The Price of Parkinson’s Disease
I started to notice symptoms around 2019 (in hindsight my symptoms were more like 2015). First, I couldn’t do my spin classes because my foot would turn in.
- Kim DeSouza
I tried orthopedic doctors, physical therapy, and acupuncture but because I had a difficult time explaining what the issue was, other than when I spin in class I can’t get my foot flat in my pedal (just my left foot). Nothing helped and I stopped trying. Then my handwriting went from round and flowing to a tight small unreadable mess.
Oh, how I hate when a co-worker asks me to sign a card. Then my speech was getting difficult to hear. I would go from talking normal - to a hoarse whisper within a sentence. I tried a speech therapist and she sent me to an ent doctor to make sure that there was nothing else going on. I came out clear but the speech therapist was young and the exercises that she had me doing seemed more geared toward a child. I stopped going to her after 3 visits.
Then I noticed that, at times, when I tried to take a step I would freeze and couldn’t move my legs. It was very rare at first but now freezing and festinating is my biggest issue. I have always exercised but now I couldn’t coordinate my left side to do cardio boxing or step classes. When I noticed that my face and voice weren’t able to show the emotion that I felt- I decided to look up flat affect. And Parkinson’s came up. Ok -------As I read the symptoms my heart dropped and I closed my phone unable to continue reading the familiar symptoms. Could this be really my issue?
I went to my GP. She listened to my symptoms and I saw a sad smile come across her face. Her husband has PD and it all sounded familiar to her. She referred me to her husband’s neurologist. It wasn’t a good match. He never looked me in the eye when he talked and prescribed levodopa/ carbidopa. I thought it was too early to put me on meds before any additional testing. I went back a second time and he prescribed me an anti-depressant because he thought I was depressed I wasn’t depressed. If he asked me he’d know that.
I never filled it and decided to change neurologists. Then COVID hit and I put everything on hold. Until January 2021 when I decided that I needed to figure this all out. I know it’s long-winded, but as of this year I have a neurologist. She is local and is a movement specialist and it's been a great match. I continue to have a difficult time walking/turning without losing my balance. I've heard such great things about Rock Steady. I wish that we had one near me.
I am currently taking levodopa/carbidopa. I am starting with a new speech therapist who specializes in LSVT.
UPDATE!
I have found an LSVT big program in my area and completed it this past September and update to the UPDATE.
The physical therapy was a a LSVT program the therapist office called my insurance to see if it was covered (it was, she told me) BUT WHEN THE BILL CAME WE OWED OVER $2,000 BECAUSE THE 4 WEEK 4x A WEEK PROGRAM TOTAL FOR THE 4 WEEKS WAS OVER $24,000!!!
My advise to all (until we get national Healthcare) Is to ask the price of everything. Yes, I understand that health has no price tag, BUT we should have choices.
Kim DeSouza, 60, USA - I am 3 solid years into my diagnosis and I feel it progressing- I think because I was a gym rat for so many years it delayed my symptoms but when we dropped into 2020 my gym closed and I began to gain weight and then the symptoms were more apparent.