Parkinson's: Real and Up Close

Do you have to have Parkinson's disease (PD) to write about it? I’ve often thought about and asked myself that question. So, what would you say? Is the information more or less credible because you live with PD? This important question is best answered, in my opinion, by someone who walks a mile (or 100 feet in some cases). I see this subjugated in the philosophy of ParkinsonsDisease.net. They earnestly seek the input of those of us living daily with the struggles and the victories as well as the coping mechanisms each of us uses to overcome the disabling and often defeating struggles with PD.

Why is this important?

It is important to put it out there for all those living, caring or dealing with anyone who is living with PD. It's important to have access to reliable and medically correct information to arm you with enough "ammunition" to win your battles with this potentially crippling disease. It is also essential for those of you caring for someone with PD because not all symptoms are immediately identifiable. As a caregiver there may be cognitive symptoms may not be able to recognize. Examples of this could be memory loss, organizational skills, word recall and even depression. If you ask any medical professional who sees patients with PD, they will tell you to the best of their abilities what a patient is experiencing based upon education and tools as well as observing physical and mental examination. So the next time your movement disorder specialist says, “I understand what you are going through.” You can say, “You can’t possibly understand unless you walked a mile in my shoes!”

Parkinson's doesn't discriminate

I have met many neurologists who actually have PD. I find it very astonishing that so many neurologists and medical professionals that have been diagnosed with the very disease that they spent a career attempting to treat. Actually, PD doesn’t discriminate. PD breaks all ethnic, socio-economic, gender and even age barriers. From my experience, anyone is susceptible to PD and yet the cause remains aloof. I am sure there are clinical studies/research that looks at these factors; however, I believe that PD does not discriminate as much as science indicates. For example, is a farmer more vulnerable than a corporate executive or the teacher more than the stay at home mom? I suppose these answers will come eventually but for now, I continue to advocate, educate and wage war in my own personal battle with PD.

Try on someone else's shoes

So again I ask the question, do you have to have PD to write about it? The simple answer is no but to really understand what any one person is experiencing is to ask them. Go ahead and put those shoes on and walk around a bit. Get a feel for the rigid joints, tired muscles, sleepless nights, shaky days, constant pain. Occasionally you will find that you can’t walk at all much less move on command. Many books, pamphlets, and PD 101 guides have been written by very credible people and organizations dedicated to assisting the PD community with information about tools, data and professional help. However, as the saying goes, “consider the source.” Just as there is good information, there is some misinformation as well. I encourage everyone looking for information about PD to do so with discernment. Don’t be afraid to run it by your doctor first.

Still learning

I’ve written a book about PD, but I’m still learning. My wife and I have even co-authored a book about PD because we felt it was important to get information about not just our walk with PD but how everyone’s journey is different. Hence the “walk a mile” in his shoe reference. A brief explanation of the book reveals that it is not just a personal perception of how we feel and have experienced in living with PD but a resource guide with input from others who have been living with PD also. In the back of the book is a resource guide with contact information on credible sources of important information, sort of like an A to Z on everything you wanted to know about PD. There are other great books published with really valuable information about Parkinson’s and living a better, healthier life. I urge you to check these out and be an overcomer in your battle with PD. I also encourage your comments and questions on ParkinsonsDisease.net and we will respond. Keep fighting!