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Dear Stan You don't know me. I'm another PARKINSN LIST member who has enjoyed your posts. They've been good medicine for me, and I thank you from my heart. A while back you wrote an article which I think you had printed in a newspaper. I thought I'd properly saved it, but now I can't find it. I'm wondering if you might still have it and provide it to me with your permission for me to send it to Arizona PD Support Groups and to public mdium sources (newspapers etc.) with hope that they would make it public. That would surely help us promote public awareness of PD and encourage support of the Udall Bill. Plese send your response to my e-mail [log in to unmask] Thank you for your consideration. Like you, I was forced to leave my job and enter the world of the Retired/Disabled, and that also overwhelmed me. Although that was several years ago and I "got over it", eery once in a while I have to get over it again - but I do. So my participation and followed through with just about anything tends to go up and down. I raised my kids 3 kids from babbies to adults without a dad, without child support or any other type of assistance, attained what I wanted in a responsible job, and took pride in my self sufficient lifestyle. I finally remarried only after the poor fella (my hubby now) thoroughly understood my need to "continue being a self sufficient person". I didn't want him to be burdened with the weight of three children that weren't his, although he insisted he was marrying us as a "family". Low and behold, very soon after our mariage, I had trouble and PD moved in. Talk about overwhelmed! I soon enough learned I had to "eat my words about being self sufficient. I hit hard rather suddenly after a while of 'not so bad' symptoms. Like you, I suddenly found myself crawling. And even yet, I thought I could be brave.Overall it was hell. Sinamet and nothing else was cooperating. That was about two years ago. Now, I'm taking less Sinamet, and my off times are less severe and less often, I'm not sure why. I went through ups and downs, mostly down, but slowly but surely, I'm doing better.My friend Tom was diagnosed in his twenties and now he's in his fifties. He's "fallen in the pit" more than once, but he's much better than he was when I first met him 8 years ago (he didn't used to, but now he's driving, walking almost normally, added a new room to his family's home by himself).He's my inspiration, and my husband is my lifeline and my heart. For what it's worth, just had to share that with you. We can get better.The nightmarish period you're going through wil hopefully pass. I'm glad you're seeking out the best medical care possible. Tom and I have both participated in studies at Barrows Neurological Center, we both have been patients of two world respected Movement Disorder Specialists & PD experts. I've also participated in studies at Arizona State University and the University of Arizona. I've received care from Movement disorder specialists at Tucson's Neurological Clinic at the University of Arizona with at Scottsdale's Mayo Clinic. I've to see Neuro surgeons in California about fetal tissue transplant surgery (I was chosen for the surgery but after learning more, I declined - for now), and I've been seen at the University of California in Los Angeles UCLA medical Center. I've learned from each, and I feel I've paid my way for the education not onlyby paying the bills, but also by offerring myself as a Guinea Pig for their studies and tests. I'm sharing all this with you just as a qualifier for my advice to you. "BE CAREFUL WHEN OFFERING YOURSELF UP FOR STUDIES AND TESTS" - BY ALL MEANS, DO IT... I STILL AM, but keep in mind.. many experts, not all.. get carried away with the excitement of "making a breakthrough" or "getting the money in from the research /drug companies for their clinics", or "to get their findings published" or whatever glory... and the best interest of the patient as in an individual human being can get buried in their stack of priorities. Be sure to get copies of all test results AS THEY DO THEM. iT CAN HURT YOU NOT TO HAVE THE RESULTS AND JOURNALS AS THEY ARE RECORDED. It's amazing how defensive they can get if you need a copy of your "medical records" later. I tried and I was told they were "confidential" - even from me. I know that's a bunch of crock., but to pursue it takes too much energy. The medical board in my state is self regulated, it takes two years for the board to even see your complaint. Anyway, 'nuf said. Best wishes Maryhelen PS Good Lucck on your book "The Pope's a Little Shaky And I'm Not Doing So Great Myself (Stumbling Through Life With Parkinson's)". Sounds great!! Will keep you posted on my progress. A while back, a poem "An Open Letter to Parkinsons" was posted (copy shown below), with the author listed as Terry Ogden. I don't have Terry's e-mail address, so I'm hoping Terry reads this and responds or maybe a list member know Terry and can forward it to her. I'm seeking Terry's permission to send the poem to a couple newspapers or other public media sources (magazines radio, TV show) to request that they show it to the public here in Arizona. I believe it would be helpful to the cause (publicize the need for public awareness and support for the Udall bill). I'm sorry for not writing to you directly, Terry. I rarely get through to read all the Parkinsn List postings anymore. I awkwardly skim the author list, subject line and sometimes the first line or two of the body then try to copy things I might be able to read later. Many times I can't get to that either and just start deleting. In that process, your poem caught my eye and I finally took the time to read it. As a PD-battle-worn-Parkie, I strongly relate to it, as I'm sure most of us Parkies do. The general public may not, but I'd like to give them the try. May I have your permission to do so? Thank you for having composed such a beautiful piece and for having posted it to share with us. Maryhelen Davila [log in to unmask] Phoenix Arizona Diagnosed 8 years ago at 37 years in 1989