One of my best friends Gina is the sweetest woman in the world. She connected me with her mother in law, Toby Katz, who writes a column for the Parkinson's Disease Research Society. Toby was diagnosed with Parkinson's about four years ago. Her voice inspires patients throughout the country! She wants to be a sounding board for patients to share their feelings, concerns, experiences and fears. Her voice is so strong that it relates to everyone undergoing a difficult time. Enjoy Toby's voice!
Tell Me How You Really Feel
By Toby Katz
Hi, my name is Toby Katz and I am a Parkinson's patient... I am very lucky. my symptoms are very mild, just a tremor in my right arm and leg and muscle spasms in my shoulders. On a good day you probably wouldn't know that I suffer from Parkinson's, but as Parkinson's patients, we all know that a "good day" for us is not the same as a "good day" for someone else.
Like many of you, I do not feel ready to attend a support group, but I would like to have a positive forum for those of us who just don't want to burden our friends and families with the problems with the problems we experience daily.
As you see from above, the title of my column will be "Tell Me How You Really Feel." I hope to become a sounding board for patients to share their feelings, concerns, experiences and fears, and to become a connection between the medical community and the patients. I do not hold myself out as a medical professional, nor will I give out any medical advice other than to refer a patient to a specific doctor or support group.
OK, here we go!!
The acronym for my column will be the word "HOPE."
H - HONESTY
Be honest with yourself and those around you concerning the implications and manifestations of Parkinson's. Be honest with yourself when it comes to recognizing your attributes and limitations.
O - OPTIMISTIC
Try to be positive, it can be contagious. Focus on all of the things that you can do and not just on the skills that seem to be fading. Pinpoint the everyday tasks that you can improve on and strengthen.
P - PREPARE
Work on maintaining and even improving your health with exercise, meditation, and spiritual regimes. Plan your day to be able to get the most positive experience possible. Do not give up until you can find a doctor that you can relate to and be comfortable with, someone who allows you to be a partner in your treatment and who truly listens to you.
E - EDUCATE
Educate yourself and others. No one can understand your experience if you do not share it with them. Research the research. Stay abreast of all the new advances in research and medical trials. Every patient has a different perspective based on the path of the progression of their disease. Be empathetic. Nothing feels better then to put yourself in someone else's shoes and to stop focusing on yourself for a while.
Finally, from my experience, one of the most positive things that has come with my diagnosis is the art of communication. Not just talking but listening. Taking ownership of your own behavior and the power you have to alter your life! Making decisions based on strength instead of weakness and most importantly, putting yourself in a position to feel support, the ability to accept being educated and the gift of empathy. Don't be afraid to take that next step, put yourself out there, and risk failing, or you will never know what it feels like to succeed!!!
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