There’s something about Tonya.

I met Tonya Walker about 3 weeks ago. She was hosting a very elegant affair fuzing fashion and art, raising money for the Michael J Fox foundation. Tonya like me has Parkinson’s.  We are on a mission…..our mission is to do what ever needed to raise money, raise awareness and raise the roof to find a cure for this debilitating menace of a disease.

We bonded in our mission but most important we bonded in friendship. Tonya will be the voice in my ear encouraging and inspiring me as I climb Kilimanjaro to raise money to find a cure.

Here is Tonya’s story in her own words.
I was officially diagnosed with Young Onset Parkinson’s Disease (YOPD) when I was 34 years old. YOPD affects each person differently. My symptoms began as fatigue, slowness, rigidity and lack of arm swing on the left side of my body. Over the years, the disease has progressed, and I now experience those symptoms, as well as tremors, on both sides of my body.

Brain surgery Part 1: People often tell me how brave I am to undergo Deep Brain Stimulation (DBS). I would not say I’m brave. The disease just became so debilitating that I was ready to do whatever was necessary to get my life back. In August 2013, I was up to 16 pills a day before my first DBS procedure. Not all of the pills were to address the symptoms of the disease. I had to take not only enough pills to function, but also pills to counteract the side effects from the pills I needed to take to function. The treatment by medication is truly a vicious cycle.

A lot goes into my every day functioning “behind the scenes” that most people never see. I try to be as “normal” as possible -whatever that means. Only a handful of my closest friends and family have witnessed how crippling Parkinson’s can be for me.

As a Person With Parkinson’s, my life is unpredictable. I never know when my body will turn into a train wreck in a matter of minutes because I ate something that interferes with the absorption of the medicine, I got stressed, or I took my medicine a little late. Some days my functionality randomly falls apart for reasons I will never know or understand.

To give you a little insight into pre-DBS life, here is an excerpt of a journal entry that I wrote before my first procedure:

After having the summer off, our house was in full swing this morning. My son started his first day of kindergarten. I started my first day of lectures. It does not seem to matter how much planning is done the night before, inevitably something goes awry. I will spare you the details, but we were running behind schedule which created stress.

Stress is bad for anyone, but it is particularly bad for a person living with PD. Stress in a person with Parkinsons (“PWP”) triggers an increase in symptoms and a decrease in the efficacy of the medicine.I spent the morning rush praying my feet would not turn. After all, I did not want my son to spend the morning of his first day of kindergarten waiting for “Mommy’s feet to be better.” By the grace of God my feet did not turn. I timely delivered my precious cargo to school and made it to my office on time. Success!

As a PWP, my life is unpredictable. I never know when my body will turn into a train wreck in a matter of minutes because I ate something that interferes with the absorption of the medicine, I get stressed, or I took my medicine a little late. Some days my body turns into a train wreck for reasons I will never know or understand.

To help you better understand the improvements to my life after DBS, below is a journal entry that I wrote shortly after my first surgery:

To give you an idea of how the disease affected me here are some of the little things that I can now do, but was unable to do prior to surgery. The little things that I will never again take for granted:

– the ability to hug my husband and child with both arms instead of using only the right arm

– type with both hands. It is amazing how much more productive one can be when you can use both hands

– similarly, I was able to type a text message using my left hand. Also much faster to text with both hands.

– waking up and being able to get out of bed when I want to – not waiting for the meds to kick in so I can walk

– having the ability to sit/lie still. Never underestimate the ability to sit still.

– having a pedicure whenever I want to instead of timing it around my medicine schedule. Even when I tried to time it right, my foot would move so much it was nearly impossible for the lady to paint my toe nails.

– the ability to run around with my won, walk with him while he rides his bike around the neighborhood or do any other physical activity he wants me to do with him without having to wait on my body to cooperate.

Of course there are many other things, but hopefully this list will give you an idea of how life-changing this surgery has been for me and my family.

As you can tell from my journal entry shortly after my first brain surgery, DBS is a miraculous treatment. Nonetheless, it is not a cure. It is merely an improved form of treatment, coupled with the medication. There is no cure for Parkinson’s. There is no treatment that slows the progress of the disease. The disease continues to attack my body.

On April 9, 2015, I had a second DBS procedure to help manage the symptoms on the right side of my body, which progressed since my first procedure in August of 2013. I am optimistic about the long-term benefits this second procedure will provide.

In the meantime, I refuse to sit idly by and wait for a cure. My husband and I, much like Margaret, are on a quest to bring awareness to the disease and raise as much money as possible to fund research for a cure.