So which 'subtype' are you?

[jeeves19]

There's a vid on Youtube. It's entitled 'The Stages of Parkinsons' but they start off by describing the types of PD. It's a neurologist narrating and I was surprised at the simplicity if his argument (and not in a good way). He first cited the Tremor Dominant type and declared that this was the best to have as the prognosis was good. Drat, thinks I (not having a tremor). So I wait to hear my version described (PIGD). He continues: begins with shuffling gait, falls either backwards or forwards in the early stages, doesn't respond well to Levadopa. Lots of balance issues too in the early stages.

I'm surprised by all of this. I have no falls, no balance issues and respond well to Levadopa. I have no tremor. Do many of the community similarly have difficulty classifying themselves and are you just a bit surprised at the simple stereotyping of a neurologist?

[jimcaster]

I believe there are subtypes of PD and/or it may be multiple diseases. Beyond that, I don't think there are any generalizations about disease progression which we can rely on, except perhaps that the younger we are at onset, the slower it progresses.

[Hidden in reply to jimcaster]

Generalisations are useful if you are learning about the disease academically.

They arent much use if you are a PWP or caregiver.

[jeeves19 in reply to Hidden]

For sure!

[Oceanflow in reply to jeeves19]

Or maybe understanding these subtypes will be useful for PWP too as perhaps the therapies and various interventions which are used may start to differ as they learn more about the subtypes. I am a non-tremor subtype but I get a lot of relief from levodopa.. I have rigidity issues, postural issues and some gait issues too. I don’t seem to have any balance issues so far, and have not fallen yet. It would be nice if I could narrow my long list of supplements down. I am suffering from pill -popping fatigue!

[JohnPepper]

I think there is a definite difference between those with a resting tremor and those who shake when writing and bringing food to the mouth etc.

I have found that patients with a resting tremor do not appear to get a lot of benefit from the fast walking!

Please tell me how you got this info on YouTube.

[jeeves19 in reply to JohnPepper]

youtu.be/3xW8A3dd5yg(Not working as expected?)

[JohnPepper in reply to jeeves19]

Thanks Jeeves

I have got as far as stage 3 but because of the fast walking, I have stayed at that stage.

My tremors are now on both sides and I find it difficult to write or paint, because of the tremor.

[jeeves19 in reply to JohnPepper]

Time for DBS maybe John? Never say never mate!

[JohnPepper in reply to jeeves19]

DBS is not guaranteed 100% success. I do not need to take that risk. My life at 86 is no different to other people of the same age, who do not have Pd.

[laglag in reply to JohnPepper]

Hi. I believe the tremors you mentioned when moving are called Essential tremors or Benign tremors? If you get tremors at rest then it's PD.

[JohnPepper in reply to laglag]

When I was diagnosed I knew nothing about Pd and as a result, did not know the correct description of my tremors.I was led to believe they were called 'Essential tremors.

If they are not essential tremors then what are they? I have described them many times.

[jeeves19 in reply to JohnPepper]

No. I have ‘action tremors’ John and I only wish I had ET. I’ve learnt that it’s shakey 😂 ground to try and classify a PWP. In 50 years time they’ll probably have identified 10/20 versions of it.

[ddmagee1 in reply to jeeves19]

How ya doin’ bud? I agree with you! Each person, with this hard to classify disease, has an individual course of progression, and symptoms. Probably PWP, have various strains of a disease that I would classify as a general neurodegenerative disease process, with involvement commencing with the substantia nigra part of the brain.

[jeeves19 in reply to ddmagee1]

Hey Doug, Always nice to heat from you. Just taken my Havanese out for a walk with my neighbours Hav as well (the breed is catching on now that people see my little mate. Gosh, I’m such a trend setter 😂). Hope you’re doing reasonably well and thanks for your insights on this post 🙏

[ddmagee1 in reply to jeeves19]

Thanks! Whenever I take my dog for a walk, and people walk by, sometimes people will comment on what a beautiful dog he is, and they will often ask the breed! Havanese are great as companion/service dogs, in my opinion! They are intelligent, and listen well, to commands, loyal, and good for those who own them, in my opinion! Hang in there, during this pandemic time!

[JohnPepper in reply to jeeves19]

I am sure I have Action Tremor as well, although I have always reff=erred to it as ET. Why would you prefer to have ET?

