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====================== Sept.21, 1997 10:30am Sunday morning Dear Listmembers, The following is shared with you, following janet's suggestion Stay happy! Maryhelen [log in to unmask] Phoenix Arizona 45 (in 2 days!) / 7.75 copy: sillysibling-janet ============ Subj: Re: my brain and epilepsy Date: 97-09-21 04:36:18 EDT From: MhDavila To: [log in to unmask] Dear Janet I'm glad you post info relating to Epilepsy, and the like. Thank you. The Mayo Clinic of Scottsdale Arizona has special equipment that can determine whether one's 'shaking' is is true-blue PD tremor, or something else like 'myoclonus'. Neuros there had me take such a test, and based on their findings they are of the opinion that my PD "tremor" may not actually be a "tremor", but is actually "myoclonus". My understanding of what I was told, is that 'myoclonus' is actually shaking caused by zillions of teensie Epilepsy - type seizures. The Epilepsy Foundation is a VERY HELPFUL & WELL INFORMED AGENCY. It has been a while now, but they promptly satisfied my need for information, disclosing information on many Epileptic/myoclonus related conditions. You might have questions that they can help answer for you I understood Dr.Katrina Gwinn, Neurologist of the Mayo Clinic in Scotsdale Arizona, as concerned with the likelihood that what is commonly called young-onset PD, upon a closer look, may not have all the same symptoms/characteristics and/or treatment/care needs as elder-onset PWP. So far it's a rough theory, but if you feel that your 'shaking' may differ significantly from the PD - tremor that seems evident with the majority, elder-onset of PD, please contact Dr. Katrina Gwinn at the Mayo Clinic of Scottsdale Arizona If enough PWP Are identified with this particular characteristic, a special study.might be initiated. Just imagine.If a particular characteristic like this one were tied specificly to a group of PWP Such as young onset PWP, then research, care, etc. could be tailored to the special needs of that group, rather than continue the current practice of lumping everyone together with the same meds, same doses, and same expectations. Then have to repeatedly, over damaging years, try to make the left shoe fit the right foot! Whether it be epilepsy or any other movement related disorder that affects the Central Nervous Sytem "We're still - all in it together":. Janet, I don't know how you manage to do so much and then share so much with us, but I - and so many more, are grateful to you!! Maryhelen ============ Subj: Re: my brain and epilepsy Date: 97-09-21 07:46:34 EDT From: [log in to unmask] (janet paterson) To: [log in to unmask] (maryhelen davila) At the ungawdly hour of 05:11 am aolian time, which on my globe translates into 03:11 am desert time maryhelen, or sumwun posing as same, wrote: all sorts of nice stuff!!! thank you for your kind words! i have a fair bit of 'time' on my hands at the moment but even if i didn't sometimes i feel 'compelled' to write what i do and who am i to argue with compulsions?? i have a small request: howzabout you [or i] repost your message to the big list? i think this is the kind of info that we all want to share! wow! i think we know more as a group about pd and its tricks than any other being/entity in the woild! whaddya say? your sillysibling janet ============ Dear sillysibling - janet Done! Finally got a couple hours sleep late this morning (same ole, same ole... ), so I gotta go make my special PD style pancakes (my very special secret recipe known only to our very special LIST members and dear friends - Ernie & Julia). What a wonderful world... Maryhelen =============