Skip to main content

Parkinson's Awareness Mon

 
Currently, approximately 6 million people are living with Parkinson's disease (PD).  This is up from 2.5 million in 1990.  Scientists think that this number will increase to 12 million in the coming generation.  Although, treatments and medications are getting better, it looks like we are still quite a ways away from a cure.  So what can you do about it? It is a giant problem.  Is there some way you can help?  Whether you have PD or not, there are things you can do to improve the lives of those living now with PD.

IF YOU ARE LIVING WITH PARKINSON'S:

Fight back.  When that magic treatment or cure does come along, you need to be as healthy as possible so do what you need to do to fight your PD.  Exercise, take your meds if needed, eat right, stay educated and involved.

Volunteer for clinical trials.  Clinical trials vary. Some require  a lot of effort.   Some don't take much effort at all and can be fun and educational. Some can be interviews on the phone or online.  Many require you to visit a local medical center.  Some even pay you for your time. Someday, someone will be part of the trial that results in a cure. Will it be you?  Unfortunately, without volunteers, not much will get done.  You can look for trials on the Fox Trial Finder or at ClinicalTrials.gov.  Check with your neurologist also.  They often know about the local clinical trials and can advise you whether you might be an appropriate candidate or not.

Educate others.  I don't know about you but when I tell people that I have PD, I want understanding, not pity.  To gain understanding, people need to learn about it.   I was surprised to find out  that many, maybe even most, people don't know much about Parkinson's or they are mistaken in what they think it is.  Encourage others to ask questions and take the time to answer them.  I often hear people say they have a relative with PD but knew nothing about it.  You may be the pebble in the pond that causes ripples far and wide.

IF YOU DO NOT HAVE PARKINSON'S:

Educate yourself.  As stated above, people with PD want, and should receive, understanding, not pity.  There are plenty of good websites out there to help answer your questions.  Try the Michael J. Fox Foundation, The Davis Phinney Foundation, or the Parkinson and Movement Disorder Alliance.  I have found all these organizations to be accurate in their reporting and proactive in their efforts to defeat PD and help those living with PD.

Volunteer.  Volunteering is good for the soul...and much more.  When I take the time to help others, it helps me.  I get all warm and fuzzy inside (ok, maybe that's tremors sometimes but you get the picture).  Do you enjoy exercise? Volunteer at a local Rock Steady Boxing or other fitness program for PD.  You don't have to make a huge time commitment. Do what you can.  Are you able to drive and have a little bit of time?  Many people with Parkinson's have given up driving and are stuck at home.  You could drive them to a support group once a month, help them grocery shop or just go out for coffee.  Loneliness is a key factor in determining the progress of Parkinson's.  By spending a little time with someone, you could actually help them feel better and cope better. Caregivers can also use a break so maybe you could fill in so they can have a few hours to themselves.  Have only a few hours a year?  Volunteer at one of the PD events in your area such as a walk or other fundraiser.  They are always thankful for help. Have some professional or personal experience with PD?   So many organizations need your help.  Consider serving on a board or maybe even organizing or running a group.

Donate.  Unfortunately, it is a reality of life that not much in the research world gets done without money.  PD is also an expensive disease to have.  People often go without much needed therapies and treatments because they can't afford them.  One of my favorite organizations is the Parkinson's Wellness Fund which helps people with Parkinson's afford out of pocket expenses related to their PD.  There are many other organizations also.  Don't forget to do your homework and check out any charity before donating.  You can check out many of them at Charity Navigator.

Stay healthy.  The statistics are bleak for the prevalence of PD in the future.  You never know when or who it will strike.  I never expected it to hit me.  Thankfully, so far, I am in good enough health to hit back. You can better your odds of staying healthy by protecting your brain from the inside and out.  Get your exercise, eat a healthy diet, avoid pesticide and other toxin exposure and take precautions to avoid head injury.  If that means wearing a less than stylish bike helmet next time you go for a ride, so be it.

I pray that this is the last Parkinson's Awareness Month we ever need to have.  I pray every day that the cure is right around the corner and that future generations never have to deal with PD.  If that cure doesn't happen this year, I'll be spouting off again next year at this time. Until then, it's Parkinson's Awareness Month 2019.  What are you going to do?

 

Comments

Post a Comment

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...
Post a Comment
Read more

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...
Post a Comment
Read more

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...
Post a Comment
Read more