[mo1225]

I used to write in this forum back in the 90's, when both my diagnosis and this forum were new. After the initial shock and devastation of the diagnosis of PD at the age of 41, the friends I made in this forum contributed support, information, travel and friendship in a way that balanced out the darkness I had been feeling.

However this period of my life ended six years ago when a spinal infection and multiple rehab surgeries, too many to count, left me flat on my back unable to focus, much less type. But now I'm feeling a shift. Dare I say it, I feel like something is getting better. My recovering from this infection and surgery has certainly muddied the Parkinson's waters. I can't tell what is PD and what's not these days, all I know is I'm feeling a little bit stronger and a little more hopeful.

So basically the past six years have been spent with nothing else to focus on but my body, and the strange sensations and how they relate to my ability to move. Having studied yoga for thirty years, I was heartened when two years ago VANITY FAIR magazine published an extensive glossy photo spread on current yoga masters. The one paragraph of text contained a question posed to a doctor from a New York hospital. "We all know yoga is good for relaxation but does it really help your health?" The doctor replied, "Absolutely. Yoga is unparalleled in it's ability to manage the lymphatic system, which is "the river of life in the body".

After all those surgeries I found this river of life reduced to a mere trickle. I desperately sought answers in the medical community but was disheartened to find that the truth of a statement I once heard from a masseuse who works in lymphatics. She said, "Western medicine is in the dark ages regarding lymphatics" Sometimes I wonder if the stilling of this river may have some connection to the sensations and symptoms of Parkinson's disease. Neurologists look at me with dismissal and disinterest and send me off to the psychiatrist. So that is one of the reasons I am back at a place were the voice of the patient can be part of research- the forum.

One of the things that helped boosts my movement potential has been my involvement with Hubbard Street Dance Chicago's Parkinson's Project. Check out this link which shows a similar project being run in New York City.

youtube -When I Dance Parkinson's Project

Other topics I look foward to exploring are alternative therapies, nutrition, psychology, and spirituality. Hope to hear from a friend of two or a few new faces.

namaste
mo

[Jaye]

I'd try to answer, mo, but I'm moving and in the transcontinental road trip phase right now.

Weekends are slow. Many people have computer access at work only. Things will pick up soon.

J.

[GregD]

Welcome back Mo. I remember you being here back then and had wondered where you got off to. Sorry to hear of your spinal infection. I hope things continue to improve for you.

GregD

[reverett123]

Come in from the storm. There are a couple of dancers on here. Fiona is a pro from NYC currently on sabbatical. Bob Dawson tries hard. Myself, I hop around more or less on the beat.

Each of us deal with PD in our own way. I am trying to beat it by sheer brain power and the accumulation of facts which I post either here or on one of my two blogs-
A Matter of Balance or BrainStorm.

Your thoughts on lymph are interesting, particularly with the state of inactivity I often find myself in. No pumping action.

[moondaughter]

Your thoughts on lymph are interesting, particularly with the state of inactivity I often find myself in. No pumping action.[/QUOTE]


Hello Mo,

Circulation is one of the most integral functions of our entire physiology to be sure including our subtle energy systems. In Chinese philosophy doesn't the saying go blood follows Qi? I have experienced very palpable relief from Cranial Sacral therapy which encourages circulation of cerebrospinal fluid.

I've had some difficulty for the last couple of years with my ear sort of closing up after a shower and suspect poor circulation in my eustachian tube.

Have you tried massage??

regards,
MD

Hi there, Mo... nice to meet you!

I'm pretty new here, and mostly lurk. I had a PD diagnosis for several years... This past spring, my MDS changed it to Atypical Parkinsonism, with a very positive outlook for the future. I never believed the PD diagnosis to be correct (based upon my knowledge of the facts), and expected this would happen eventually, but even so, it was very stressful and unsettling. Looking even further back, the initial PD Dx was absolutely devastating to me and my family, and the drugs used to treat it were (and still are) just about as bad. Whether I have/had it or not, PD destroyed my life, but I'm takin' it back the best that I can.

I was exposed to manganese dust and fume many years ago. I've learned it's impossible to get objective medical treatment. Neurologists and traditional Western medicine in general are stuck in the clutches of big pharma, insurance companies, lawyers, etc., and so their services now comprise only a portion of my health care. I'm doing much better, now, as a consequence.

Perhaps unsurprisingly, therefore, I share your interests in alternative therapies and healthy strategies. Yoga is definitely in my future. I've been lucky to have experienced some benefits from therapeutic massage in the past, and hope to have the opportunity again. I'm currently in the process of weaning off of sinemet with my MDS's approval, and let me say-- it's tough. But then, after reading this forum, I knew in advance that it would be. (Thanks, all, for that.)

I'm limited to what I can share on the forum, but, despite a low level of public participation, the first-hand information and observations from others has been incredibly helpful. No: "enlightening." And while it's true that what works for one person may not work for another, I've had my mind opened more than once from having read the posts on this forum.

Much of your post, Mo, evoked feelings and thoughts of awakening after a very long nap, for instance, and of becoming newly aware. I identify, and look forward to reading more from you.

--Onward

[Aunt Bean]

Welcome. I dance My body moves so freely when there is a song in my head. I enjoy contra dance (which is like square dancing in a big line) My motions in the garden are even a dance as I make raised beds > My mattack usually goes so many counts and then my foot..side ways-kicking the dirt up onto the area which will be a raised bed. I've taught my friend to to the "viine" line dance step when she can't walk very well...we can dance to where she needs to go & it's fun and a distraction at the same time.

[trixiedee]

Welcome Mo... I do yoga and find it very healing, however it has taken me years to find the right type of yoga - I do Scaravelli which is deep, slow and relaxing. Restorative yoga is also good. I believe rebounding is very good for stimulating lymph drainage, and of course massage and craniosacral therapy. On the subject of fluid - after reading Bob Dawson's excellent post and blog about Continuum Movement, I participated in a workshop which was excellent. Read about it here - http://www.continuummovement.com/ and I recommend the book, Living on Land.

Namaste

Trixiedee

[paula_w]

so glad to see you here. i hope that means we get to read you again. did you see that barb davidson has also rejoined? people here are wonderful and will drink your fabulous writing in like a fine wine. i'll be in touch.

paula

[mo1225]

Looking for friends, information, and inspirations....I'm amazed at the prompt and intriguing replies to my high tech "message in a bottle" tossed out two days ago on a whim. My body was going into its new mega rigid phase where even getting a breath is discomforting to say the least. At least I was safe on my bed; the most recent epicenter of my steadily diminishing geographical world. And I had $10 an hour college girl/ typist for a few hours.

Lately I look to see if i can focus the mind as a way to keep the mental/emotional bodies from becoming as out of control as the physical. Though at times I attempt to keep at least a few of the unraveling threads of my life intact; financial matters, returning an email from a friend, clicking on a news headline in order to appear current with world events; in reality my task completion grade is c- at best and as a teacher I was always an easy grader.

Working in collaboration however really is quite transformative; quite B+. This fall i hope to get a a volunteer from the local catholic high school that
requires a junior year service project. I am convinced that keeping the mind and emotions positively engaged releases trapped
energy.

The information you all mentioned has indeed been an inspiration to me and I look forward to communicating and collaborating with friends old (paula was my first parkie cyber contact and remains her supportive self with her post) and new.

I wish to challenge myself to post a thread or a response everyday for a week.

thanks
mo