Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles. Tricia Low had pulled together the group to discuss issues related to Women with PD. Tricia is amazing. Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.
The first thing Trish noticed was that her handwriting started to look like her father’s. She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts. Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women. So she never thought that she would get PD. Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.
First she went to a local neurologist. He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s. The first doctor was not very positive. He talked to her husband, not to her, in spite of the fact that she was a nurse. He did not give her any information, so she began to look elsewhere.
She first went to Huntington Hospital, which was filled with “old people with white hair”. There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it. The first doctor said she would get used to it. The second doctor disagreed, so she changed doctors. He took her off the Requip and made some other changes.
In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley. The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor. So again she looked for another doctor. She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.
It took about 5 long years to finally get to the right doctor, which has made a huge difference.
Trish says there are 4 things we must do to cope with PD:
- Keep a positive attitude
- Exercise every day
- Advocate for yourself
- Always check for the latest information on the internet
She is always trying new things. She goes dancing, she boxes to get out the aggression. She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays. She is a religious person and prayer is very important for her. Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better. Its a great way to keep going. “I always tell people that I am a pretty package, but a mess inside.”
What makes her story so unique? She did not expect to be fighting two different diseases at the same time. She has had 4 DBS implants because she broke the first set! She fell off a step-ladder and snapped the wires in half. She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.
Her advice to the newly diagnosed: each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you. Exercise every day 30 minutes. If you believe in God, or some other higher power, get close to them.
Finally, Trish says “what keeps me fighting is I still have a purpose to my life. One of my passions is ‘Caring for people and helping them along the way.’ So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD. I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my