non- tremme PDr

[cjsg]

Anyone know anything about PD without tremmers? We went to a new movement disorder doc yesterday, and he said that non-tremmer PD was worce than kind with tremmors. We got onto something elce and didn't remember to ask him to explain.

[Hidden]

There are two major forms of Parkinson's, Tremor Dominant and then (PIGD) Postural Instability Gait Disorder. PIGD advances quicker and with more severe symptoms

[cjsg in reply to Hidden]

Thanks RoyProp. You always have good information. Now that I have a name I can do some research.

[Nehd in reply to Hidden]

What kind of symptoms. Like dementia incontinence etc

[Hidden in reply to Nehd]

Patients like me data

patientslikeme.com/conditio...

reverseparkinsons.net./arti...

National Parkinson Foundation - Joseph Jankovic, MD

What are the different forms of Parkinson’s Disease?

youtube.com/watch?v=pf6BGBl...(Not working as expected?)

[bartogirl in reply to Hidden]

Yes,and that is what my husband has and now is in last stages of advanced and headed to final stages,

[AMHACK in reply to Hidden]

thank you very much for your very useful knowledge I was diagnosedparkinsonism secondary to a growth on my left posterior thalamus.and it first I had severe tremors but this seems to have went away now Celeste 3 & 4 years my motor have deteriorated drastically but I wasn't aware other other type of Parkinson's

[PositivePen]

I have non tremor PD and it has NOT developed fast at all. In fact I am mildly affected in comparison with those I know who have a tremor. We are all different and PD is not one condition - everyone has differing symptoms. Do not worry about the future just live every day to the full.

[Jocee]

Not true. I had PD for over 20 yrs without any tremors at all. It progressed slowly. The very first day I had tremors (and have had them ever since) is the day I was on vacation and got a call from my son that he was in jail. STRESS can cause non-reversible symptoms. I'm sure the doctors don't believe this, but it's true. (at least in my case)!

[Coblrman]

i have nontremor but what is normal?

[jdc3]

The problem with telling people like me that my non-tremor PD will probably progress faster and more aggressively is the placebo effect, which can be negative as well as positive.

It becomes a self-fulfilling prophesy. One's disease progresses faster than it would have if one never was told the news. This is a danger of belonging to support groups - you hear a lot of bad news.

Remember we're dealing with averages. On average PIGD is worse - this says nothing about a particular individual's prognosis.

[Hidden in reply to jdc3]

No problem or danger, as a support group we only speak in vague generalities and Never/Do Not copy for distribution what professional neurologists and researchers report.

Better we follow my neurologist's advice when I was diagnosed. He advised me NOT to turn to the internet for information about Parkinson's

[racerCP]

Parkinsons comes in two forms, tremor dominant and stiffness dominant. It's almost half and half of all sufferers have one or the other. Statistically stiffness dominant Parkinsons is a quicker progression than tremor dominant and the tremor-dominant type has a smaller percentage of people who get alzheimers. But statistics have nothing to do with any individual outcomes. So just enjoy your life and make the most of it.

[paddyfields in reply to racerCP]

In my trusty reference book it says up to a third of people do not present with a tremor initially although they may develop this later.

By the way, wouldn't have to go on websites if we were told anything at the time of dx. Fortunately I knew about PD UK and was able to speak to someone on their helpline for reassurance

[cjsg]

Thank-you all for your input. My hubby hasn't had his meds changed in over a year. When he was first diagnoset the meds changed with every visit. About 6 months ago my hubby started a Delay the Disease exercise program 3 x a week for a very intense hour. His balance is great, He walks tall, if he talked louder you wouldn't know he has PD. His mind is very quick and sharp. He lives every day to the fullest. I am glad we didn't get into it with the doctor.

[Hil101]

I'm a bit late coming to this post but just to say that I'm glad to read the more positive comments which fit with my partner's experience. He has non-tremor PD. If you do exercise which is relevant and avoid listening too much to the naysayers, you can do well and stay stable. (See Norman Doidge's book re John Pepper and Feldenkrais lessons) That's our experience anyway. My partner has been on a stable, middling dose of dopamine agonist for years. However, his neurologist has the most negative mindset I have ever come across and if she was a cancer specialist, she'd be sacked. If told of anything positive, she spends time stressing the downward progression as the only option. This is such a nocebo that it took my partner ages to realise that it isn't always like that and that it was worth him trying exercise and other things. She had told us on the first visit that physiotherapy etc would do no good. it still makes me furious to think of the damage this attitude does. It's a terrible diagnosis to be given and a positive mindset makes a difference.