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Automatic digest processor wrote: > > There are 6 messages totalling 266 lines in this issue. > > Topics of the day: > > 1. Update-collagen injections & PD Day Happenings > 2. Fw: Need advice re foot cramps & PD (2) > 3. Thanks everyone > 4. Action Update from the Parkinson's Action Network > 5. Nurse returning telephone calls > > ---------------------------------------------------------------------- > > Date: Sat, 20 Mar 1999 12:15:42 -0600 > From: Stan or Joan Snyder <[log in to unmask]> > Subject: Update-collagen injections & PD Day Happenings > > Hello to all- things around here have been happening to fast & furiously > that I can hardly take a breath. First-the collagen injections: > Yesterday at 7am, I arrived at Peoria Day Surgery Center. to have skin > cells harvested to grow my own collagen. While it was no walk in the > park-it was certainly easier than giving birth to a 10 lb boy! Dr. > Michael Vidas is certainly a skillful and caring man-but he stopped > short of granting my wish to have liposuction while he was cutting! I > had to settle for a "tummy tuck," as he harvested alot of skin to grow > lots of collagen (he believes in the more is better philosophy!) and > today I'm just a bit sore-w/24 staples in my tummy. This morning at 8:30 > am, I met Dr. Vidas, Gina Morris (my tv buddy & her cameraman at Dr. > Vidas' office. There she filmed alot of tape of me, my husband & the > dr., got alot of questions asked and answered, and filmed them as they > put a fiber-optic camera up my nose & down the back of my throat and > they also filmed the video tape of my vocal chords behaving as they > shouldn't. She got the dr.'s permission to come into the operating room > w/ her cameraman to film the actual injections in 2-3 weeks. To her > credit & that of her cameraman, neither of them got sick & both were > fascinated by the process! I'd like to thank Margaret Tuchman for her > list response to Rosemary-I printed it out and and gave it to Gina > Morris so that she can have facts to go along w/ her stories. > Now, to our plans for PD awareness day-Thanks once again to Margaret > Tuchman & the Tuchman Foundation for PD research, we have been > collecting moneys to underwrite our Art Exhibit. We are getting such a > great response that I am revising my original budget & we are going to > offer more to make this a real draw for Chillicothe & the surrounding > areas; more of an EVENT! i received a phone call yesterday from Preston > Jackson, an internationally known artists and jazz guitarist that he is > available & happy to play music for our event. Just having his name on > our advertisements will draw a large part of our target crowd.We are > delighted to offer jazz because Claude Scott-the man & teacher whose > battle w/ PD are the subject of this exhibit, loved jazz. One of my > girlfriends in Peoria is a very skilled caterer and she has offered to > cater the event w/ dips, veggies, cheeses, and finger sandwiches, for a > nominal fee which I will be able to decide better after seeing the > publicity as it goes out in the two weeks prior to the event. Tom Kelly > & his wife are making up T-shirts that say "There's nothing wrong with > me (my husband, my wife, my mom, my daughter etc.) that a cure for PD > won't fix!" These will be available to be ordered. Another girlfriend is > painting whites sweatshirts w/ a pink tulip on navy blue varsity letters > that say PD. Yet another project is making navy blue ribbons looped like > the aids red ribbon, yet tied with a silver bow to symbolize the older > PWP & early onsetters united in our battle against this disease. As for > publicity, the local newspaper will be doing two stories about the event > plus run ads. The mayor will make a proclimation-Official PD Awareness > Day at the next city council meeting so that will make all the area > newspapers. the Peoria Paper will be doing a story on their things to Go > & Do page. Tom Kelly, Jane Scott & I will be interviewed in the studio > of Gina's TV station on the Saturday before the show. This is what we > have for now; I will send further updates as events warrant! Thanks for > your continuing prayers for our success! > > -- > Joan E. Snyder (47-8-10) <[log in to unmask]> > "In the depths of winter I finally learned there > was