[harley]

how can a cure be found for a disorder that is so vastly different in every person who has it? not one parkie is like any other parkie in symptoms, nor do meds work the same in any parkie. there are those that believe that pd is a mental illness, some think its in our gene pool, others believe it is created by toxins, yada yada yada. somehow we all got stuck under the pdism umbrella, and here we sit waiting for a cure. a cure for what? an ism?

when i went to ohsu (oregon health and science university hosp), it was for a 1 1/2 hour re-evaluation. it started out with the usual "you have a very atypical form of pdism." i looked at the docs (yes, i had two) and laughed. then i asked what was typical, and what exactly was an ism? the session became 4 hours and i finally got at least some satisfaction when one doc did reply with the statement, "you are right, parkinsonism is an outdated term which should no longer be used." well, THANK YOU AND AMEN! after that stated, they referred to my condition as a movement disorder. this is much more accurate.

ok, so back to the question. what can be used as a cure for all of us sitting under the same umbrella but are totally different in every other aspect physically? imho, there cannot be a universal cure. this means the docs need to shut their mouths and listen to us talk and take seriously every thing we have to say. it is time to quit playing with the term "a cure for pd" which does nothing but put false hope in our minds. it is time for doc/patient relationships to become more personal so they are treating a person with a neurological disorder, not a patient with a pdism.

it is time for us to pay more attention to what is actually symptom, side effects or interactions, or the role that stress, diet and excercize plays on us.we need to be aware of our own independent movement disorder and keep track of things to the best of our ability and not just take all these bezillion different meds and sit and wait for a "cure". there is no cure for an ism. but there may be remedies for our particular type of movement disorder. if we are loud enough to make sure our docs know as my doc finally stated.. "parkinsonism is an outdated term and should not be used any longer."

[reverett123]

Medicine has a history of maintaining a "junk" disgnosis or two for "difficult" cases. We are the ones that clog the system.

Many of us have simply lost the ability to control our bodies and lives.

Many have lost the ability to maintain balance in the face of gravity and life.

Many have lost the ability to adapt to changes that come too quick.

These are not simple neurology.

[Conductor71]

Originally Posted by reverett123

Medicine has a history of maintaining a "junk" disgnosis or two for "difficult" cases. We are the ones that clog the system.

Many of us have simply lost the ability to control our bodies and lives.

Many have lost the ability to maintain balance in the face of gravity and life.

Many have lost the ability to adapt to changes that come too quick.

These are not simple neurology.

All so true. I can't help but feel I put myself here some how. In not being able to process stress and for my inattention to nutrition for far too long...here I am.

A friend recently had a consult with the Mayo Clinic for a second opinion on her PD diagnosis. She is very responsive to Sinemet but despite that, they gave her a PET scan and told her she has a "an organic, severe, neurological condition of unknown origin" but not PD. Huh? She is home and back on Sinemet so she can function. She was told maybe it was Dopa-Responsive Dystonia, but I am pretty sure there are tests for that.

Truth be told, I am actually starting to pity our doctors. They have to give us this junk diagnosis because no on has bothered to establish any concrete tests for this or any movement disorder. They can check us with PET scans or do cerebral spinal draws to check neurotransmitter levels for other conditions, but not us. Why is that? Where is science meeting clinical practice? It's not happening for us. They can objectively test for Myasthenia Gravis, a much more rare condition. There are no excuses any more for why we don't have similar tests. It's simply that no one wants to pursue it for profit. There is more money and glamour in trying to find a cure. Does not matter that they don't even know what they are trying to cure.

[harley]

there are many of us who have several years of meds under our belts which
have become enslaved to them. their interactions and side effects, and medications for the side effects, or the maybes of the side effects which mimic more symptoms, or complications of two or more meds interacting which may be interpreted as a new symptom, or the problems of withdrawing off of a med, or meds added to help in withdrawing from one med and then having to withdraw from that med.. egads, im getting dizzy just typing this. any way, how does one get to baseline? i will tell you because that is what i am trying to do.

