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Topic Parkinson's Research Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2009.12.06 01:34
I hope i don't offend anyone, but after reading the replies to my post on the testing i thought about this.

As our Great Sage Lohengrin has stated:
Teaching and understanding: We have to understand, you with Parkinson's and you, our caregivers. We have to teach. We owe it to those who will come after us, our contemporaries and to ourselves.

From all the newsletters, updates etc. that we all receive and have received, i think this area is lacking. While i understand the desperate need for a cure, i think, teaching about PD is just not there. Not the teaching of the symptoms, but the teaching of the disease to the community.
The first thing anyone has said when they find out Jim has PD.."Oh, he shakes like MJF". Uhh not really....He has very few tremors compared to most, but beside that, i honestly believe they think it is contagious or that he will die tomorrow.

The general public has very little knowledge about what our pdrs go through and how it affects the body and mind. This board is the only place i've found where i have found out the "truth" about pd.
Pamphlets and small essays help, but hands on knowledge is what has both scared me and comforted me. The knowledge we all have learned going through this horrible disease as caregivers along with the views of our patients is awesome.

Again, oh Great Sage, there is knowledge in teaching and educating the public about a disease that is "stereotyped".

Teaching the public along with our government that, PD patients can't be lumped in with the general public in testing as well as "life" issues.
Medical treatment and care are other big issues, most, if not all, have faced. Getting the right meds, even getting meds, is a big issue. While there are some programs out there, some folks just don't fit in any category and need help on these lines. Was it here i read where most PD "families" spend around 10K a year for health care? Many sell off their homes and move to smaller houses or apartments or assisted living to deal with this disease. All these facts i think are missing from the public view.
Families being distant and friends being distant only add to the complications we/they all face. The indifference or the embarassment even adds further to the "trauma" of dealing with life.

So, in closing, if anyone knows, about someone trying to do this, let me know. I would like to somehow start something here, whether it be in writings or if you know a group doing this, that i have missed,let me know. It's time to teach and i would like to be able to help.........

By LOHENGR1N On 2009.12.06 20:01
Gosh! Blush, blush, karolinakitty you silver tongued flatterer you! Great Sage? Oh my....when I read that I was almost at a loss for words...almost (hehehe). You're right We do need to get out the facts. Included in the facts should be the impact upon daily life and Family this disease imposes. I've been toying with the idea of going to some of the training schools around the area to see if they would be willing to incorporate a half hour or so into the training for students to talk to Us P.D.ers and other conditions so they might understand our actions or fears when going to a clinic or office. To get some "hands on" before they encounter something while working. Still in planning here as I have to find a ride to and from and others willing to assist.

So here I am thinking about this and getting it going when...........My P.C.A. was having trouble with wisdom teeth. She had one extracted and ran into problems so She shanghaied me Friday (I'm kind of a Father figure to Her). Sitting in the office waiting room for Her to come out. the door opened and a dental tech called a woman for Her turn as they were going into the office the Tech asked are you all ready? The woman replied NO! To which the tech said that's good, right this way! ???? Shaking my head I thought this goes way deeper than Parkinson's or other diseases. What is wrong with training and education? Talk about leaving the Human factor out........I think a refresher course or new course is needed! If asked just about everyone knows to Stop...Drop..and Roll if on fire. What ever happened to Stop....Look...and Listen when talking to People? If you're not going to pay attention and listen don't ask is the way I see it. At times it takes a lot to get my vocals up to a level to converse, don't make me waste it by not listening. But I digress.......

I guess We have to start with grassroots activism. There may be other things going on here online.....Bob is involved in some stuff. If He reads this maybe He can chime in with things He knows are going on. Meanwhile, one can always stop in the mall at the present wrapping kiosk, ask to have gifts wrapped and lean on the table shaking it and strike up some idle chat like you should see me with a cup of coffee when I tremor like know break the ice......thank them for the help saying I don't know what I'd do if not for people like you helping I'd be wearing this wrapping paper till Easter. We have to use our imaginations be creative and seize the chances to bring awareness. By so doing we can teach and illustrate the diversity of challenges faced daily. Put a face and name to Parkinson's even if in only a few and be optimistic think of the domino effect. Well I guess I've found my words huh? (wink) Remember We're all in this together and together We can make a difference! Take care, best of luck and hang in there.

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