I lost a friend this week. I met Barry in Boxing class about 10 years ago. We hit it off and often paired up to box together in class. We were both active in the local Parkinson Foundation’s annual Moving Day Walk. For several years we were the #1 & 2 top fundraisers each year, which led to a lot of friendly trash talk about who was #1 at any given time.
When the Pandemic hit, we lost track of each other for a few years, until Ping Pong for Good (now NeuroPong)started up in Los Angeles. We had as much fun playing ping pong as we did boxing. But Barry had changed. He had lost weight, and his hair was now white. He just did not look healthy, except that he still had a wicked Ping Pong serve. He wasn’t attending as frequently as before. He was clearly going downhill after battling PD for so long.
The last time I saw Barry was at the beginning of April in the parking garage. I was leaving and he was just arriving for the second ping pong class of the day. He was now using a walker and traveling with a caregiver, not his wife. His usual smile was gone. I asked how he was and he told me that he was not doing well, he hated the walker and complained about a few other things. I honestly don’t remember much of the conversation because I was so upset by how he looked and sounded.
A week later I heard that Barry had Stage 4 Pancreatic Cancer, the same awful disease that my father had. 4 weeks later, Barry passed away. He will be missed by all of us. His big smile, his wicked ping pong serve and great sense of humor endeared him to all of us who knew him. May his memory be a blessing.
They say we die with Parkinson’s, not from it.
We hear it over and over: we die with Parkinson’s, not from it. That may be true, but I think that because we blame pretty much every ache and pain on Parkinson’s, we often ignore symptoms until it is too late. We don’t want to call our doctors every week with the latest complaint. We don’t want to be a pest to them and our families because of some vague PD symptom. So at what point do we finally call the doctor to make sure whatever is not going away is not going to kill us? Who is going to advocate for you if you cannot do it yourself because of pain?
In January 2009, I was diagnosed with both Breast Cancer and PD in the same week. My oncologist, upon hearing that my father had Pancreatic Cancer, ordered genetic testing even though my mother, who had breast cancer 3 times, had tested negative for the BRCA genes. 3 weeks later, my doctor told me that I have the BRCA2 gene mutation, which also puts me at higher risk for Pancreatic cancer.
I was fortunate that she insisted on testing me. I now go for a special MRI every two years to check my Pancreas. So far, everything has been fine and I thank my doctor every visit for having had me tested. The biggest problem with Pancreatic Cancer is that by the time you have symptoms, it is too late. The good news is that the MRI can pick up cancer very early before it becomes symptomatic. The treatment is easier and much more effective. And there are even some reports of a cure for Pancreatic Cancer.
Now if they can only find a cure for Parkinson’s, too……….
Next Friday, I head for Phoenix and the World Parkinson Congress. Look for me if you are going. I will have a table along with other organizational partners of the WPC, so you might find me there at lunchtime every day. I will be posting photos and information daily.
Have a great week
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