ITS HARDER THAN HELL!!

laura, i feel sorry for docs at times too. there are still some left out there that really do care and throw their arms up with frustration of not being able to find out what is going on. they try every test they can think of and after awhile they get tired of it, so they put the "ism" lable there and it sticks.

the docs im tired of are the players in the game of big pharma too. ever see their little pens or coffee cups with a med name on it? that is called "kick backs". so, they push this med or that med "lets see what this one does for you". and we will dutifully take the med because we want relief. to the newbies out there... remember...MEDS ARE SUPPOSED TO MAKE YOU FEEL BETTER...if you dont.. stop taking it and tell the doc you dont want it. we do have that right. i for one am tired of paying for my docs fancy *** car.

i just wish the docs would quit playing God and do one thing. i want them to listen to me. thats all.. just listen

[just_me_77]

Food for thought:

What would happen to all the doctors, nurses, hospitals, assisted care homes, the drug companies etc. IF we were "cured"?

Can we not see that we supply them with a job and income for as long as we remain sick? Yes, I know some parts of "The System" function to help; but the final thing in my humble opinion is to a certain extent greed enters into this.

I know some think me mad: I have scars from "The Battle" to be mad. The fact is I hope one day "The Powers that be" will have a change of heart and truly want to "cure" us.

[harley]

yep yep yep 77. it is huge and difficult to trace where it begins. even many "so called" non profit orgs live off of pdisms. most of the funding that they get goes to "research". the admins of these orgs dont have pd or an ism yet they have fully paid jobs with benefits. how does research help those with pd or ism now? i have traveled alot and met many parkies in dire need of help.... then i hear one of the orgs have met their goal of 2 billion dollars!!! for research!!! i was flabbergasted!! 2 BILLION DOLLARS!!! you could buy a whole town and turn it into parkietown, a place where us pdisms could live on social security, not having to climb up stairs to a bedroom so small a bed cant even fit so you have to sleep in a recliner. or.... people in abusive relationships cant get out of them because there is a place they can afford to live with support and security. or being forced to live in assisted living because your family doesnt know what to do with you any more. or crawling around on the ground because you cannot afford a wheelchair. or not being able to get to doctor appointments because you cannot drive,, or or or or... i have seen all of this and had my own experience to justify my question... why?

2 billion... for researching parkinsonisms...


tsk tsk tsk

[vlhperry]

If you have had a Parkin gene test and have two mutations of your Parkin gene you qualify as having Parkin disease. You may not have symptoms right away, but exposed to the right toxin, you will be more prone to get it. The mutation causes a protein called alpha-synuclein to build up in the mitocondrial pathways. Eventually the dopamine neurons cannot get through the pathways and by the time symptoms appear, 80% of the dopamine producing cells are dead by apoptosis.

The disease does exist. I have it. It has me. I can no more shrug off the symptoms, the need to take pills or the psychological effects of the illness, than I could run a marathon. I could not run one anyways as I have a tipped uterus and pee on myself at the slightest jolt.

How I live with the disease defines me, not the disease itself. I exercise frequently. I ride a bike. I play in musical groups. I do not waste time worrying about the future. Carpe Diem, seize the day. I am more concerned at this time because my husband and I are stuck with a reverse equity mortgage and are loosing our home. Most states have made this type of mortgage illegal. Our state made it illegal, but for us it was too late.

Parkinson's disease, Parkinsonism, dystonia, whats in a name? Would your symptoms, given a name, make your life sweeter? Would you be happier if you had cancer, which could be fought with chemo? Depression, which is a real killer? A brain aneurism, found only after it has burst, and killed you or made you a parapalegic?

I have an idea! If you lack the genetic mutations, lets just call the isms movement disorders. Will this improve your quality of life? Maybe it will be easier to find a cure for a disease called "Movement Disorders" rather than Parkinsonism. Don't think so? Neither do I. But we have one opportunity for a life here on earth, and I do not want to look back at it regretting the waste of time forcing others to understand me, feel my pain, or spend money to find a cure. Most of them have the same problems my spouce and I have.

Anybody know a good, cheap, apartment that doesn't mind bad credit records?

