Parkinson’s taboos

[ParkinsonsEurope_Jen]

Parkinson’s taboos: What are the lesser-known or lesser-discussed Parkinson’s symptoms you have experienced?

We’d love to hear your thoughts and experiences – please comment below!

[ddmagee1]

That's an interesting topic that needs to be discussed, I believe. I had episodes of being locked in a stiff, standing, position, where I just couldn't move, couldn't make my muscles move for nearly a minute, and sometimes longer. I would freeze in place. This was before I was diagnosed, and before I saw a movement disorder specialist. One time it happened when I was walking my dog. I stood frozen in place, and my dog patiently waited, for about 20 seconds, or so. Then he pulled on his leash to get me going, but I couldn't respond, so I fell face forward, on the road pavement, and proceeded to have a face implant. The bad part was that I couldn't stop my fall! That was scary. I got a bad hematoma, on my forehead. I lost consciousness for about a minute or so, but my hand stayed clenched to the dog's leash, and he stopped pulling, I guess, after I fell. Blood was coming down from my forehead. So, thankfully, my house was just about 800 ft. away, so I made it home, and my wife took me to the hospital. They did a brain scan and tests. I had blunt force trauma, and a concussion. Along with the hematoma, I ended up with 2 black eyes. I actually didn't get diagnosed till about 2 years later, after we had moved from a small town, with no specialists, to a large city, with a regional medical center, who had movement disorder specialists. Neurologists, and Neurological Pathologists. I was diagnosed and put on Sinemet right away, then, and it has helped a lot. Not everybody gets the freezing episodes, but I sure did. Now, several years later, I'm having problems with numbness, in my face, hands and feet. I feel like a pins and needles sensation that has gradually been getting worse, so that now, it bothers me a lot, after I've used my hands, in the cold, shoveling snow, as an example, for about a half hour a shooting pain that gradually settles down to mild pins and needles. The neurologist has done blood tests on me to rule out everything that it could be, other than Neurological. It could be part of the Parkinson's , but my doctor is still working on that. I initially presented PD with Resting Tremor, cogwheel rigidity, muscle stiffness, and ataxic-type gait. Another problem that I have is a little trouble swallowing, so I have to be careful that I chew food well, and there is some types of food that used to be easy for me, but now I would choke on them, a little, so I really have to take my time chewing and eating. Eating beef briscuit, dinner rolls, steak, cake, are examples of food that is difficult for me to swallow. I always have water to drink when I eat. Constipation has become a problem for me, having PD, also. I take Metamucil, and bran to help, but, for sure, my entire digestive system is slower with having PD. Well, I think I've rattled on and on enough, so I hope some of this, is what you were looking for. I do think that many people don't realize, that PD can affect the body's autonomic system, as well as the motor system. Best regards in your quest/research on the lesser known symptoms of PD, and their effects on patients lives Administrator Jennifer!

[ParkinsonsEurope_Jen Administrator EPDA in reply to ddmagee1]

Thank you so much for sharing your thoughts and experiences with me ddmagee1. It is very much appreciated

[Johnmo]

The frustration of not being able to describe /explain what/why/how I can't describe/explain /express what is in my mind. The cognitive equivelant of the frozen face.

[ParkinsonsEurope_Jen Administrator EPDA in reply to Johnmo]

Thanks for sharing Johnmo

[mannp]

Word retrieval, getting lost in a comment. I forget what I am talking about. Inability to rollover/turn over in bed. Inability to keep my eyes focused.

[ParkinsonsEurope_Jen Administrator EPDA in reply to mannp]

Thanks mannp for your sharing too!

[jupiterjane]

I hate Parkinson's and all the symptoms and problems it causes!

[LTT0019]

The unpredictability of PD. I can have plans and get ill a hour before leaving the house and have to cancel at the last minute. Good day or BAD day. Good hour or BAD hour. Bad is so hard to explain and this is very frustrating. "On/off" People only think of PD as the tremer and when you don't have that symptom going on they seem to think you must not have PD. Here are a few symptoms I hate: muscle ach, toes curl, stiff pelvis, frozen feet, can not turn over in bed, bladder control, back pain, BP fluctuation, sleep problems, acid reflux, controlled by medication schedule, anxiety, dizziness, dry eyes, constipation, unable to multitask like I use to, increased uric acid from meds, etc

[mannp in reply to LTT0019]

I highly suggest you try HDT (high dose thiamine). Facebook has a group dedicated to this. It is called Parkinson’s Thiamine hcl. It is full of information. Most of my symptoms are gone or very reduced taking this.

[ParkinsonsEurope_Jen Administrator EPDA in reply to LTT0019]

Thank you so much for sharing your thoughts and experiences with me LTT0019. It is very much appreciated

[SCT25]

How about wicked dyskinesia brought on by vigorous sex? Am I the only one who gets that?

[ParkinsonsEurope_Jen Administrator EPDA in reply to SCT25]

Thanks for sharing SCT25

[honeycombe in reply to SCT25]

SCT25,

How's your sense of humour? If there's a partner involved in the vigorous sex they get affec

ted by it too.

[SCT25]

Jennifer - Am I the only one who has reported this?

[ParkinsonsEurope_Jen Administrator EPDA in reply to SCT25]

Hi SCT25! Yes, you are.