This is something that I've just started doing. It kind of silly, but it might help. I've started telling myself that I care about me. I look at myself in the mirror and talk encouraging words. Example:
Max, I'm really proud at how well you're doing.
I'm happy to be me.
You are a good person.
I will take better care of you.
I love you. Max


I've been so hard on my body most of my life, took it for granted, never really took good care of it. I took better care of my cars back then. I think it's important to let your body knows how much you care about it no matter what shape you're in. If your body knows you truely care, maybe it want to get better for you. Who knows, it couldn't hurt.

Max

Thoughts shape actions, actions shape results. Words can shape thoughts.....I so believe in this. I have been working with this idea, too, telling myself out loud "hey, you know you can make all the dopamine you need any time you want....." It's a process, but I think this is very valuable.

I read the book 'Your Body Believes Everything You Tell It'. Overall simplistic but it's like the placebo effect it has been proved it does work for a period of time. Maybe enough time for the healing to begin. I practise positive talk now as well.

When I am freezing, it helps to talk out loud to the various parts of my body. "Left foot! We're going to walk now..." Mad as a hatter.

Also, when I have early-morning dystonia I talk to the foot involved and it relaxes.

Given the importance of the brain, one wouls expect redundancy and a verbal emergency command system for the voluntary muscles would be a no-brainer.

I'm spending time in Pennsylvania around family left where i grew up. There are a considerable number of them, especially because my father remarried several years after the death of my mother - into a large family.

My upbringing was stressful - very negative in my own house. My maternal extended family was great and we were very close to my grandmothers, aunts, cousins and uncles on my mother's side. Fewer on my dad's were in the area or that close to us but his second family is close to us. i am one of four children and we are all close to this day. But living with them is still a challenge because the work ethic here is primo! I'm not looking good in that department after 20 years of pD. And the guilt! There is much OCD in my family - some diagnosed, others just obvious but not diagnosed. People with OCD have to have things just right. I"m not sure how much of this is culture of pA or pathology of OCD.

Consequently, I grew up feeling like if something went wrong, it was probably my fault. I'm told when I make mistakes [ and oh do i make them physically - like not closing something properly]. As a child, I was bright but catankerous [can you imagine?] i was devastated when my 6th grade teacher gave me a check under the behavior "lack of self control" one time. Only once!! i couldn't have been that bad. Don't remember any other checks. But my picture of myself is bad, not listening, getting a crack here and there, yelling, beginning with colic.

And then there are the friends of relatives who point out how worried the deceased at funerals were about me.

Did anyone notice how creatively i lived my life? Teaching degree and job as a speech pathologist at 21. Masters degree at 28 in Hawaii where i moved to and lived for 10 years. Taught at Pearl Harbor - yes - the Pearl Harbor.

Had two children who are beautiful and talented. Then the evil PD struck and life did another 180.....suffered quietly for 8 years, went online and met Michael j fox - chatted with him for a couple of years privately. this is not normal - this was an internet phenomenon and we asked ourselves all the time - why us? why did he drop in on us? the answer is simple - this chatroom at the time was different but just as good in its own way as this forum is now.

Family took a nose dive and i was helpless to stop it. i had no energy, there was fighting and disobedience, disrepect. I was getting support online from MJF - which to choose? Fighting or the best wit in the world? Consequently, my natural tendency to think i am the bad one at fault kicked in big time and i am still fighting with the feeling that i was not a good mother.

With my grandson i was determined to get it right. I told him what was good about him, how much i loved him,. positive positive all the time. Praise in the place of criticism. I did this with my girls too, but work and extra-curricular activiites left us tired and grumpy a lot.

The point is here - is pretty obvious. i don't think i believe that i can be cured of pD. But i do belive that i can still have a better quality of life.

Here's what i see tho: we can't do it ourselves. if y ou leave it up to me to be reliable to myself it won't happen. THere is a wonderful, long article on the MJFF site about exercise. Sure we need exercise, b ut who is going to take me, who is going to guide me, bring me home. DO i have to join something? i don't have a driver to get me anywhere and if i have to drive myself on a regular scheduled time - haha - not going to happen.

SO yes i believe that we can feeel much better than we do - am proving it right now - doing yoga and walking now that the feeling of dying has passed [infection in gums and teeth pulled]. i was so sick.

Now to work on the guilt. I'm around people who think they MUST be productive till they drop at night. They are so structured [and i do need some structure] that they tape all these programs from show time and watch them every night - in order. if i talk, they rewind and listen to the part i talked over. i asked them if there was stress involved in getting them all viewed.

What am i trying to say......i think i'm trying to say that i believe we are told too much negative prognosis, altho my neuro did tell me from the beginning that some people do not progress as much throughout their lives. I"m trying to say that at the next funeral, i wish someone would comment on what i've done instead of how cantankerous i was as a child and how much i worried my grandmother.

Guilt free, without judgement from or of others is my goal. PD will improve accordingly. Some people hold you responsible for your condition and don't believe your inability to produce. Screw them.

