A Wild Ride!

Parkinson's Disease (PD) is the second most common neuro-degenerative disorder after Alzheimer's disease, with a prevalence of 0.35-3%, as the age advances. Parkinson's Disease is a slowly progressive brain condition which manifests with both motor and non-motor symptoms. The cause of Parkinson's Disease still remains uncertain through appears to be complex. Several genetic factors and genes have been identified implying that there must be some genetic predisposition, which under environmental influences lead to damage to the dopamine-producing deep nuclei (brain chemical) of the brain. Dopamine helps with transmission of brain signals in order to maintain smooth control of movements [and body functions] and when dopamine levels drop, people start experiencing symptoms of PD. The pathological hallmark of PD is called Lewy body, which are aggregates of proteins called alpha synuclein. 

There are certain factors that can increase the risk of developing Parkinson's Disease, such as age (risk increases with age), profession (contact with chemicals), race (white) serious head injury(severe enough to lose consciousness/memory), gender (men), living situation (rural/farmland/well water use), etc.

The majority of patients are classified as idiopathic (unknown cause) PD. In a small number of cases (5-10%), there is a family history of PD. The genes that are potentially implicated in the development of PD are called PARK genes, which can be transmitted in an autosomal dominant or recessive manner. [Parkinson's patients are sometimes called PARKIES because of these genes].This suggests that additional research is required to identify additional unrecognized genes.*

I've included the above excerpt from this month's PANC newsletter, because I think it is a good description of what Parkinson's Disease is. It is a difficult disease to describe because of the multitude of symptoms and the diverse ways it exhibits itself in each person. We've been on this journey for more than 23 years, and yet I still have a tough time describing it to people who ask. Every day PD changes. Some days Jamey cannot walk or speak well, and other days he can stand straight and even hit baseballs at the batting cage! Crazy!

Unless you are dealing with PD, or know someone who is, you might not realize, in addition to movement disorder, PD effects body temperature, bowel performance, urination, sleep, swallowing, breathing and vision . All of these things are dictated by the chemical dopamine, so the loss of such, creates erratic body function. And that erratic function makes it difficult to plan your day, or for that matter, your hour or minute!

The unpredictability of PD is troublesome enough for us, but strangers find it disconcerting as well. People frown at Jamey when he gets up from his wheelchair and walks (less and less often, now) because he appears perfectly capable of walking all of the time. Sometimes he has no tremor or other tell-tale symptom. When he is stuck and cannot move, people behind him get annoyed that he is in their way. I believe it is because people are ignorant about the disease. Even though PD is the second most prevalent disease, there is still so much unknown about it. When we are ignorant about something, we tend to get frustrated because we can't identify. It's that way for all of us. We can't completely understand another's plight unless we are walking in their shoes. And even then, there is no guarantee we will understand. We're NOT them.

With that said, I know that there is a reason we are on this journey, and I am thankful we are able to help others along who may be going through a similar situation. It does our hearts good to know we have possibly helped someone else by sharing our experiences or what works for us. We're all in this together, even if our diseases don't exhibit the same way.

This is a minute to minute challenge. Are you up for it?!


*PANC Parkinson Association of Northern California, The Parkinson Path Newsletter, Fall 2019. www.panctoday.org.