needed more than one hundred stitches to reconstruct my tongue. The doctors thought it very odd that I was unable to release my hands from the handle bars to protect my face and buffer the fall, so I was sent to a neurologist.
At the initial evaluation appointment, the neurologist asked me to remember a series of words. I thought I did pretty well, but I actually forgot the words he gave me. One week later I went to a hospital for more tests. Following that, I went to University Hospital in Madison and had a muscle biopsy, where the diagnosis was confirmed.
What would you tell a person whose has been diagnosed with your condition and/or chronic illness in general?
Well, your life will change. That’s for sure. It may happen slowly or fast. I would say you should do anything you can while you can still do it, or you’ll be sorry later that you didn’t do it, or at least try it. Make sure you go to doctor appointments and find a doctor that you feel comfortable with. Make sure you get one that is familiar with Muscular Dystrophy and its many different types. Get one who knows what’s going on, including recent developments.
I went to a local pain clinic and had a doctor who gave me trigger point shots in my stomach. I don’t think it helped, but the associates showed me how to do Biofeedback. They used sound therapy meditation tapes which I liked and found very helpful. My favorite tape was the rain tape. I got so relaxed that it took effort to move. I would really recommend relaxation tapes. There are many good ones.
I tell myself that life is like a river. You have to go with the flow. Also, I try always to keep a positive attitude because it makes life easier. I think about the good things along with the bad things in my life. The yin yang symbol hangs in my room always. It’s a good thing to have around for meditation and keeping things in balance.
Please explain how your condition affects you.
Myotonic Dystrophy affects all muscles in your body. It starts with hands and later impacts the feet. In Myotonic Dystrophy the muscles cramp and won’t release. Pain is not present and is not a factor in this disease. If I ever have pain, the doctor said he could give me medication for the pain. I went to many doctors. All they said they could do is giving me pills for the pain. I’ve never taken pain pills. Thankfully, I don’t need them to function.
When it started I had trouble using my hands for things like opening doors, bottles, etc. As it has progressed over the last thirty years, I have more muscles involved. It became more and more difficult to walk as the muscles weakened, so I began to use a wheelchair at times. I have been unable to walk or stand on my own for several years and now always use the wheelchair. Since I am unable to use my arms and hands to move in a standard wheelchair, I got around by using my feet to propel myself.
I have been residing in a long term care facility for two years. At first it was very difficult to adjust to the idea of leaving home and being here. The first week I just stayed in bed and slept, mostly. The second week I began to eat in the lunch room and also started physical therapy. Now, I’m involved in many activities such as resident council, food council, Wii games, balloon volley ball, crafts, bingo, bowling, etc. Having a computer has allowed me to communicate with friends and family, which is great. I also enjoy playing computer games like Spider Solitaire, bowling, golf and checkers.
I do therapy in at 6:00 am because there are fewer people there. My physical therapy is no longer paid for by insurance, so I can only do it on my own when there is available equipment. The exercise is very important to me to keep my muscles strong and my mood up!
Last year, after a long wait and struggle with funding, I was able to get a motorized chair. I feel much more independent and comfortable in this chair. It’s also so much fun to get outside and explore the surroundings and meet people. I have found my favorite spot in a park near a river. It is so peaceful and quiet when I am there alone. I love it! The chair has allowed me to go places on my own; places I could never go in my other chair. Fortunately, in my city all of the buses have motorized lifts and handicapped areas to secure the chair safely. I went to a large shopping mall last summer by myself, even transferring buses in the process. I found that many of the people I encountered during the day were so nice, understanding and helpful. I really appreciate the independence that the chair gives me and what it allows me to do.
One of my physical therapists was so against my getting a motorized chair because he thought I would only use this chair, become lazy and discontinue my workouts, etc. I showed him that this was not the case. I used the braces, the other wheelchair for part of the day and worked hard on all the exercises that I had been doing. He was amazed and admitted that the chair was a great thing for me. He said all physical therapists hate motorized wheelchairs. At this point, I am no longer able to walk at all, even with the braces, so I am so happy to have this new freedom in my motorized chair. I still use the other chair at times to exercise my legs. I lift wall weights five days a week and ride a New Step bike three days a week with help of an aide who helps me get on and off the bike. I ride for about twenty minutes each session. This exercise is very important to maintain the muscle I still have. Some days it’s hard and not much fun, but it’s important. "Use the muscles or lose them" is what one therapist says.
The hardest thing to cope with is not being able to do the things I used to do, especially walking. It isn’t easy to rely upon others to do things for me, like dressing and cleaning. It’s hard at first to lose this independence, but you do get used to it. I have so many nice people who help me both here and in my family. I hope that one day I will be able to move back to my home and get whatever help I need there.
What are you most proud of?
I’m proud that I’m able to overcome the fear and obstacles to get out into the public on my own. I was afraid at first, but after I did it I found out that it was a lot of fun. I am proud that I was able to do this. I can’t wait to do something new.
Where do you get your strength?
I get my strength from my soul or heart. It’s inside. Also, it’s great to have people like Maya, my hero. She is going through so much pain and difficulty but keeps active and always tries to help others. She gave me a guardian angel that lives in my hat. I wear it every day. Keeps me going strong!
What are three things you couldn't live without?
Friends and family; my motorized chair; Staying active and independent.
If you could send one message to medical professionals around the world, what would it be?
Please hurry and find a cure that’s available at a cost to everyone. Try to understand our feelings and how hard we are trying.
Thank you so much Rob! You're truly amazing.
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