I don't think its as simple as it looks in writing. But the mind is a very powerful thing and it is flexible, changing....this forum is living proof. THere used to be so much nonsense and fighting. This forum is good enough for everyone involved - doctors, therapists, researchers, industry, investors, - go get them and bring them here. .

Then we'll talk positive to all who need to hear it. Positive as a team. Our positive protocol needs to be developed and must include transportation..
gosh sorry so long......i'm at a crossroads personally so it won't be the last one i'm afraid.

self-loathing is a killer.

paula

paula-

I'm not going to tell you anything you haven't heard before. The problem is not you, it's the family legacy. You have tried so hard for so long that you have paid a terrible price. That needs to be recognized even if it is only by your own face in the mirror. And it needs to be done every day. If you haven't already done so, try to have a few minutes each day where you stand in front of a mirror and look into those eyes. Remember her as she was at different ages and talk to her. She's still in there. Tell her she is a warrior and a hero. She is. And that is a good and noble thing. She was always trying to do right. Sometimes she failed. She was a human being. Not superwoman as she had been led to believe. Picture all those little girls taking the flak and criticism where there should have been praise and tell them that they will make it and that you are their champion. You may have limited power over the present and even less over the future, but you have great power in your personal past. Try it.

In the old BT forum, we once got into our individual histories and found that we had something in common - most of us had been through one form of hell or another in our lives. We have a wide range here, from a child facing the terrors of the Blitz to those of abuse and everything you can imagine. It is no secret that many of us are in AA or have kicked one habit or another. That self destruction, whether by sex, drugs, rock 'n' roll, or 70 hour work weeks has been at the edge of our lives much of the time.

Life has been tough. My own included, among other things, an abusive alcoholic father whose rage was directed at my mother. I finally found myself standing in his path and praying that he would stop his charge. He did and I will never forget the look in his eyes. I was eight years old. No child should have to have the experiences we have had.

But we did, indeed, have them. Each his or her own collection. And we are weary and fragile. No one knows what we are up against even today. But we know. Honor what you are whenever you have the opportunity. Love yourself - you're good stuff.

one day at at time
and we choose to live it all over again - in the past
or let that old resentment go
so we can have a present -called "now"
we can not blame anyone for illness -
we can theorize but it does not heal -think outside of our limited brain
think about heavenly things -
I tell myself that I will

Paula, in my view, you are such a hero. I have some sense of how valiantly you work with this cause, and the amount of difficulty you endure. Knowing that you feel that you won't be cured of this, how even more inspiring that persistence is. It was great for me to hear more about your personal history, and I thank you for sharing that.

It seems like there are so many things that could 'cause' our condition, and I, for a long time, have felt that my particular case is the heritage of multiple generations of wartime stress and terror. But it could also be precipitated by this toxic soup that we seem to be living in and consuming, as its parameters become more evident every day...I don't know.

And Paula, I can't tell you that you will or can be cured, because maybe that's not the case. And maybe it's not even the point. But I really do hope that you feel better, that every positive step radiates back energy to you manifold, because you so deserve it. What a fighter.

And I really think we need help, too, from knowledgeable people to guide us and who could somehow operate in spite of the profit margin, or around it or thru it or something - and also from our communities and families who could recognize us as the bearers of an underlying condition of all rather than the unlucky ones to be shunned in case it might be catching - and I think we need some kind of chemical help from something to counteract the conflicted motives underlying our current conventional treatment...

Meanwhile I love your story of life success, Paula, and celebrating it and staying connected to that just seems so vital.

Paula,

Thank you for sharing your story. I don't know you but I have heard and seen your name bouncing around on various pd websites for a long time. What an activist you have been for many years, and what a history and the people you have met and talked to. I admire you to say the least. And I am glad I found the opportunity to tell you this.

I hoped to meet MJF, he is incredibly funny. He said he use to lie in the bathtub and submerge himself under water and think why me? I could relate. I have yelled to the big "G" in the sky and said I am sick and tired of having this! Why don't you take it from me and have it yourself and see how you like it!

I did meet Lynda McKenzie another person I admire after I saw the award winning documentary on 'The Nature of Things' about her cell transplant. I told her I had seen it and she asked if it scared me (I was in the honeymoon period then) I said "no it inspired me".

Sometimes I wonder when posting about curing pd or how good things may be going with all the enthusiasm in the world if it is insensitive to those who are going through hell, are further down the road than myself or have limited options. Because I have also been there myself at times.

The energy of a newbie is a wonderful thing but I cringe when I think back to my earlier years of activism. I was so optimistic and now 13 years later I am much more sensitive to the struggle of others. When David Foster said to Neil Young to try and sing 'You are the World' in a different way Neil Young said "that's my style man"

I guess what I'm trying to say is that I embrace everything and everyone who posts on this forum. And if I come across as 'Little Ms. lets get better' it is my way of coping and 'it's my style man'