[jeeves19 in reply to JohnPepper]

Because ET is restricted to the tremor John and carry’s none of the more insidious aspects that Parkinson’s graduates toward e.g cognitive decline, insomnia, depression, constipation etc

[JohnPepper in reply to jeeves19]

Fro that I assume that I don't have ET because I have over 30 Pd symptoms.

Can we have both ET and Pd?

[jeeves19 in reply to JohnPepper]

According to that program I posted, yes. And I’ve always thought you had PD mate. Never thought you didn’t 🤔

[JohnPepper in reply to jeeves19]

Thanks Pal!

[blogger_7 in reply to JohnPepper]

John Pepper, Please don't tell me that since I have resting tremors I won't benefit from fast walking! I just ordered some Urban Poling Activator poles which were designed by a PT. "Benefits may include improved core strength, posture, balance, improved confidence for walking; reduced impact on hips and knees and increased endurance." urbanpoling.com/getting-sta...

[JohnPepper in reply to blogger_7]

No! Don't misunderstand me. My statement was a generalization. I have had much better results with people who do not have a resting tremor. I find that, because they are constantly aware of their Pd, because of the tremor, they tend to not notice improvements in their overall health and the fact that other symptoms ar possibly getting less noticeable.

Because of the above, they often stop the fast walking, because the resting tremors were still ythere.

Nothing I know of gets rid of the resting tremor. I am able to show people how to hide the tremor but I cannot get rid of it.

[lenamm]

There can be four types of tremors with PD - resting, action, postural, and dystonic. I have all four - lucky me! I have the rarer and not generally recognized dystonia dominant/med resistant which luckily has the best PTT outcome. There is so much variation - even though I have a lot of tremor I am not tremor dominant according to my MDS. My balance is fine and I have little non motor. My meds help my tremor but make everything else worse. I think you also have to throw us YOPD in a category. So long story short - most of us do not fall neatly in a category.

[Oceanflow in reply to lenamm]

Interesting about 4 tremor types! From your description I think I have two of them. Postural and resting , but very rarely either. What does PPT mean?

[lenamm in reply to Oceanflow]

Pallidothalamic tractotomy - the lesioning surgery I had

[Farooqji]

For these reasons I don't consult the so called "movement disorder specialists" and neurologists as they don't know even 1% about the PD. They have only learnt about some of the cardinal symptoms of PD (BTW learning of these symptoms don't need any medical College degree) and straight away put the patient on 3 or 4 available medicines which provide symptomatic relief for some length of the time. They can't do anything else than that. EthicalIy, the neurologists should not treat PD patients as they don't know the exact root cause and science behind the PD. In these circumstances a spiritual healer is better than the doctor for at least he can induce some placebo effect. On the other hand, pwp are the main source of income for these doctors. They sometimes misdiagnose people and put them on sinemet. I know a person who after 7 years of consuming of Ldopa came to that he actually don't have PD! There is a huge garbage of so called "research papers" written on PD and published in renowned journals which has no worth. They write papers just to Improve their own credentials and no one can challenge the contents as nobody knows about PD!

[Oceanflow in reply to Farooqji]

Interesting point of view.. So who (besides consulting this forum) do you consult or go to with your Parkinson’s health concerns?

[Farooqji in reply to Oceanflow]

The only physician I have is God

[Parkie- in reply to Farooqji]

"They write papers just to Improve their own credentials"

I came to the same conclusion.

[Pilot108]

With all my symptoms, Little response to levodopa and rate of progression as well as PET scan and MRI results, my new neurologist is seeing me tomorrow morning to possibly change diagnosis to probable MSA. Very similar symptoms to PIGD PD.

[jimcaster in reply to Pilot108]

I'll be thinking about you, Pilot. Best wishes!

[jeeves19]

So very sorry to hear that Pilot. MSA isn’t nice and I hope they’re wrong in that diagnosis. Keep us informed maybe?

[GymBag]

Similar , Groups , Types , Sub-types , Phases, Dominates,

CRAP

"Millions spent and I still can't tie my tie " Mickal J Fox

[pmmargo]

I am PIGD too just a tiny bit younger. How are you doing? I never expected that the balance degradation would be so aggressive. thought it would be gradual since my pd has been as well. Hope to hear how you are doing and any advice.