[paula_w]

I'm very sorry to hear about your home loss Vicky; the only bright spot could be that whatever you move to may be smaller, simple to take care of, and that you get rid of everything you don't need. Downsizing completely was partly forced on me and partly done voluntarily and the biggest advantage has been less to maintain and simple enough for me to personally do it.

some ideas regarding the cure:

Do clinical trials have subtypes included as they now know about them and test them all with that category included? No one should be excluded from a potential treatment. For us to get a treatment.a certain percentage of pwp have to get better from something. Shouldn't all types be defined as best they can with what they've got? Maybe this is being done already. In my own case, why did it take so long for me to get on a pill that is helping to regulate the other transmitters and result in my feeling good enough to go out to get physical therapy [thanks to PAN for all the work on no caps!!]and join a heath club to work out 3 days a week

We already know that some people may not respond, we already know some are going to respond to the placebo. Shouldn't we be really looking at what the differences are between these people? Are the patients scrutinized for subtypes in any way as a routine in clinical trials or are we waiting for that silver bullet too?

It may not be a conscious decision, but people are just slow on the job. There is so much to tackle and once committed to something it goes as long as the money comes in, not because people are really waiting for it. And during this time CEOs are looking at the bottom line through mergers, partnerships and selling branches of the company.....oops there goes the pd pipeline for one company over to another company. Are we then to cross our fingers that the research and development in the new company has a parkinson champion?

If there are isms and movement disorders [and i agree that those terms are reality, have no problem with them], but we must plunge wholeheartedly into identifying the differences.

Could we be throwing drugs away that work for certain subtypes because there weren't enough of that subtype to meet their endpoints?

[harley]

Originally Posted by vlhperry

If you have had a Parkin gene test and have two mutations of your Parkin gene you qualify as having Parkin disease. You may not have symptoms right away, but exposed to the right toxin, you will be more prone to get it. The mutation causes a protein called alpha-synuclein to build up in the mitocondrial pathways. Eventually the dopamine neurons cannot get through the pathways and by the time symptoms appear, 80% of the dopamine producing cells are dead by apoptosis.

The disease does exist. I have it. It has me. I can no more shrug off the symptoms, the need to take pills or the psychological effects of the illness, than I could run a marathon. I could not run one anyways as I have a tipped uterus and pee on myself at the slightest jolt.

How I live with the disease defines me, not the disease itself. I exercise frequently. I ride a bike. I play in musical groups. I do not waste time worrying about the future. Carpe Diem, seize the day. I am more concerned at this time because my husband and I are stuck with a reverse equity mortgage and are loosing our home. Most states have made this type of mortgage illegal. Our state made it illegal, but for us it was too late.

Parkinson's disease, Parkinsonism, dystonia, whats in a name? Would your symptoms, given a name, make your life sweeter? Would you be happier if you had cancer, which could be fought with chemo? Depression, which is a real killer? A brain aneurism, found only after it has burst, and killed you or made you a parapalegic?

I have an idea! If you lack the genetic mutations, lets just call the isms movement disorders. Will this improve your quality of life? Maybe it will be easier to find a cure for a disease called "Movement Disorders" rather than Parkinsonism. Don't think so? Neither do I. But we have one opportunity for a life here on earth, and I do not want to look back at it regretting the waste of time forcing others to understand me, feel my pain, or spend money to find a cure. Most of them have the same problems my spouce and I have.

Anybody know a good, cheap, apartment that doesn't mind bad credit records?

i have a room for rent vicki..

[moondaughter]

I think time itself confuses everything.

There is no end point as we keep recreating ourselves - some transformations just take longer right guys? how do we know what fundamentally moves us towards optimum health as regards diet and drugs when we may not feel the effects of what we do immediately or even in a day, week, month or years??

If we want to learn about drug effects we would need healthy people to volunteer to take the various drug cocktails and observe them. (i wouldn't wish this insanity on anyone) . it has long been established a drug(in a small amount)that can cure symptoms can also cause the same sx in a healthy person (in a large amount). everything in moderation i say

do pd drugs also enhance cognitive function? Reading this forum I would say a big YES!

How can we as a community make a real difference in each others lives?? maybe pooling resources for those of us by joining in sharing homes and caregiving would be a good place to start. I'd like to go to Hawaii someday..........

md