Monthly Archives: March 2009
We Need A Cure
Doing what is right isn’t always easy. It’s not always popular and sometimes it may be misunderstood. I am not a scientist but I do know that not long ago brain surgery, heart surgery, and organ donation were considered to be taboo. These medical procedures have saved millions. In the past 75 years modern medicine has gone from thinking that hands should not touch the human heart to DNA to mapping the human genome. I would categorize these life-giving procedures to be monumental leaps in the right direction. Many of the people that I love are still here because of these relatively new and innovative medical procedures. As one of the over one and a half million people with Parkinson’s disease, I have been waiting for a cure for over 20 years.
American innovation is what made this country a world leader. I am an inventor. I have Parkinson’s Disease. It’s a disease that I have battled and lived with for over 20 years. I’m currently 42 years old. Parkinson’s Disease robs you constantly of independence and dignity. As someone with young-onset Parkinson’s, I am fortunate that the progression of this disease is slower than many forms. Since I was 17, I have watched my balance, speech, coordination, agility, and gait falter due to this chronic illness. I have watched friends divorce, get hospitalized, and die from Parkinson’s.
President Obama’s lifting of the federal restrictions on embryonic stem cell bill offers hope and promise for those people and their families suffering from chronic disease and spinal cord injury. I hear people ask me “Why do the research?” My answer is how are we ever going to know if we don’t try? I think the American ill deserve any potential cure that medicine can create. If it means using something that is going to be thrown away, a part of it can live on and ease suffering.
Everyone gets sick at some point in his or her life. I didn’t get sick on purpose and I had very little control over Parkinson’s. There is no known cure and scientists still don’t know what causes it. Even if you don’t have a chronic illness now, you or someone you love or care about very well may. It’s a sad reality.
Stem cells show great promise and are already being used, but the lines available right now are limited and may be tainted. This bill may change those limitations. I am tired of waiting for a cure and I know that I am not alone. It’s taken over 8 years to make this day a reality. This isn’t a partisan issue. I think the real issue here is the hope of giving people back their lives.
It’s a dilemma facing many of my friends with Parkinson’s–when should I have Deep Brain Stimulation (DBS) performed?
There is little argument that DBS can make a remarkable and life-alterating change in many Parkinsonians’ lives. There is also little argument that this invasive surgical treatment is a risky brain surgery that still remains to be a mystery to doctor, patient, and even the developers of the procedure. Why and how it works is still yet to be unravelled. The complexities of the human brain hold volumes of unanswered questions and DBS, while it can prove to be of major benefit should be severely critiqued before going forward with this decision.
DBS is portrayed in the media as a panacea. While DBS may make an unquestionable impact on a patient’s life, it is still yet to be determined how long this modern advance is truly going to remain efficacious. Be aware of possible infection, lead breaks, minor surgeries every 3 to 5 years for battery changes, and even though your medicine dosages may be reduced, you will still be taking your meds.
Before you elect to undergo what can be a tramatic and potentially irreversible procedure, make sure that you haven’t overlooked all other forseeable options: Complimentary therapies such as Reiki, Yoga, Qi Gong, Meditation, and Exercise. Have you explored and exhausted the variety of PD medicines? Talk with numerous people both locally and around the globe who have had it done to make sure DBS is right for you. Understand what symptoms DBS may help and those functions that it may hinder.
Check out my friends the Church’s book, Living Well With Parkinson’s DIsease: What Your Doctor Doesn’t Tell You…That You Need To Know and Jackie Hunt Christiansen’s book Life With Bob .