Clinical Trials Continued
After these preliminaries you are into the trial, the drug is dispensed with instructions about how and when to take it. Most trials require diary-keeping, and have a schedule of appointments when you are monitored. In the past two years I have participated in three clinical trials, all with their own quirks. I'm still waiting for a patient evaluation form that allows me to comment on one study. In another the medicine was packaged with no regard to the fine motor skills of the participants. (I couldn't get the pills out of the blister pack!~. In a third the company said that the pilL which was dissolved sublingually, tasted like chocolate. If that's what chocolate tastes like, Hershey would have been out of business long ago!
Over the course of the clinical trial you become acquainted with the staff at the Center, and get a real feel for the intricacies of the endeavor. The staff must travel to discuss the research and the trials, learn how to administer the triaL keep volumes of paperwork, make arrangements for appointments, give tests, and ask time after time "How are you feeling compared to two weeks ago?" It is a wonder that they manage to keep their good nature through it alL
Choosing to participate in a clinical trial is not for everyone. There are risks involved, and benefits. The whole subject is covered thoroughly on the National Institutes of Health web site http://clinicalstudies.info.nih.gov or you can call 800-41 1-1222.
MOVERS AND SHAKERS OF NEW ENGLAND is a support group for young onset people with parkinson's and their caregivers that covers the whole of New England. They meet the first Saturday of each month (except for July and August} from :t)0 PM to S:00 PM at the UMASS Medical School in Worcester, MA., Room S1-123. The current monthly meeting notice can l~e found on the computer at http:/Members.xoom.com/msneweb/msne. Rick and Melissa Doppler are the co-founders of the group, and they are available for phone support calls with either patients or caregivers who may be having trouble coping, and will also give you directions to the meeting. Their telephone number at home and for the group is 978-929-9295.
Pill Poppin' Blues. By Gunilla Norris
Each morning my partner and I take a pile of pills. He is a PWP and I have a tricky digestive system Between us it seems we consume a pharmacy worth. No fun! One morning as I was seeking quiet and introspection this little blues song popped up. I tried to make it go away but it kept up its little riffs. Here is the Pill Poppin' Blues.
For your ills, take your pills
In Pity do not wallow, just swallow, swallow, swallow.
Delay is no use, it's just abuse.
you silly billy
you have to take them willy nilly.
Pop them in now One, two three.
Soon you'll forget this and be free.
If this process you with horror fills,
just squint and bear it.Take your pills!
Glug and glug, the water pour.
Open wide and swallow more.
it kills. Just take your pills !!!!
We have a new name but are really a continuation of what was, from 1994- l996, Connecticut Young Parkinsonians. The word "Young" was wrong since we were a group comprising all ages; our defining trait was that we all wanted to work to help each other, to help the PD research community get funding, to help doctors develop new treatments and to address issues that local support groups often don't such as the problems of young onset PWP and caregivers CG(or carepartners). Hence the new name. Our goals are the same.