Parkinson’s Awareness Month

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?

 

PD Buzz

Every town has its own vibe, its own groove, its own"buzz" so to speak.  I am fortunate enough to live in Orange County, California where not only are the beaches outstanding, but it has so much going on.  It is definitely an area rich with resources for its residents.

Among these resources, are lots of activities for people with Parkinson's Disease.  When I was diagnosed with PD, I was not made aware of all that was available locally to help me.   I'm now 2 1/2 years post diagnosis and see the same thing happening to others recently diagnosed.  What a waste to have all this good stuff and not know about it!

Well, we PD warriors are a hearty breed and when we see a problem, we like to fix it.  A small group of us got together and the result of our collaboration is PDBuzz.com.  Our goal is to have one site that lists all the PD resources available in the county: support groups, exercise classes, rehab services like PT and speech, conferences and more.   We have experienced the benefits of being plugged into the PD community and want everyone else to have the same opportunity.  PD can be a tough journey  and no one should have to go it alone.

We are still getting the word out  about PDBuzz.com  to doctors and other organizations but so far, the response has been outstanding.  Doctors in the area have expressed that they don't have the time with their patients to inform them of all that is available.  Organizations giving educational conferences want you to attend.  They want to get the word out to the people with PD, their families and their caregivers.  We even heard from someone out of town that will be coming to visit for an extended stay and  was excited to know what is available here.  What an unexpected delightful result of our work!

If you live in the OC area,  check out the site. Consider taking advantage of some of the activities and please let us know if there is anything PD related in OC that we are missing.  If you are from somewhere else, I encourage you to seek out resources in your area.  You are not alone and we are better together!

We are people with Parkinson's helping people with Parkinson's.

Oh Parkinson’s

December 10, 2018

My mind goes a little crazy when I can't sleep.  I bet many of you can come up with more verses.  Leave a comment and let me know what you've got!

Oh Parkinson's

(Sung to the tune of Oh Christmas Tree)

Oh Parkinson’s, Oh Parkinson’s

You must have got it wrong

Oh Parkinson’s, Oh Parkinson’s.      

I’m not weak, I’m strong.

My steps might freeze, my hands might shake

It’s 3 am, I’m still awake

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long. 

Chorus 

When I wake up, I’m slow and stiff

Can’t smell my food, no not a whiff

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

I cannot sleep all through the night

Those dreams they give me

Such a fright.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You want my voice, you want my smile

If I give an inch,

You’ll take a mile.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

 First it’s my hip and then my knee,

You think you’ve got the best of me

But Parkinson’s, oh Parkinson’s

I’ll fight you all day long. 

Chorus

You make me twist, you make me jerk

I can’t predict when meds will work

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You must think you’ve beat me down

But I’m the toughest one in town.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long!

 

christmas-tree

Gratitude

November 24, 2018

The Thanksgiving holiday has come and gone.  I started it in the kitchen fairly early in the day.  My first thought was, "How come everyone in the house is sleeping and I am chopping vegetables?"  Quickly, my second thought became, "I am so fortunate that I can chop vegetables."  This season has brought a host of tragedy with it.  In California, there are many who have recently lost family members and  homes in the wildfires and there are many families that lost loved ones in the recent Thousand Oaks shooting.  I am blessed that I have a kitchen and  that my home  will be filled with family and friends this season.

After contemplating my many, many blessings, I decided that my upcoming Christmas season will be filled with giving and not getting.  When I look back over the years, we certainly gave to charities but I never made it a focus  in our home.  I didn't get my kids involved in it like I wish I had.  If I had to do it over, I would find a handful of charities that meant something personal to my family.  I would research them with my kids and have them decide how we wanted to be involved.  Would we  donate money or actually donate our time and talents (or do all three)?    I think kids learn by doing and seeing.

This year, I have personally seen what some non-profits do for people.  I have been the beneficiary of resources from institutions like the Davis Phinney Foundation and the Parkinson and Movement Disorder Alliance.  I have attended their conferences and ordered their materials (at no cost to me).  I am praying that in the future, I reap the benefits of a cure found by the Michael J. Fox Foundation (please let it be soon!)  They could not do what they do without the generosity of others.  Recently, I  learned about the Parkinson's Wellness Fund (PWF).  Parkinson's is an expensive disease to treat.  Fortunately, I can afford many of the available treatments although I know many that cannot.  The PWF helps provide out of pocket expenses to those who can't afford it.  Even better, the PWF has agreed that any donations designated for Orange County, will be spent in Orange County. This is personal to me.  It will be nice to see those funds being used locally.

I hope the upcoming season brings you all health and happiness.  Please consider being a giver and not a getter this season.  Find something that causes your heart to melt and get involved in it.  And don't forget the littles in your family.  You may start a tradition that has benefits for years to come.

Looking Through the Raindrops

November 4, 2018

I spend lots of time reading about Parkinson's treatments.  After all, my quality of life depends on it. It's like looking through a rain streaked window.  Everything is blurry, but once in a while, you catch a glimpse of something clear and you get hopeful that the sun will break through and make everything clear.  Then more rain falls, and that glimpse disappears and we wait for another peak of clarity and get our hopes up again.

In my head, I hold on to the clear pieces that I have seen and try to fit them all together.  In my head, the researchers have squeegees and are trying to fend off the downpour of toxins, bad genes, head injuries and  whatever else they think might be causing PD. (Aren't you glad you don't live in my head?  It can get pretty weird in there!)

As the population ages,  more and more people are being diagnosed with PD and the storm is growing. We need bigger squeegees or more window washers and they both require more money.  Either way, it's going to take the cooperation of many to see the whole picture.

To my fellow Parkinsons warriors, keep looking out the window and hold on to each glimpse of clarity that you see through the raindrops.  I'll be praying for a rainbow.