[reverett123]

I just thought that I would point out that this is a big place and PD is just one corner of it. Just go up and click on the NeuroTalk logo. There are dozens of support groups and most are open to all. There are almost one thousand people on here right now! Not just registered, but actually logged on and having fun.

[vlhperry]

I am sorry for taking so long to respond. I am looking for a friendly community and educated. I am not a sissy. No one who has PD is. I do not believe in " group Advocation" for Parkinson's because is such a huge difference in symptoms. I cannot remember life without PD. I have put neurologists and directors of movement disorder clinics on the seat of truth and questioned them seeking the truth. None of them knows what the truth about Parkinson's disease. The doctors back when I was diagn9sed in 1989 were afraid to admit they weren't sure. Others were arrogant and caused pain by rediagnosing my medical problem based on my personal past.

I forced one neurologist who refused to listen to my calmly stated question, "if I don't have PD why is Sinemet the only drug that controls my symptoms?" His diagnosis was based on false assumptions made on my pschiatric evaluation. I proved my diagnosis was correct with a gene test and a FDOPA scan. I know what I have through my own efforts. I am involved in Dialectical therapy which means living in the moment. I am attempting to retrain my brain to be neuroplastic and grow new neuron pathways to control the symtoms caused by my drugs or disease. I am different from others but continue to interact with those without the illness and enjoy my life. I feel totally accepting of the person I am and no longer ask "why me?" Why not me. Because I live in the moment I do not feel a pressing need to do the professionals' by researching a conclusion as to why. It just is.

[Conductor71]

Dianna,

Most of us here believe we have tremendous power for self healing. We often post on that very topic. Moondaughter has started many good threads on it. Traditional medicine does not see that we can do that, so instead we are put on meds that in my eyes are highly addictive.

We do post a lot of medical and science mumbo jumbo. I do not ask why me, but my PD was negatively and permanently worsened after my neuro claimed something was true and it anything but that, so I am driven to keep one step ahead or at least in pace with my doctors in research.

Please stick around and share with us your dialectical therapy (is that like existential based therapy?) and how you are planning on rescuing your neurons. Have you stopped meds yet or are you doing so right now?

Laura

[ol'cs]

What are educated people? Just ordinary people who read a lot, they are no different because they read a lot. Even if they read everything that they can, they are just aware of judging what information that they choose to accept as truth. There are many here who are into the scientific side of PD, but we are suffering from the "same.disease" , so are all equal because it just does'n matter what we know, just sharing the experience is connecting.

[vlhperry]

I disagree with your statement. I volunteer with Special needs children; Mostly autistic. I made the mistake of assuming they were like me. I tried to find a way to communicate with them. But They do not see me as a human, sharing their humanity. To them I could be a chair or table. From the many books about thr brain recently, the most common term is neuroplasticity of our sences. Norman Dodge, M.D. If you are interested check out his writings.

Sorry, to tired to type now. I can't begin to count the zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz I've had to delete.

Dianna

[Songfellow]

Originally Posted by Dianna_Wood

I disagree with your statement. I volunteer with Special needs children; Mostly autistic. I made the mistake of assuming they were like me. I tried to find a way to communicate with them. But They do not see me as a human, sharing their humanity. To them I could be a chair or table. From the many books about thr brain recently, the most common term is neuroplasticity of our sences. Norman Dodge, M.D. If you are interested check out his writings.

Sorry, to tired to type now. I can't begin to count the zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz I've had to delete.

Dianna

Dianna, thanks for this. I've already done a bit of looking today. Here's one link I found:

http://www.positscience.com/brain-re...ain-plasticity

I'm impressed by your willingness to work with special needs children. It requires so many traits in a teacher that very few of us share.

Thanks again.

Steve

[ol'cs]

I am not talking about those who have other conditions. I am talking about us ordinary folks who had jobs families and lives that have been devastated by PD. We were once "normal".. And I have always said that. PD is a " snowflake" condition, different for all in the severity of symptoms that we display.

[lindylanka]

Dianna,
Neuroplasticity is quite something. I have been looking at it since well before diagnosis, when I was working I sometimes did sessions with stroke victims, and was hugely impressed with how doing the right things helped recovery, and how those who were encouraged to do such thing did so much better than those who were not. My big grouse about the medical profession, as I get to experience them here in the UK, is that there is zero emphasis on anything to do with any level of recovery, so exercise and therapy play no part in anything unless you are really old and then you get a mixed group of elders who are all, regardless of condition given the most minimally challenging movement class, with wooden steps and double bars, long breaks between each minimal 'exercise' and mini mental status tests that rely on 1970's TV programmes.

I relate to your experience of doctors wanting to try and rediagnose, that is my experience too.

This combination, along with a dogged determination that PD will only respond to medication and surgery is driving me wild. However there are people with other conditions, also neurological who are not yet recognised, so perhaps there is cause for being just a little grateful!

I would love to see PwP given an option to embark on some catch up process similar to stroke care, especially as there are some programmes that are suitable. In the meantime, all we can do is push for this stuff, as many of us as possible.

[vlhperry]

Originally Posted by ol'cs

I am not talking about those who have other conditions. I am talking about us ordinary folks who had jobs families and lives that have been devastated by PD. We were once "normal".. And I have always said that. PD is a " snowflake" condition, different for all in the severity of symptoms that we display.

So was I. I still consider myself normal (if such a thing exists). Manic depressive people are "Normal". So are schizophrencs, and others suffering mental illness. We are all normal with specific areas of the brain that are weak and challenge us.

We can hide in the dug out or get up and take our turn at bat. You can shoose how to deal with your challenges in your way and I can choose mine. No Judging allowed or being forced to explain why you have made your choice.

Good Luck,
Dianna

[Bob Dawson]

Originally Posted by Conductor71

Bob,
....I take forum "holidays" now and again to keep it real.
Laura

Didn't I meet you at the World Arm-Wrestling Championship in Zagreb in 2010? Remember, I was representing Albania, and got disqualified for tickling my opponents with my free hand?