This post was written by my husband, Zack, in regard to his sister, Andrea, who is suffering from Parkinson’s. I have known Andrea for over 10 years now, and have seen how this disease has affected her life. The paragraphs below are an inside view on what it is like to live in her shoes. The good news is that there is a very good chance that her quality of life may be able to change drastically with your help…
In 2005, at the age of 34, Andrea noticed an involuntary tremor in her left pinky finger. At the time, it seemed relatively insignificant. As time progressed, her whole left side became extremely weak and her left foot stopped lifting when she walked. Her step seemed to get smaller. If she did not focus on lifting her left leg, she would trip. At the same time, her left shoulder kept falling out of its socket, rendering her arm useless. More symptoms followed, including fatigue and insomnia, muscle and joint pain. Then came the dreaded shakes.
After 4 years and many second opinions, she was finally referred to a movement disorder specialist, who diagnosed her with Young Onset Parkinson’s Disease. As the unforgiving disease progressed, it began to affect her whole being. Her thoughts were scattered and cloudy. It became hard to focus. Her voice seemed to get quieter and quieter. Her handwriting got smaller and smaller. She frequently lost her balance and falling down stairs became commonplace. Due to Hypokinesia, or “Stone Face”, her once prevalent smile had all but disappeared and she avoided people, fearful that someone would see her shake, twitch, trip, or fall. Someone once asked her “If you could have any superhero power, what would it be?” Her answer was invisibility.
Andrea first heard about Deep Brain Stimulation (DBS) on TV. It’s a neurosurgical procedure, involving the implantation of a brain pacemaker, which sends electrical impulses to the brain for the treatment of movement and affective disorders. It was approved by the FDA in 2002 for Parkinson’s and has since been deemed a miracle surgery by its advocates. Initially, Andrea was skeptical and intimidated at the thought of implanting something foreign in her body. As her symptoms worsened, she came to realize that this may be her only hope for recovery. Her Doctor agreed.
With this surgery comes the promise of a new life. Her shaking and involuntary movements will likely cease, making it much easier to walk (and even run) again. Many patients also experience a reduction of muscle and joint pain. It will make it physically easier for Andrea to smile again, something most people take for granted. There are so many activities Andrea would love to do again – from a simple walk through the park with her husband and two daughters to an endless hike in the woods without worry that she will be unable to make it out alive. She used to love kayaking with the sun on her face. She dreams of regaining her confidence in social situations, no longer being afraid of embarrassment. In her own words, “I’m 43 years young and I’m tired of feeling 95. I’m excited to continue my journey in life. I hope to climb the highest mountain and scream as loud as I can that I won’t let this disease define me and take my soul. I want to be free again.”
Unfortunately, DBS is not an inexpensive surgery. It is quite costly, and Andrea is lucky to have her insurance cover all but $3000. Still, it is $3000 that she simply does not have. This is where you come in. We need your selfless donation to help Andrea get her life back. Please help us by contributing whatever you can afford. Andrea and her family will be eternally grateful.
-Zack Notes
We appreciate all of those who have helped Andrea to fund her surgery so far, and we are more than halfway there to reaching our goal. If you can find it in your heart to help, we would be extremely thankful! It would mean the world to Andrea.
Here is the link to make a donation.
Thanks and hope you are all enjoying your week!
XO,
Gina