symptoms of PD

[cceelen]

I posted recently about how the book "Once Upon a Pill" helps us know which symptoms are from PD and which are from medications.

Someone asked me for a list and because of the way I have been skipping through the book, I didn't have an easy list.

Today I read a chapter that has great descriptions of multiple symptoms, to help us know if a symptom might be from over or under medication or from PD. Some symptoms have forms that are due to PD, and other forms that are due to medications. Freezing is an example. There are distinctive ways freezing presents if it's due to PD, and different ways that freezing presents if it's medicatiion related.

The chapter is chapter 5, called "Terminology" starting on page 73,

The book is free online: pdrecovery.org/once-upon-a-...

[park_bear]

People unfamiliar with the book linked to above may want to read the comments to this post before proceeding further:

healthunlocked.com/cure-par...

Also, this is the first I've heard of medication causing freezing. Is anyone else here aware of this?

sciencedirect.com/science/a...

"Meds improved freezing episode (FE) frequency, duration and stride duration in freezers (P < 0.01). Over 73% of freezers did not freeze on meds, although one freezer had more and longer duration FEs."

[Juliegrace in reply to park_bear]

My meds are definitely the cause for my freezing. I’ve posted about it several times.

[cceelen in reply to Juliegrace]

After reading, I think my freezing is the type that is from the PD... I have trouble making tight turns, especially in confined spaces

[LAJ12345 in reply to park_bear]

This describes perfectly the scenario with my husband and dopamine whenever doctors increase it. P74

….

[park_bear in reply to LAJ12345]

Yep - Dyskinesia. Levodopa induced.

[LAJ12345 in reply to park_bear]

And PD specialist nurse refuses to entertain the idea that it is too much of the drug and wants to increase it!

[cceelen in reply to LAJ12345]

Yes, I haven't heard of any western medical folks recognising the signs of overmedication. Mantra seems always to be "more meds"

[shaken-not-stirred in reply to LAJ12345]

Yes this happened to my husband when they added Sifrol/Simipex. He started violently flinging his tremor arm and almost knocked me out a few times. He was on this drug for over 6 years and we recently weaned him of it over a 2 month period. My husband is now back to what he was in 2017 - standing upright, holding his head up and not looking at the ground, normal gait, peripheral neuropathy and numb feet gone, hands and feet twisting - gone. Sure he has his tremor and stutters when exited or happy but he has quality of life now and sleeps like a baby - we were only talking about his tremor this morning and he said that it was nothing in the overall scheme of things and only annoys him when he trying to do fine actions with that hand.

He is a happy chappy.

[cceelen in reply to park_bear]

Freezing from PD looks/is different than freezing that comes with medication, they should have different names, but unfortunately they don't

[LinnyGee]

thankyou for your reply, I will follow this up.

[LinnyGee]

I have just read a part of the online book you suggested and its filled me with horror. It takes away any hope for those of us who have been on meds for many years, 10 in my case I feel quite distressed.

[LAJ12345 in reply to LinnyGee]

It was only caused by too much medication in my husbands case. After reducing the meds he returned to his previous self, so don’t stress. It isn’t inevitable.

I feel like it’s like taking morphine to balance pain. When you take just enough you are ok, any more and you become addicted.

[cceelen]

I'm sorry, It's horrible, I know. She has case histories throughout the book. Some of people who had been on meds a long time. With information, they were able to improve their situations..... the main message is to try to minimize med use.....