Two different Parkinsons

[Grumpy77]

Parkinson is an extremely complex disease but broadly speaking it is categorised into tremor dominant and rigidity dominant.

But the 2 have very fundamental and philosophical differences. As someone with tremor dominant PD, I know stress and anxiety is a core backbone of the disease.

From comments and communications with rigidity dominant PwP other issues form the core of their disease

Why then does medicine lump us into one group? Giving us just the same medication?

From my direct encounter with my neuro , i know they are fundamentally lazy and merely seek to find the easiest way out rather than find concrete solutions. I mean this woman, on diagnosis, just said (paraphrase): "go take this drug, as the disease progresses you will up the dose to counter it, and then repeat, until a max dose beyond after which you can no longer be helped, then you're fucked"

These people don't even know what they are dealing with

Anyway before i get side tracked, the main question i'm asking in this post is don't you think tremor dominant pd and rigidity dominant pd should be two separate diseases and should have different solutions?

And I doubt the practitioners know what they are doing, the fact that both have dopamine deficiency doesn't mean they're the same

Thank you

[Nitro53]

Didn’t know there was two catagories What’s the long term symptoms for both?

[ElliotGreen]

I am akinesia dominant (I have bradykinesia more than rigidity, and rigidity more than tremor). I'd still stay that "stress and anxiety is a core backbone of the disease".

[PDGal4 in reply to ElliotGreen]

This describes my Parkinson’s exactly.

[park_bear]

There are additional variations - I am neither tremor nor rigidity dominant. Motor impairment is my main symptom.

As to what the doctor said, yeah, you got the standard medical outlook. They think they know everything there is to know but that is not the case.

[LTT0019]

I am rigidity dominant. Everyone starts looking for the TREMOR . They look at me wondering where is your tremor and I know they are thinking you can not have PD. It even seems my physician is more interested in the tremor. ??

[AmyLindy in reply to LTT0019]

True! The Inexperienced Dr.s ...

[Niggs]

Hi, I'm rigidity dominant, stress turns me into a statue, so I say stress can affect both types, however I agree entirely with your view of most neuros (in my experience).

[GBAMIGOD in reply to Niggs]

Niggs. If I may ask,do you have gait,posture and motor issues too?If so how long have you been diagnosed,and hope you are coping well with medications.I am rigidity dominant too.

[Niggs in reply to GBAMIGOD]

Hi friend, I was dx'd in 2009, so I'm into my 10th y. after years of chronic stress. Yes, I've got a stooped posture and gait problems, (I've also got congenital podiatry issues and a family history of neck problems). I've never had what I would call satisfactory symptom control via the meds. I've been hospitalised twice due to drug-induced anxiety attacks, the last time November 2018. I'm currently waiting for a psychiatric appointment.

[GBAMIGOD in reply to Niggs]

Hi Niggs,thanks for your reply.I have intermittent neck pains too.I am 3years post diagnosis.I was worried about the speed of progression with the PD phenotype we have.Would you say, you have experienced any rapid progression since your 9 years of diagnosis?Anxiety is a major non motor symptom that I experience as well,and I am currently on an anxiolytic which is short acting.I currently use the pill to sleep,but not very effective for prolonged sleeping.I am on c/L,and this complicates my sleeping.Sleep is fragmented,thinking about alternative sleeping aids with little or no side effects.PD is so complex a disease and I hope they find a cure real quick or better meds with less serious side effects to slow it down.I hope you are exercising.Thanks again.

[GBAMIGOD in reply to GBAMIGOD]

I am sorry Niggs.Thanks for your recent reply.

[M1tz1]

I understand what you are saying, Grumpy, about PwP being lumped unto the same group and being given the same medication. My husband had rigidity and attendant problems. I couldn't do anything about reversing his Parkinson's but I could and did do something about his Alzheimer's and not with the single pill he was given and took. I followed the teachings of Dr Dale Bredesen, US neurologist and researcher, who said Alzheimer's has 36 different possible causes. Not all sufferers have them all, obviously, but it's a question of finding and treating those that apply. I wonder whether, someday, the same will be found of Parkinson's.

