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.

Living in the Moment

October 14, 2018

Even before I was diagnosed with Parkinson's, I think I was always one of those people who was worried about tomorrow.  What is going to happen next?  Will things go according to plan?  I needed everything to be in my control.  Ha!  The person that said we plan and God laughs was right.  It seems that very little is in my control.  God has a plan.  Darned if I know what it is, but I know it is good.  I heard a quote from writer and producer, Norman Lear recently.  He said,

"We don't pay enough attention to the words overand next.  When something is over, it's over and we are on to next. If there was a hammock between over and next, it would be living in the moment."

When you have a chronic illness, whether it be PD, or something else, it can be hard to live in the moment.  Stories of what the future may hold can be scary and the unknown is downright frightening.  I think the key here might be not worrying about the unknown.  We don't know what the future will be.  It just might be better than we ever imagined.  How awful to spend our time imagining the worst when it may never come to be.  One of my favorite singer/songwriters is Jason Mraz.  In his song, Living in the Moment, he says,

"I will not waste my days

making up all kinds of ways

to worry about all of the things

that will not happen to me."

If you have never heard the whole song, it is definitely worth a listen.  I'm going to try harder to not think about nextand try to take in all the nowthat I can.  I know it won't be easy but challenges stretch us and make us grow.  This moment, right now, is enough, and I am going to live in it the best I can.

Lyrics to Jason Mraz's Living in the Moment

Happy Anniversary

Aug. 30, 2018

Anniversaries are usually happy and joy filled.  They are also times for reflecting back over the past year.  Well here it is.  I am coming upon the second anniversary of my PD diagnosis.  That day two years ago was anything but happy and joy filled.  It was terrifying and fear filled.  

My first year of PD was a very bumpy rollercoaster with many more out of control twists and turns than I would have liked but this second year has leveled out and there have even been some very happy high points.

During this past year, I became a certified Rock Steady Boxing coach and  a Parkinson's Ambassador.  I also started this website and blog. I have embarked on a mission to let others know that having PD isn't the end of the world and you CAN do something about it.   I did not choose to get on this rollercoaster but I am on it anyways so I am going to make the most of it.  Although I am still fairly early on in my journey, here are a few things that I have learned (so far) along the way:

You can only help others if you help your self first.  Self-care is not self-ish.

Smiling feels awesome!  (Not only is it contagious but it is really good for your facial muscles!!!). Try it right now...see, don't you feel better?

Hard work is hard work!  Do it anyways, you will feel better after.

Hold on tight.  Life with PD is bound to have its speed bumps.  Slow down when you need to.

Build a tribe of support.  Help others in your tribe when you are able and don't be afraid to let them help you.

Food is fuel and food is medicine.  Treat it as such.

I always say God makes cool stuff...and he made me, so therefore, I must be cool. (My kids may not agree with this one).   I will embrace my cool factor by being silly and having fun and not taking life too seriously.

Every day is a gift.  Treasure each and every moment.

Something Needs to Change

June 22, 2018

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.

Not Your Grandfather’s PD

April 4, 2018

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 bothmen 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 optionsto 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.

Fight Like a Girl

March 9, 2018

International Women's Day

 Men are diagnosed with PD almost twice as often as women.   I get the honor of being in this minority of females.   I never chose this group.  I had no choice.  I do have the choice in responding to it.    I choose to not sit back.  I choose to educate myself and others.  I choose to not  be a victim.

I choose to count the blessings I do have in spite of my PD.  I choose to fight.  I now know many women with PD who join me in this battle and they are mighty warriors.  On this International Women's Day, I recognize them and cheer them on.  Fight like a girl ladies because girls are strong and powerful! I am honored to fight beside you.

There are Heroes Among Us

Feb. 22, 2018

Today, I learned about a hero. His name is Tony and though his  name may never be a household word and you may not recognize him on the street, he is a true hero in my book.    Today he is undergoing experimental DBS Plus surgery.

We live in an incredible time of medical advances.  Every day scientists find new treatments  and sometimes even cures for horrible diseases.  Along that journey, real people are volunteering to try out these treatments before they are proven to help or not.  These heroes are real folks like you and me suffering from a plethora of illnesses.  Today, I thank God for Tony and for his courage.  I thank God for those who have been there before him getting poked and prodded in the name of research.  I thank God for the doctors that are in the middle of the battle with us and refuse to give up.   Tony, you are a brave, valiant warrior.  You have a prayer warrior in me that is forever thankful.   I pray that if the opportunity ever presents itself, I can be as brave as Tony.