Yesterday, I received an email from a friend from my friend, Debra, asking for advice. About 6 months ago, she developed a tremor in her right hand that would come and go. Debra finally asked one of the doctors at the clinic where she volunteers to take a look. The doctor told her it could not be Parkinson’s because – are you ready for this one – Parkinson’s is always bilateral! In the meantime, her husband had noticed that her arm was not swinging when she walked. Another classic sign of PD. She has problems sleeping, along with night terrors. Too many PD boxes checked off, but her doctors couldn’t seem to figure it out.
Because of our friendship, Debra had been following this blog for quite some time. But she waited to call me because she just wasn’t ready to talk about it. She had an appointment later in the day with her internal medicine doctor and didn’t know what questions to ask. We spoke for almost an hour, going over her symptoms and what she should ask her doctor.
No one had suggested that Debra see a Movement Disorders Specialist. She lives in a city with a major university research hospital, so I suggested that she ask for a referral to a doctor there. In the meantime, I got in touch with a woman I know who sees a MDS at the university and asked for the name of her doctor.
A Two Year Wait!
Debra saw her doctor and asked for a referral to the Movement Disorders Specialist. When she called, she was told that she could not get in to see the MDS until 2025! Two years from now. That just doesn’t make sense to me. In fact, as Debra said, it is downright cruel. I would think that a doctor with a specialty in a specific area, like Movement Disorders, would make room on his/her schedule for new patients whenever possible. Or there should at least be another MDS in the office who can take new patients. They should not have to wait years to see the right doctor. Even 6 months is too long to wait, but it happens all of the time. Early Parkinson’s is not a life threatening emergency, but the sooner a person is diagnosed and given the right treatment and medications, the better their quality of life will be for a longer time.
In the meantime, Debra will go to a neurologist armed with a lot of questions so that she will finally get the right diagnosis and get appropriate medications.
This scenario still happens all too often. With Parkinson’s numbers rising exponentially, we need more Movement Disorders Specialists to diagnose and treat People with Parkinson’s. Even more important, medical students need to learn more about PD and how to treat it, as do many of our general practitioners whose knowledge of PD is woefully outdated.
The Countdown to the World Parkinson Congress
I am leaving in a few days for a vacation in the UK on our way to Barcelona. The WPC is now less than two weeks from now. We have an amazing group of Twitchy Women going as a group – 27 total from around the world plus their carepartners, friends and family. We will be posting daily on Instagram and Facebook with information about what we have learned and lots of photos. On Thursday July 6, we will have one of the featured posters on the afternoon Poster Tour. We hope to stream our 10 minutes of fame live. Watch for an announcement about how and when you can join us. We will definitely be recording it, so if you miss it live, you can watch it later.
On Sunday, July 23 at 1 PM ET (10 AM PT), at Sunday Mornings with Twitchy Woman, we will have several members of our group join us to talk about the WPC. This event will be open to everyone. You can register now by clicking here.
Parkinson’s on TV and the Big Screen
Looking for something to watch? Parkinson’s Europe just posted a list of TV shows and films with characters who have Parkinson’s. They asked the PD community for their views on the portrayal of the condition by fictional characters in TV shows and films. Do you agree with what they said? Access their findings here.
Have a great week!
Leave a Reply