[dopadoc]

If you had a message you most wanted the public to know about your experience with PD what would that be?

[AnnT2]

I would want them to know that while they may look at me with curiosity, pity, and a touch of horror, they should be aware that they are not safe from this disease. Many of them are just temporarily healthy and they may some day have ownership of Parkinson's themselves. Be aware of Parkinson's and donate to the research for a cure. They may very well be helping themselves.

Ann

[paula_w]

The point if i was only to make one would be that parkinsons is no longer just an old persons disease. even if they are still the majority, chances are they have a different thing going on.

I don't think there is much we can do for people who have no experience with the chronically ill or disabled. I think it must be experienced and losing your grandparents at a ripe old age [and for kids that's 50 haha] doesn't count. It's not the same thing it would have been had they suffered with pd the entire time we knew them, as our own children are having to do.

Handicapped people were like....well without ever putting it into these words but subconsciously i thought of them as weak, and basically ignored them

My bachelors degree is in speech pathology, i was a speech therapist for 2years and found it very repetitious. Getting 600 s instead of th sounds per child was boring and then the next group came in and i had to get 600 r's instead of w.

After getting a masters degree in special ed., i taught students with learning disabilities for 9 years. I had two of my own children during that time and was getting burned out. So i went to the principal and asked what other possibilities there were and she asked "how about a physically impaired class?" These students were like aliens to me, they had physical deformities , had to be catheterized, had to have their trach tubes suctioned out. had to be tube fed....and then there were the physical therapy needs. We had to program machines that would talk for them.

Now i feel their pain. I always understood why they were compassionate with each other. Memories going back to my asistant, Greta, a real alien from Barbados who never became a citizen but just renews her green card, double -teaming it with a heave ho to let those kids stretch out on the floor during math time or stand them up in standers so they could stretch their legs and put some weight and feeling back into them. iT pains me that they are all mainstreamed. It should be called "painstreamed."

It is not difficult to see the irony of being a speech therapist, teacher of learning disabled and teacher, nurse, therapist and caregiver to the physically impaired, and then becoming all of those things.That is a spiritual sign to me about purpose, because my life has been very much led and so will my future be. ok now it's about me but no, it isn't.

My speech races and becomes inaudible.People always ask me to repeat. IT doesn't sound soft on the inside so when i get louder i sound stern or too loud inside. i have noticed some pwp who talk so fast it takes talent! i just mumble and make quite a few involuntary sounds when i am thinking or just awake doing anything. anyone else notice that about themselves? This makes us seem even stranger. It's pretty hard to explain to a layman how strange we look and convince them that our community includes some of the very brightest people.

I'm ADD in many ways but the true definition has nothing to do with intelligence, and last but not least, i am physically impaired.

I want the lay public to understand that lesson before they have to learn it the hard way. They need to understand that we are in the prime of our lives, or younger, probably very very bright and interesting people, not just a lady in a wheelchair or a man with a cane. and we can talk- you just have to listen harder. learn how to interact with those who are impaired- overcome the accompanying paranoia in social situations. I am like lucille ball; can't go anywhere without being embarassed or tripping or doing something to attract attention.

well older version of chatty cathy has to go get 2 more teeth pulled. then start the new stuff - two partials and a bridge should do it. Then i'll probably get run over by a truck but i will go out with as much of a smile as I can muster.

Sorry for length. Well not really. but i am supposed to be I guess. everyone else apologizes for length but i like reading people's stories.

patience, respect and compassion, understanding just how hard it is. "feeling our pain"and start emphasizing our youth. Don't just put elderly on the website pages.

That's just for laymen right? I'd have a different list for doctors.

[reverett123]

I would want them to realize that there is something quite mysterious about PD and that it is getting more and more personal as it appears in younger and younger age groups. In short, that they and those they love are at risk, that the threat is systemic in our society (affecting all demographics), that it threatens to bankrupt the health care system, and that an "Apolloesque" push is called for.

[mrsD]

Other diseases are showing up in younger and younger patients too.

Based on NeuroTalk posts, Myasthenia Gravis, and Peripheral Neuropathy have many more younger posters. The ave age of males in the past for onset has been 50 or older, and now we have 3 young men (one who just finished high school) with it.

Same with PN. PN however has over 100 causes, and can be considered an environmental result of poisoning of some sort, RX drugs, pesticides, chemicals, vaccines included.

[Conductor71]

If I may quote Linda Herman...."Parkinson Disease is the stealer of lives" especially when hit young. It is not about feeling pity for MJF when you see him on TV, it could be you. It is not about looking like the old man in the drawing that often goes along with "Essay on the Shaking Palsy"; sure we are trapped inside our own bodies and that sucks, but beyond that there is the psychological weight of no longer having any clarity; having control over one's health is an illusion, you learn that right away. We know what can happen, but no prognosis can be made, so you live in a state of "what if" and you quickly learn that your doctor knows very little but may misinform you out of arrogance, but more likely will do so out of ignorance, and a wish to allay your your fears.

By the time you are diagnosed, it will be too late to secure any sort of extended insurance, so you live fearing how you will be able to afford disability. You will be told stress exacerbates your symptoms, yet the very essence of the disease is itself stress.

Do no expect everyone who knows to respond with compassion. Others may see it as sign of weakness or defectiveness and will act upon that. Know that you will along with being trapped, lose your ability to communicate

Go to bed knowing that you will likely be as you were the day before, but know that the change of one season may find you crawling to your child who wakes crying in the middle of the night. By the way, there is no such thing as a milder form; so do not cling to any false hope.

