Hi everyone! Mike, thank you so much for creating such a great chat site for all of us. It is much appreciated.
I have no clue what to say. What would you like to know?
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Hey Barbara, welcome! It’s so great to see you! I have enjoyed your TikTok videos but I haven’t heard your diagnosis story. Maybe you can start with that?
I’m always bad at where to start. So thank you for giving me some kind of guidance here.
My dad had Parkinson’s, so I was very aware of what the symptoms were. At the age of 40 I started having some of those symptoms that got me very alarmed. I was a tremoring on my right side, but not my right arm or hand. It was my leg. I also noticed I was moving slower and and I had no sense of smell… I went to my family practitioner and explain to him . The first words out of the mouth were, “you are too young to get Parkinson’s”. And he left it at that.
The next year I went and had more complaints. I was falling, losing my balance easily. Now this time, my right arm and hand or tremoring along with my right leg. He would not approve me going to see a neurologist.
The third year I never went in. I was just frustrated as all can be! The fourth year I noticed rigidity in my muscles and I had a client accuse me of being drunk on the job. I was a photographer, and I was being very clumsy that day, and he thought I had been drinking. I remember being in tears. I went into my doctor again said some thing and this time he told me women do not get Parkinson’s. They get MS.
My fifth year, my handwriting totally changed. It wasn’t until then that he finally listened to me. My handwriting got so tiny and illegible, and the more I would write the worse it would get.
I was 45. That was 23 years ago.
I went to see a movement disorder, neurologist, and was so disturbed and upset that yes I have Parkinson’s. For the next 10 years only people who knew was my husband, his sister and my 3 kids. I was terrified the world would get out there in the Photography world and to my clients and hurt my business.
In the meantime, my dad passed away. He died with me, holding him in my arms. The best I could is he laid there in his hospital bed at home on hospice. He had aspiration pneumonia. When my dad passed he never knew that I had Parkinson’s. I didn’t have the heart to tell him because I knew how upset that would make him.
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Hi Barb good to see you here
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Thanks for sharing your story Barb. I always think about you, when did you start posting on tiktok?
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Hey Barb! You’re amazing! Looking forward to connecting more 
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hello Esther! It’s always so good to hear from you. I just started April 2020 onTiktok. I had no direction where I wanted to go.
I had no intentions on even talking about Parkinson’s. I used to be a platform speaker for a PPA —professional photographers of America. I would share with others what it was like being photographer with obstacle standing in front of me every day. So I really didn’t think people would be interested in hearing me talk on social media about it as I did when I traveled around the US and would speak at conventions.
When I did start sharing about Parkinson’s, it didn’t seem like people like the parkinson community wasn’t interested listening to a boomer—someone who’s had this disease for many years. So I would not post consistently, but whenever I did, it was the people outside of the parkinson’s community that took interest.
I did everything the wrong way on TikTok. But I’m not on this app for numbers I’m on this app to connect with others and hopefully make a small difference.
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Exactly how I feel! If I can help one person it’s worth it
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