Lets help the Doctors out there create sub categories for Parkinson's.
I will start off with mine : Dystonia dominate with anxiety induced tremor.
Is there any Doctor or qualified professional who would like to see a questionnaire that we could create a more detailed analysis of our sub categories.
I'm the same.
That is a good idea, since it seems like many people are affected in different ways by "Parkinson's". I prefer to call it neuronal degeneration disease, which can then be subdivided into different categories.
Rigidity dominant with anxiety induced tremor. Fatigue and pain.
I have the same symptoms.
We might have to get with the powers that be and come up with a plan. We are not going to get far this way. We will also need to know if early onset. I guess the first catagory should be tremors or rigidity ....
Or am I forgetting something?
Great idea. Thanks for getting it rolling.
Affected side may be of clinical significance, after tremors and rigidity,
Maybe I should take my own medicine and start with physical or mental.
Rigidity, dystonia no tremor. Early onset diagnosed at 47 but symptoms since 42. Left side worse but both affected.
Awareness for our condition from patients, doctors, and the general public is horrible at this point so any kind of change is good
Here's mine.... PIGD with foot dystonia, abject fatigue and apathy. No tremor.
I think it would help if it ere organized by 3 divisions to start. Age of onset, tremor vs PIGD and motor vs nonmotor severity of symptoms.
Wow, where is the starting point? How about this, did you speed up or did you slow down? Lets start where I believe that we are all the same, sleep. Are you sleepy all day? Do you have problems getting motivated, maybe totally apathetic. Maybe your blood pressure runs on the low side or are you like me, crippled by anxiety, you feel like you are almost in a constant state of fight or flight. You walk into your doctors office and your blood pressure skyrockets to...hm...... lets say something like 160 over 120 ???????
Maybe that should be the starting point..... ok Parkies did your world speed up or slow down?
You described it for me too.....crippled by anxiety, in fight or flight mode for no reason (and generally shaky all over). Exhausted and apathetic partly due to insomnia.
What a complicated disease! I guess mine would be dystonia and other pain, weakness, anxiety, depression, tremor when stressed. Four and a half years since being diagnosed and I sure notice when my meds are working or not working.
I went years without knowing what was on and off time. I felt like garbage the whole day through.
When I was first diagnosed and put on sinemet I didn't experience on and off, just on. Boy, that sure has changed! Do the meds help with your anxiety and pain?
The antianxiety meds do more for me with the pain than actual sinemet.
Early onset (age 46) with cognitive impairment along with bradykinesia & rigidity & after several years, tremor in hands & head. Dyskensia mostly brought on by anxiety as well as speech difficulties.
Sounds like we have the first tier as two categories. Physical impairment and mental impairment. Our we all agreed or am I missing something?
It seems to me there are no clear lines to delineate what we have. Very hard to definitively categorize as things change and progress and overlap. I never had the tremor until recently, when I'm off my meds or stressed. I suppose that will get worse with time. Boo hiss.
I am thinking, " yes it hurts " that there are questionnaires which describe your personality in colors. I am looking at NanCyclist Grand Canyon Post and wondering if I could do that ? Physically No Problem but mentally. ?????? Psychologically ???????
I had the same thought about the Grand Canyon trip. It's so lovely and looked so wonderful but then I realized I would probably be full of anxiety the whole time and not really enjoy it until I got home and thought back on it. I still think part of the anxiety stems from knowing I am like the wounded animal at the back of the pack and so must be extra vigilant and anxious. That primitive part of my brain...
Early onset (47), left side affected, bradykinesia, rigidity, dystonia (left foot), very early low-dose dyskinesia.
My thoughts are pain should be a subset of both. If you have pain where is it and are you able to relieve the pain. Whether you use opiate, muscle relaxers, Botox, beta blockers or like me anxiety meds for the pain would be a big starting point.
Hal, Your initiative is very good, but somebody is already on the case. The "Fox Insight" study is already collecting data of the kind you mention.
Any Parkee can join and contribute. Every three months they remind you to fill out an extremely detailed questionnaire on all aspects of your condition, including the frequency of a symptom and the degree to which it hampers you. I've been participating for about a year or two. It seems to be a worthy endeavor for sussing out trends and patterns.
I kept asking if there was anybody doing the Fox Insight and it was as quiet as a Tomb.
I fill out so many questionnaires, I could do it as a full time job. I hope somebody is pushing some numbers by now.
ALSO...... I would like to see questions like- do you startle way to easy, do others correct you on word choice. Does maneuvering through crowds and traffic slow you down or send you into a panic?
YOU KNOW the things that make us tick.
Why do you want to ask these questions? To feel less alone? To put these disturbing things into perspective by finding that they are fairly common correlates of this disease? To get some hints on how to manage them? Well, clearly, Fox Insight is not going to fulfill these needs. But schmoozing on this site might. Here is where "small is beautiful" and person-to-person beats the big-dollar, impersonal, mega-machine, corporate effort.
I get frustrated on how long Parkinson's has been taboo. I feel that Parkinson's is the modern day leprosy. Why is it that my Doctor can not prescribe medical marijuana, or opiates for that matter. Why did it take 5 years to come to the conclusion that anxiety was the cause of my back pain. I am tired of there is no cure and we really don't know if we can get you back into the game.
But Remember Exercise !!!!!!!!!
Sorry for the F bomb but I could not make a better speech.....
just substitute proper names with the word Parkinson's.....
Great video clip. Bluto is right! Sometimes the little guy has to stand up for his rights even if that means a stupid, futile, and totally self-destructive gesture. Honored fellow nitwits, let's do it! ROFL
It is becoming clear to me that we will never be able to use symptoms as a category breakdown. Therefore I am going with my theory that Parkinson's is a communication disorder, so we will define the categories by the meds we take.
First off Parkinson's : Parkinson's is associated with physical symptoms, so a movement disorder. It is also associated with dopamine so lets not redesign the wheel and go with that.
P-0 : diagnosed with PD but not taking dopamine - maybe amantadine or azalect
P-1 : using a small amount off dopamine / dopamine agonist
P-2 : using a medium amount of dopamine ( to be determined )
p-3 : using maximum amount of dopamine
P-4 : D.B.S / or equivalent and medication
Next there should be a fraction to give the amount of dopamine to dopamine agonist.
So I would be a P-1 ( 75 / 25 )
Under that a list of neurotransmitters
So I would be a .....P-1 (75 / 25 ) S-3 ( positive CBD profile )
still a work in progress
Me too!! -although I have suffered from anxiety for decades before I had the dystonia symptoms. In fact, when I first saw GP for my neck twisting to the left he said it was a symptom of my anxiety/panic attacks. I had some physio and it wasn't until 6 years later that I was referred to a neurologist who diagnosed Cervical Dystonia. I definitely think anxiety and dystonia are linked.
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