[ddmagee1]

Grumpy77 How would you categorize me, then? I had very bad essential tremor and resting tremor, before I was diagnosed with PD. I had resting tremor in my left hand and neck that was constant-very noticeable. Essential tremor was in both hands. I had such severe, confirmed cogwheel rigidity, in all 4 limbs, that I was in constant pain, with shoulders, knees, etc. My hands and feet would jerk up and down, with cogwheel rigidity. Also, my neck. I couldn’t walk more than 20 feet, without having to rest for a bit, because of the pain. I’d have sharp pain in my feet, calves, back, and jaw. When the jerking muscle pains came, they threw me for a look sometimes, they hurt so much. I reckon that’s called dyskinesia. Anyway, I was such a mess, when I went in to my Internist, just before diagnosis, that he told me that It looked like I had Parkinson’s to him, and he wouldn’t let me go home till he, personally, called, the best movement disorders specialist in town, and got me an appointment to see that neurologist the next day. I saw the specialist, and he tested me, and took a history, and put me on Sinemet and another medicine right away. Now, several years later, with several medicine adjustments, I still have some tremor and cogwheel rigidity, but it is minimal, and doesn’t interfere too much with my daily life. Other PD symptoms bother me more now.

[Grumpy77 in reply to ddmagee1]

wow, this just confirms that PD is an extremely complex disease. sorry to know you had so much issues but good to know you responded well to meds

I don't know what category this is mate

Just out of curiosity, did your worst symptoms appear when you were a middle aged person or when you got older? I also ask because PD symptoms worsens with age

[ddmagee1 in reply to Grumpy77]

My worst symptoms were in my late 60's. I was diagnosed at 70. Thank you for being so supportive! Yeah, PD is such a variable disease for each person. All of my studies indicate that the reason for such variance amongst each person, is dependent upon where and how much neuro-degeneration occurs in the substantial nigra, and, perhaps, other areas of the brain, as well. It is a neurological challenge to control, for some, for sure.

[cullinan15 in reply to ddmagee1]

Hello I'm just new to the site and I just want to say I was diagnosed with ET when I was 35 I'm now 57 and they say it looks like Parkinson's. My dad and his sister had it and my mum had essential tremor

[Hidden]

I’m sorry that you have had problems with your Neurologist. My Neurologist at the National Hospital for Neurology and Neurosurgery has been fantastic for the past 10 years.

[Judyrsmith]

agree on 2 types-so what drugs are most effective for each?

[GBAMIGOD in reply to Judyrsmith]

@judyrsmith. I think the researchers are currently studying the PD subtypes and are trying to figure out how to treat them with medications and alternatively for good.

[JANVAN]

Yes, Grumpy, very good statement !! There are tons of studies about the brain and the

pathway, etc. This part does that, other part does this, till in motorik detail.

I've also had to studied a lot of these things, in my "young" years.....

I just don't understand it, why they don't do more and analyse more the clinical symptoms.........

[AaronS]

I was diagnosed last year (feb) I'm 36 now, I was classed as tremor dominant but had the worst frozen left shoulder and arm, my left hand wrist would freeze and my gait went to hell in a handbasket, with motor issues occurring in my left hand, I'd fall over from bad balance issues and I could walk down a hallway but it would be like a pinball bouncing off the walls. I lost so much strength I couldn't hold my newborn and 1 year old for longer than 30 seconds at a time.

Dr put me on Madopar 1.5 pills 3 x a day, I exercise rigourously reduced my heavy metals intake where i could, cleaned up my diet, reduced stress and now started b1 supplementation, I'm a different person now 90% of my symptoms have stabilized and im on less l-dopa than when i first started,but I might need to be classed as super Parkinson's as I had everything and no one thing greater than the other

[Hidden in reply to AaronS]

AaronS,

Thank you for this post! I have cut and pasted it to the "who is taking HDT" thread where it will be seen by more members because that post is heavily followed.

Art

[Rlp1 in reply to AaronS]

Are you sure you have PD? Has your MD considered vestibular disease?

[AaronS in reply to Rlp1]

Hi Rip

I'm starting to research more info now, I can go 2-3 days without madopar and still function quite well, my younger sister, 34, has initially been diagnosed with PD as well but her neurological DR doesn't think it's PD but rather a version of PTSD where the body mimics Parkinson's symptoms. After reading up on the sickness called psychogenic movement disorder i do feel this maybe more appropriate to me as well, my tremor has changed and when I get distracted or completely relax my tremor disappears, and over the 2-3 days off without meds my tremor doesn't increase...... something isn't lining up

[Hidden]

I just wanted to point out that tremor dominant Parkinson’s is believed to have a much better prognosis. I have been told that by three different MDS.