Not Your Grandfather's PD

April is Parkinson's Awareness Month, a time to shed new light on this jumble of symptoms that we label a "disease." If you ask people what they know about PD, many will say that it is a disease that old men get that makes them shaky, stiff and unable to walk. That may have been true for most people with PD years ago but things are changing.

The average age of onset is 60 years old and according to the Fox Foundation, 10% of PWP are diagnosed before age 50. So much for it being an old person's disease. Sixty thousand new cases of PD are diagnosed each year and men get PD at a rate of 2:1 compared to women. That means that there are a lot of both
men and women suffering with PD.

Although no cure is forthcoming, research is being done and treatments are being developed to manage the symptoms and slow down the progression of the disease. Yes, research is showing that it can be slowed down! Studies are now showing that exercise can slow the progression of PD. We now have many medication optionsand for some of us, even surgical options to reduce symptoms.

We have work to do to stay healthy while we wait for that ever elusive cure but at least we have options available to us. For me that means hope...for a higher quality of life, for a full future, and yes, someday, for a cure. This is no longer my grandfather's PD, it is mine and I will fight it with all I have.

Comments

Diagnosing with Compassion and Hope

My hackles are raised, my feathers are ruffled, my … I’m not sure I can find the words for how I am feeling. This morning, I read a recently published article called “ Delivering the diagnosis of Parkinson’s disease-setting the stage with hope and compassion.” I am not upset that the article was written. I am glad that the authors have brought this to the attention of others. I am upset that it needed to be written. I just think it is common sense that when someone is given a life-changing diagnosis, it should be given with hope and compassion. The authors note that some say the moment of diagnosis is “almost akin to a traumatic event such as the loss of a loved one.” Of course it is! The person receiving the diagnosis is losing their future self. Everything they thought their life would be from that moment on has now drastically changed! I would count that as traumatic. I was...

Missing Tom

I recently lost a good friend. Never would I have imagined that I would become such good buddies with a man old enough to be my dad. I met Tom over seven years ago in a Rock Steady Boxing class. I entered class as a shy, teary-eyed, newly diagnosed mess who didn't like to sweat and had never boxed. Tom quickly took me under his wing, introduced me to the movers and shakers in the local Parkinson's community and eventually recognized a potential in me to further help the community. Within a year, with the encouragement of Tom and others, I became a certified Rock Steady coach. Tom and I would go to the same conferences and seek out the newly diagnosed. Ever the salesman, Tom would ask me if I "closed the deal," meaning, did I convince someone to come to an exercise class or attend a support group. Tom knew the benefits of attending these groups and he wanted everyone else to know also. He just wanted everyone to live the best life possible, even while living...

Birds of a Feather

The saying, "Birds of a feather flock together," dates back to at least the mid-16th century. In nature, birds are known to stick together in groups with their own feathered kind for protection. There is safety in numbers. Larger flocks are safer from predators. The saying has come to mean that people with similar likes, tend to band together. As a society, we form many different groups based on similar interests or qualities. I find the saying to be relevant also in the Parkinson's community and I am sure it is true for other conditions as well. I am more comfortable hanging out with others who have Parkinson's. They get it. No one else truly understands what it is like to live with Parkinson's except those living with it. Care partners probably come the closest to understanding what it is like, but they also have their own flock. One doesn't truly know what it is like to care daily for someone with Parkinson's unless y...

Rock Steady Fighter

Search This Blog