People living with PD

Care Partners

Every day really is a gift.  I was diagnosed 51/2 years ago.  I was walking down a beach and noticed my arm was stiff and still.   I  of course checked the internet to find out what was wrong.  But it is not that easy to get diagnosed.  The first neurologist I saw took a CT scan of my brain since my grandmother and brother had died of brain cancer.  I was lucky, no cancer.  After he told me that he was 95% sure of the diagnosis, he said; " there is not much you can do except exercise and take medicine ".   I went to see all the top Neurologists but they seemed to only be interested in research.  Don't get me wrong, I am thrilled they are devoted to research but we also need "people Care".   I attended the Parkinson's Congress in Montreal two years ago. It is held at a different place in the world every four years. Over 4,000 people came. It is unlike any other health event I have attended.  Classes are taught by Doctors and researchers.  But the big difference is the interaction between the people with PD and the medical professionals. For many years patients had complained about pain and we were told by the doctors that it was not caused by PD.  Well guess what?  By the end of this conference, the topic was pain and PD.  It is an amazing feeling when you are finally heard.

I quickly found what works for me.   I just returned from Zambia.  I travel and sew up a storm.  I choose not to become a victim to this disease.   

This is what I do:

1.  I Stay  off the internet  & avoid meetings. I became so depressed reading about how bad my future was going to be.
2.   I Read uplifting books like,  Michael J Fox's books.
3.  I tried something new to engage my brain.   I started playing RummyQ and Five Crowns.
4.  I Spend  more time with my family and friends.
5.  I started sewing Quilts, ,Travel Kits, Baby Bundles and more.  It relaxes my mind, make me feel like I am accomplishing something  and I have something to give to the people I love.
6.  I learned to ask for help not just offer my help.
7.  Communicate my  feelings on good and bad days.
8.   I learned to meditate.
9.  I found weekly massages ease my stiffness and pain.
10.  Diet and exercise.

As a person with PD I can only speak to my needs and concerns.  Like most people, I am independent and do not want to feel like I am a victim of a disease.  But it is up to me to balance  my need for help with my need to remain independent. The people who love us, want to help without hindering.  So I tell everyone about the things that are difficult for me.  Why I am having a hard time.  Often they come up with a suggestion that helps.  It also helps if the people around me have a sense of humor about PD.  I think by now my family and friends are used to my little jokes.  When painting brick I told them I was perfect for the job because I could get into every little crevice as my hand shook.
  I know it must be a struggle for a care partner to know what to do.  For me, I want people to expect that I can do almost as much as always, but be ready to catch me if I fall.  Literally!  On our recent trip to Zambia, my three daughters treated me like royalty.  But they knew that the secret to my long days was getting enough rest, physically and mentally.  I always need down time to sew or play cards. These activities are relaxing to my brain.  I am fine with two other people but more than that tires my brain.

As a care partner, do not be afraid to offer assistance.  My daughter Jennie bought a beautiful handmade cane for me.  She told me even though I did not need it then, it might come in handy one day.  Well by the time we had gone thru 3 security checks in South Africa in the transit area of the airport as we were transferring from Zambia, I was thrilled to have the cane.  Once at the gate when security asked everyone to get up once again for yet another security check, my daughters drew the line and pointed to my cane.  They said I must stay in my seat, so I was checked where I was seated.  Good thing I had my cane.  Good thing I have a wonderful family.
The most important message is every person with PD is different. Every day with PD is different.
So expect the unexpected and still enjoy your life to its' fullest.