in me an invincible summer" Albert Camus > http://www.newcountry.nu/pd/members/snyder/page1.htm > > ------------------------------ > > Date: Sat, 20 Mar 1999 17:45:24 -0500 > From: Kathy Greene <[log in to unmask]> > Subject: Fw: Need advice re foot cramps & PD > > Subject: Need advice re foot cramps & PD > > > My mother (86/11) just moved in with me after 5 yr. of 'assisted living' > > Foot cramps have been a major problem the last few yr.. Old neuro. said > > were part of PD and treated symptomatically w/ moderate success. New > > neuro.said they are rarely part of PD and thinks spinal stenosis causing > > them and gave her VERY low dose of Neurontin. The next day she couldn't > > walk and now 3 days later knees still give out. I D/C'd the neurontin > > because of what seemed like obvious cause and effect, against Drs.wishes. > > He said that Neurontin does not cause this side-effect, but I looked at > PDR > > and found "ataxia" as a side effect in 12% of cases. I'm confused, I > > thought I had read that foot cramps, mainly at night and early am, were > seen > > in PD. If that is so what is with this new (very young) neuro. who says > he > > specializes in movement disorders. Any advice or hints would be so > > appreciated as I try to work my way through this. Mom is also on: > Sinemet > > 25/100 4x, > > Tasmar 100/ 2x, Vasotec2.5, atrovent inhaler, Ibuprofen 200mg/4x, > synthroid > > 0.075 and remeron 15mg. The new neuro D/C'd parlodal. I just am trying > to > > figure out if this new Doc. is okay to continue with and the foot cramps > > thing confused me. Also, that a nurse always returns calls, never the > Doc. > > himself. Am I expecting too much? Thanks for any words of wisdom as I > work > > my way through this transition. > > > > ------------------------------ > > Date: Sat, 20 Mar 1999 19:10:17 EST > From: Karen Hanson <[log in to unmask]> > Subject: Thanks everyone > > Hello folks! > > I just wanted to say thank you before I signed off of the Parkinson's list. > The mails are getting too much for me to handle right now, but I did want to > let you all know that it has been a privilege to read your emails. Through > you I have learned about the affects of Parkinson's Disease and hopefully I > have gained in empathy for what my 67 year old father is learning to deal > with. I wish you all the best, and I am praying for a cure for all those who > suffer from this disease. > > Take good care, > > -Karen > > ------------------------------ > > Date: Sat, 20 Mar 1999 17:13:10 -0700 > From: Murray Charters <[log in to unmask]> > Subject: Re: Fw: Need advice re foot cramps & PD > > Hi Kathy, > you wrote.............. > > > Subject: Need advice re foot cramps & PD > SNIP > > Foot cramps have been a major problem the last few yr.. Old neuro. said > > were part of PD and treated symptomatically w/ moderate success. New > > neuro.said they are rarely part of PD and thinks spinal stenosis causing > > them and gave her VERY low dose of Neurontin. The next day she couldn't > > walk and now 3 days later knees still give out. I D/C'd the neurontin > > because of what seemed like obvious cause and effect, against Drs.wishes. > > He said that Neurontin does not cause this side-effect, but I looked at > > PDR and found "ataxia" as a side effect in 12% of cases. I'm confused, I > > thought I had read that foot cramps, mainly at night and early am, were seen > > in PD. If that is so what is with this new (very young) neuro. who says he > > specializes in movement disorders. Any advice or hints would be so > > appreciated as I try to work my way through this. > > Kathy, I belong to the Early Onset Support Group here and 25% of the > members experience foot cramps as a painful part of their PD. The > foot cramps are on their PD side and seem to occur at the "end of > dose" or "off" time. This is normally most evident first thing in > the morning as medications have not had time to kick in. If I > forget to take my meds on time the foot cramp reminds me in a > hurry. I'm 54 years old and most of our group are around my age > or younger. Stretching helps alleviate this symptom. > > > I just am trying to figure out if this new Doc. is okay to continue with > > and the foot cramps thing confused me. Also, that a nurse always returns > > calls, never the Doc. himself. Am I expecting too