Courageous Steps for Parkinson's

Daughter to PD Dad by Kimberly

My grandmother Laverne was diagnosed with Parkinson’s disease (PD) in 1993. After courageously battling this disease for 16 years, the disease overtook her Easter Sunday of 2009. She will forever be in my heart and memory. May 2005, doctors determined my father Mickey’s stuttered steps and short breathes were the cause of PD. He is an early onset at 57 years old. My passion to fight against this disease derives from the love that I have for both my Grandmother and Father and they will forever inspire me.     

I remember the day my Father was diagnosed…it marked a change in life that I can remember I instantly prepared myself by rolling up my sleeves and committed to do whatever it would take to fight this disease with my Dad. I became dedicated to do what I could to help to find a cure. It really was not until then I realized that the disease is more than just tremors and trembling. The disease affects the most basic abilities that we often take for granted such as walking and talking. My Dad always taught me things like standing tall and playing fair, but most importantly he taught me that good hand or bad hand, we can only play with the cards we have been dealt. He taught the importance of taking each day and cherishing it as if it was your last. I believe that God provides challenges to those he knows has the strength to handle them. If you have ever have met my Dad, there is no doubt that he spells strength with capital letters. My Father’s positive attitude and outlook on the disease allows me to believe and have faith that when life serves you a sour lemon that in all actuality it’s really providing you with a glass of sweet lemonade!       

Joining the valiant fight against this incredible disease that has no cure has provided me with the strength to want to tackle any obstacle that is set in front of me,  my Father,  and others who may suffer from this disease. By staying up to date with PD research and remaining active within the PD community, I have been able to raise awareness and much needed funds for research.  I currently am the Vice President of the Ohio Parkinson Foundation Northeast  region, President of Courageous Steps for Parkinson’s, Daughter to PD Dad, but most importantly, a Parkinson Fighter that is determined to do what I can to improve the quality of life of those affected by the disease. I am dedicated to take the small steps that have resulted in huge strides because I understand that together we can and will make a difference!

Changing Light Bulbs by Cherie Mann

When a person has PD, how many people does it take to change a light bulb? - To change the light bulb in my bedroom, you have to stand on the bed. My sister-in-law is too short; my mother is too old and unsteady. Sooo, that left me.

I used the ladder to climb on the bed. Luckily I have a 4-poster. With my sister in law holding on to my belt to steady me, and with frequent breaks, I proceeded to slowly unscrew the knob that was holding on the globe. I get light-headed when I look up and get very unsteady. So when my sister-in-law went to wash the globe, I am hanging on the post, looking down. I was able to screw in the bulbs, but the globe was another story. My left arm would shake so much holding the globe you could hear it rattle. My right shoulder was in pain and didn’t seem to have enough strength to hold it long enough to line it up with the screw. I kept trying to line it up with no luck. Enter my mother, who tried directing me to ‘Move it toward the window, now move it a little toward the dresser” I would have to stop because of the lack of strength and the pain in my arm and shoulder. I would bring my arm down and we would do it all over again. Since I had already put in the lightbulb, we decided we could wait for someone else to put on the globe. Now I had the problem of getting off the bed. I don’t think it was really freezing but I sort of got stuck and couldn’t move my left foot sideways enough to get my right foot on the ladder. With my family as my cheering section, shouting ‘come on’ you can do it’ I was eventually able to get my foot moving and get off the ladder with my family yelling ‘Yeah’. They left and I was finally able to get back to the PLM website. Later my nephew was able to put up the globe in less than a minute.

So, to answer my original question, it takes four people to change a light bulb. The PWP, someone to steady them, someone to direct, and someone to finish the job.

Wife to PD Husband - Dawn

I am married to a wonderful,active man, who was diagnosed with PD, 12years ago. His 1st known symtom was actually in 1995, when he started stumbling when he was running. Gene was always active, playing sports & running before that. In 95 he had orthoscopic surgery on his right knee, which helped arthritis pain, but did not help the tightening of his knee that caused him to stumble. It wasn't until he went to a Dr. for his shoulder which he blamed on injury, that the tremer started & finally got the diagnosis of PD.

  Gene's PD Dr., David Riley, at UH, offered Gene the oportunity to go into a drug trial program. He was on that double blind study for about 2yrs. It turned out he was taking Mirapex, which he still takes 4 times a day with additions  added over the years.

 It has been a tremendous adjustment for both of us. Probably the greatest change for me at 1st was I have to do most of the driving. And, of course, PATIENCE.

  This spring, at his regular visit to Dr. Riley , it was suggest ed that he have the DBS(deep brain stimulation) surgery. He finally got through all the pre -op testing only to have the schedualed surgery scratched because the anithesiologist thought his heart rate was to low to be safe. 8-05, he had a pace maker put in with the assurance that he could then have the DBS. We are anxiously waiting to be reschedualed.

  Through all this, Gene hasn't let PD slow him down anymore than he has to. He still plays golf, works in the yard, when I need some help & right now he is downstairs finishing our basement.

  I'm 63 & Gene is 62, but we often wonder at that. Where did the time go? I pray everyday we continue to take care of ourselves many more years. I love my yard & garden & my family, which are all out of state.