Skip to main content

Something Needs to Change

 The research is out there.  The case studies are available. Exercise helps those with Parkinson's.   In my opinion, it isn't just beneficial, but it is necessary if you want to live a full life with PD.

I know the docs are busy but this isn't brand new research and those being  diagnosed need to know that exercise will help them and the sooner they start, the better.  It is crucial that the word gets out to the patients...those who live day in and day out with this disease. They need to know it on the day of diagnosis.  How do we get the word out if the doctors aren't telling the patients?

It is  left up to the patient and/or care partner to do the research and find out for themselves.  On top of dealing with a life changing diagnosis, you now have to do your own research, be your own advocate, and find your way to better health on your own.

I wish I could personally appeal to every neurologist out there and show them the research and show them what I have done for myself and tell them what I have seen in others.  I don't know if they would even listen or believe it's true.  Maybe we need to bring Parkinson's patients into the medical schools and nursing schools to bring awareness and show them real living examples of the benefits of exercise.

If you sense frustration in my writing, it is because I hear of patients  who have been living with PD for months or sometimes years and are not aware of how they can help themselves.

I'm not sure of the solution to this problem but we need to work together to figure it out.

Comments

Popular posts from this blog

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...