Living with Parkinson's

If you or someone you love is living with Parkinson's tell us your story, email us at CourageousSteps@yahoo.com and we will post your story here.

Daughter to PD Dad by Kimberly

My grandmother Laverne was diagnosed with Parkinson’s disease (PD) in 1993. Ten short years later in May of 2003, my Father was also diagnosed with PD. These two days were the days I found out what was family is all about. After courageously battling this disease for 16 years, the disease overtook Grandma on Easter Sunday of 2009. She will forever be in my heart and memory. My passion to fight against this disease derives from the love that I have for them and they will forever inspire me.

Courageous Steps for Parkinson’s is a channel that allows me to not only help my Father, but help others who battle against this disease. By joining in the cause and helping to create PD awareness, my involvements provide a way to share my story...

I remember the day my Father was diagnosed…it marked a change in my life. Instantly I prepared myself by rolling up my sleeves and becoming committed. Committed to do whatever it would take to fight this disease.This was the day I became dedicated to do my part in making a difference and doing what I could to help to find a cure. My Dad always taught me things like standing tall and playing fair, but most importantly he taught me that whether you are dealt a good hand or bad, we can only play with those cards with which we have been given. He taught me 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 have 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, you are the only one that can provide the sugar to turn it into lemonade!

Joining the valiant fight against this debilitating 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. I currently am President and Founder of Courageous Steps for Parkinson’s, the Vice President of the Ohio Parkinson Foundation Northeast region, a "Patient Like Me" member, University Hospitals Neurological Institute Leadership Council Member, a board member of the Parkinson Education Program of Greater Cleveland, A World Parkinson Congress Organizational Partner, 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. Even though this disease may not have cure, my involvement in these PD organizations is my way to help to manage 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!

Mickey Zemba: "My Life's Mission Statement ! "Life should not be a journey to the grave with the intention of arriving safely in an attractive well preserved body. But rather to skid-in sideways, chocolate in one hand, drink in the other, body thoroughly used up, totally worn out and screaming “WOO-HOO” What a Ride!"

Watch Lee Medford's Story ~ click on the You Tube Link:

http://www.youtube.com/watch?v=wkcmJuYMHAU

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 - By 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.