Tuesday, April 3, 2012

April is Parkinson's Awareness Month

Every 10 minutes of each day brings a new diagnosis of Parkinson's disease -- and there is no cure or a definitive cause. April has been designated as "Parkinson's Awareness" month. The goal is to raise awareness about Parkinson's and educating caregivers and family about the resources available to them. Parkinson's disease is progressive and symptoms may come on in stages. Difficulties increase as the disease progresses. Learning how to continually adapt is a daily learning process. Parkinson’s is a progressive neurological disorder that affects nearly one million people in the U.S. The incidence of Parkinson’s increases with age, but an estimated 4 percent of people with Parkinson’s are diagnosed before age 50. A diagnosis of young onset Parkinson’s disease does not necessarily mean an individual cannot continue working, but for some, continued full-time employment eventually becomes impossible.

Peep Social was one of my first and only wards who have actually been diagnosed with this dreadful disease. Peep Social was a man that loved rock hunting, gold mining and some recreational stimulation (if you get my drift). He was diagnosed when he was in his prime. Continued full-time employment eventually became impossible. How devastating could it be to all of a sudden know that your future involves muscle rigidity, bradykinesia, tremors, postural reflex abnormalities and trying to find the maximum drug effectiveness?

Peep Social is one of my biggest inspirations. Although on a daily basis he has to deal with the symptoms and what the disease will bring with a new day he will try to make your day better. He will tell one of his quirky jokes or wear one of his t-shirts that exactly tells you how his day is going. When he is having one of his good days instead of having his walker in front of him he is dragging it in the wind. I will never forget the day I was at my father’s funeral and I got a call from the nursing home and he was missing. I panicked and here I am 900 miles away and could not help. They found him at the local casino watching the Super Bowl. I wanted to scold him and ground him like he was my teenage child. This is when I found out you can scold someone with a low tone of voice, a look on your face that expresses disapproval and very few words. I didn’t want to take his sense of adventure from him but it really could have been a disaster. But now we laugh about it together and we learned alot on that day too. Peep Social has this philosophy; there is no sense in trying to do something unless “I” can do it. That is what I love about his courage and goals. Yes, he still has goals that one day he will be able to go rock hunting again.

Peep Social didn’t have much family or care giving support before I did a guardianship on him. Therefore, his medical reviews and medications weren’t up to date. His lifestyle wasn’t helping his disease. I had to do a lot of research and phone calls to find what was best for Peep Social. I knew deep down that he had to have a better quality of life and I was going to give it to him. I found the answer to our endless hours of research, which was Dr. Bernick. I found Dr. Bernick of the Cleveland Clinic through the health care services via telemedicine in our small community. We didn’t have to travel and he was seeing one of the best doctors in our area for his disease. Telemedicine offers many advantages. It can make specialty care more accessible to underserved rural populations. Telemedicine opened up new possibilities for Peep Social. Peep Social now has another specialist under his wing at The Cleveland Clinic Lou Ruvo Center for Brain Health. It’s amazing what these specialist learn everyday about this disease. With our support and outreach hopefully we can find a cure for this disease.   

I encourage everyone to join me and Peep Social in hopes of one day finding a cure for this disease.

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