Ten years ago, I broke my left ankle. Ok, so what does that have to do with Parkinson’s? Not much, except that a few weeks later, my right foot started to twitch. It wouldn’t go away. I thought that I have done something when I fell to cause it, but that was not the case. The fall and broken ankle were apparently a trigger for my Parkinson’s symptoms to suddenly appear. But was it so sudden? No, there were signs at least 6 months before, but they were transient and seemed like nothing to worry about. But the tremors after my fall were no longer transient and it was time to see the doctor about it. My wonderful internist, Dr. T, prescribed Xanax, which didn’t do much for the tremor, but I slept well for the first time in months. He says that he knew right then that I had PD, but did not refer me to a neurologist or Movement Disorders Specialist (MDS) at that time because of my broken ankle.
I was diagnosed with a Parkinson’s like tremor, given medication and told to come back in a few months.
Fast forward six months when I was diagnosed with Breast Cancer. Fortunately for me, it was barely Stage 1. I was scheduled for a lumpectomy and radiation. All of this made the tremor worse, it had now spread to my hand. After I had a breakdown in his office, Dr. T send me to a Neurologist. That, unfortunately, was the wrong move. I was diagnosed with a Parkinson’s like tremor, given medication and told to come back in a few months. No information, no reassurances, nothing. How many of you have had this experience? You go to a Neurologist or MDS who gives you a diagnosis and then leaves you to suffer in total ignorance, just when you need the support the most. If I remember correctly, my husband, Mr. Twitchy, was at work, so I had to go it alone. There I was – in total shock – with nowhere to turn! It was definitely not the way I wanted things to go. It went from bad to worse with this doctor, so six months later Dr. T referred me to a MDS, who gave me the tools to educate myself about Parkinson’s and took the time to answer all of my questions.
To this day, I think the Neuro was trying to be gentle with the diagnosis because of my surgery scheduled for the next week. Think how much better would it have been for me if he had give me some information on PD, support groups, and a return visit within a few weeks just to make sure the diagnosis had sunk in and to answer any questions I had.
10 years is a long time to have any health issue. I am truly grateful that I am doing very well after all of this time. I am on the right medication for me, exercise almost daily and pursue many activities that I enjoy, one of which is writing this blog. One of the most satisfying things that has happened, however, is the opportunity to connect with other PwP’s everywhere. I have met a lot of smart, amazing people everywhere who are role models for me. Finally, I have been able to do things that I never dreamed of.
So for my 10th anniversary with Parkinson’s, in addition to the fantastic meeting with Jimmy Choi a couple of weeks ago, I was interviewed by The 2 Mikes: Michael Quaglia and Mike Achin, DJ’s on Radio Parkies Web Radio. My interview was aired last Saturday and is now available to stream here. I come on at about the 20 minute mark, and make sure you listen until the end (past the song Hotel California). You will hear most of my story about living with Parkinson’s Disease for the last 10 years. I also think you will enjoy listening to DJ’s Mike & Mike. They sound like a lot of fun and I hope to meet them in person sometime soon.
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