much? Thanks for any > > words of wisdom as I work my way through this transition. > > Kathy, we are all individuals with varying degrees of Parkinson's and > as this neuro is so young he may have not seen others with foot > cramps as part of their PD. > > My opinion on Drs. is that if you aren't totally comfortable and not > feeling the necessary trust you should definitely seek a second > opinion. I didn't care for my first neuro's attitude and switched. > I don't regret it and would do the same thing in a heartbeat were the > situation repeated. PD is long term and you need that comfort level > so you can "partner" up with your medical team and devise a plan for > managing every aspect of your PD in the most effective way possible. > > I don't have any medical background, I am a mechanic with PD. That > said I also have a strong opinion that says be extremely vigilant for > any sign of drug related side effects or negative reaction especially > when there are multiple drugs involved. I personally believe the > least amount of drugs that we require to maintain a basic normalacy > is the best. > > I wish you and your mother all the very best............Murray > [log in to unmask] > > ------------------------------ > > Date: Sat, 20 Mar 1999 21:21:06 EST > From: [log in to unmask] > Subject: Re: Action Update from the Parkinson's Action Network > > This is a multi-part message in MIME format. > > --part0_921982867_boundary > Content-ID: <[log in to unmask]> > Content-type: text/plain; charset=US-ASCII > > Thank you Helen, for contacting your representatives. > > In New Jersey several of us have visited Congressman Rush Holt(D-12- NJ) and > he was very interested in helping our cause. He was also particulary > interested in the Congressional Working Group and I have forwarded the PAN > message to his Health Care Aid, Sarah Stecker. > > Often if the Congressional member is just made aware of the need for > Parkinson's help they will respond. It's worth a phone call, letter or trip > to meet with them in their office to ask. > > Barbara Schirloff > > --part0_921982867_boundary > Content-ID: <[log in to unmask]> > Content-type: message/rfc822 > Content-transfer-encoding: 7bit > Content-disposition: inline > > From: [log in to unmask] > Return-path: <[log in to unmask]> > To: [log in to unmask] > Subject: Re: Action Update from the Parkinson's Action Network > Date: Sat, 20 Mar 1999 11:19:56 EST > Mime-Version: 1.0 > Content-type: text/plain; charset=US-ASCII > Content-transfer-encoding: 7bit > > Am delighted to hear from PAN. Thank you for doing so much. Will get notes off > to David Wu and the rest ot the OR reps Look forward to more info on Forum. > > Helen Mason > > --part0_921982867_boundary-- > > ------------------------------ > > Date: Sat, 20 Mar 1999 22:55:34 -0330 > From: Anne Rutherford <[log in to unmask]> > Subject: Nurse returning telephone calls > > Hi Kathy,The short answer-It depends....1)on the qualifications of the > nurse and 2) the reason why > In the UK there are specially trained nurses who manage multi-disciplinary > Parkinson clinics. In canada there are some Movement disorder Clinics > with a highly qualified nurse who counsels and educates PWP and family. > Our nurse works with the neuro as a member ofthe team. Before you leave > she makes sure you understand what you are to do. You can call her any > time, she says there are no dumb questions. the neuro may be tteaching > or in a clinic. > hope this helps > > anne rutherford > > ------------------------------ > > End of PARKINSN Digest - 20 Mar 1999 (#1999-127) > ************************************************ Dear Kathy, Sorry I must have missed the original enquiry about a nurse returning phone calls.Our neurologist does have a full time qualified nurse who takes care of all the patients participating in research study from our area in CT. obviously has been under some kind of training especially for PWP.s The St. Raphaels Hospital affiliated with Yale in New Haven Ct. has a referral and information center for PWP.s that is also managed by a fully qualified RN who is an excellent speaker for support groups and can answer most questions you have on PD.Was there a question as to the ability or the qualifications of these nurses. Sorry f I missed the point . love hope faith for a cure...... Margaret Clark59/11