[paula_w]

i heard on a religious radio station today as i drove to first a physical fasting and later on the way to have two teeth pulled by the best oral sugeon in town and even he had a hard time....that anger,at the right things...is a good thing. of course he used Jesus as the role model and this man did not go through life without anger.

So what is the right thing to be angry about here? We don't know. We don't know from where, how or what we got like this. Every day we speculate and withholding information is wrong. There should be doctors here....we would welcome them just for taking a little time when there is something to add that you know about or if we are on the wrong track.

There's no turning back. we are keeping up and tho we can't read those research reports we know they don't mean much a lot of the time. Numbers simply do not tell the story.

I think we all go a little crazy and lose our inhibitions and being led by something always from the time this all began -i think since birth really -somewhere -i had marty mcfly come into my life. it made me crazy to have to give it up but i do understand that i was acting impulsively and from a "celebrity" syndrome.

Damn it was hard to give that up. but now i'm on a good track to get a global network functioning. i think we can help the most with meds and influence what we need them to research.

It's honest, needed and we are the only experts ...medications. their affects their benefits, who isn't getting them and why, all these rich people but not enough to show for it. Something has got to change.

ok climbing off my high horse. wil be taking antibiotics and painkillers for awhile so i will be grumpy. Best be prepared or skip reading me. i know my meds don't work on antibiotics.



now i am taking what i feel are the best medicines and am under control, altho i will always enjoy writing about what is happening here. it is the best i can make of a worldwide tragedy [or one of them].

i don't want global government because there are too many idealogical conflicts. but a global pd community and other illnesses too, can help us all. some are very repressed out there and some are more advanced. we need to communicate.

it's the next big move...a global community and we've beeen working on it for a couple of years. Don't look for any credit . we're all in this together to quote Tom Isaacs of the UK.

So another thing you can communicate with lay people is the urgency of solving as much as we can about illnesses before it goes dark. not everywhere, but there will be communication breakdown.

i am feeling like laura, sitting here with two difficult teeth removed, bleeding , stitches in both and not feeling too positive.

but i came here to vent and i thank you all for being here.

[lindylanka]

That many of us get this young, and wonder for so long why a little bit more of our 'self' is getting stolen year on year.

That sometimes it can take what seems forever to get a diagnosis, maybe 7 or 8 years even ...

That we know that every new year another bit will have gone, and every summer we have to deal with a new less able self.

That is is hard to watch a fast fast fast world when you are getting slow slow slow.

That the medication holds it back a while and gives us side-effects that no-one tells us we will have.

That the things we really do need to know do not get raised, so we are not equipped to understand early how we can hold back this tide of loss.

That if we step into the PD community bravely there are some amazing and special people who have been filling in these knowledge gaps for us all, and will help us understand why we are the way we are...

That despite their own losses, this community gives back in a way that is truly exceptional.

That there are people who have been promised a cure in five years for 20 years or more, and time is running out for them.

That there is a real urgency for better treatments, and hopefully a cure.

That spending half our lives with a thief is not exactly what we had planned for ourselves.......

[EmptyNest68]

That those of us with PD don't decline invitations because we aren't interested but because our energy has already been used up for work or exercise or everyday homelife.
That I come home, do a couple of chores if body permits, then must sit down because frankly, my body refuses to do anything else for the day. If something MUST be done, please have patience, as it will take me a LONG time.
That if you see me wielding a knife or other utensil, or drop a glass, or pan, or something, it's not because I am clumsy or moving too fast. Please bear with me.
I know my physical appearance belie my actual health and I hope you are never in my shoes.

[toadie]

it would be nice if people had a general idea of some of the symptoms of pd, that the meds can treat the symptoms, but, don't halt or affect the progression.

the meds don't work the same for everyone, no one has the exact same issues with the disease and meds.

there is pain with pd (physical, emotional, spiritual, financial, relationship, ect)

you don't fail the treatment, sometimes the treatment fails you.

as the disease progresses, i've had problems with foods high in protein change how the meds work, different combinations of meds have caused different foods to essentially cancel the effacy of the meds, so they are not working at all.

for example, i may have a really great "on" day, mow a small area of the yard on the riding mower today, or the whole yard. i'm struggling the next few hours and i happy to get to the bathroom on time. i don't mind washing clothes, it's the putting stuff away. but, i so dislike mopping.

a neighbor sees me mow and thinks; i have an illness and take medication, that all there is to it, right? i must be ok.

at any rate, i'm not lazy or passive, i do not "fake", act, or "play up" symptoms to get out of doing things, seek attention, gain sympathy or favor.

i do not choose to be bored, i do not choose to depend on other people to drive me to and fro, help me with basic needs, functions, eating, dressing, bathing, groceries, bills, doctor appointments and such.

i try to be as self-sufficient as possible, ok, i'm a reformed control freak, mayhap, more than a bit stubborn. it's taken me years to ask for and receive help gracefully. there's a fine line between needing some help and feeling smothered.

some days i'm very lucid, sometimes i sound like "the rainman" or have the attention span of a flea and it takes me hours to type out a reply or post, several cups of coffee, trips to the bathroom, and ohhhh look something shiney....

my voice fades to a whisper, i don't like repeating myself, so i don't talk much these days, at least in person. (lol) sometimes, i just hope i wiggle and grunt in the appropriate places.

i've even taught my 4 dogs to do things using hand signals. (which turned out to be a good thing because one of them was born deaf.)

i try to keep a sense of humor about it all.

i get a nasty combination of dystonia and dyskensia if i eat chicken or mushrooms, so i say something like "if i was in the bath tub, you could throw in a load clothes (comforters, rugs, drapes) with me and i'd get them washed at the same time"

i babble sometimes, so if you find a way to condense and convey some of this in a better or more efficient way, that would be cool.

hope it helps.