 |
 |
Hey Karen... Ya gotta watch out for our two "resident Maineiacs," cause the next thing ya know you'll be recruited as a member of the "Ivan's Video Packing and Shipping Company!" <grin> You'll end up preparing mailings of Ivan's excellent PD-related video for shipment alllllllllll over the world as more and more orders pour in. THEN there's the "Maineiac's for Ivan's Oscar Committee." As a woman, you'll like THAT 'cause unlike the Packing and Shipping Company, " ya get to buy new outfit to wear to the Oscars if Ivan wins! NEAT!! One last thing with these two fellas, Karen - You might find yourself doing all the work and THEY'LL do all the supervising! <DUCKING FAST> So stand firm of your rights! Remember - even in MAINE women have been liberated. Seriously, Karen.. Ivan 'n Greg are two super persons, and I know they'll both aid you in any way they can in your mutual battle against the disease, as will the rest of our PD List-family. Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of Gregory E. Leeman Sent: Thursday, February 19, 1998 2:42 AM To: Multiple recipients of list PARKINSN Subject: Re: Introduction from Maine Hi Karen, Welcome from a fellow Maineiac. As Ivan said we are very pleased to ha= ve another young member to identify with. Hopefully we will meet sometime= and compare war stories. If there is anything I can help you with please d= on't hesitate to ask. Regards, Greg Leeman 37/6 [log in to unmask] -----Original Message----- From: Karen Bardo <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask] > Date: Wednesday, February 18, 1998 8:02 PM Subject: Introduction from Maine >February 18, 1998 > >Hi Everyone - > >I joined the Parkinson Information Exchange on December 29th. Reading >all of your messages everyday has been very helpful both information a= nd >coping wise. > >My name is Karen Bardo. I am 44 years old and was diagnosed with >Parkinson=92s Disease when I was 42 years and 10 months old. I live i= n >Alna, Maine with my husband, Jon, and our Maine Coon cats, Sam and Jak= e, >(adopted from the local animal shelter). I have worked for the >Wiscasset, Maine School Department for 15 years as the administrative >secretary for the Special Services Department. > >Do any of you live in Lincoln County, Maine or do you know anyone who >has PD who does? Also, do any of you have specific information >regarding the support groups in Brunswick and Portland? Is there a >support group in Portland specifically for younger people with PD? > >>From August of 1988 to August of 1995 I was experiencing extreme stre= ss >because of my job and blamed many of my physical problems on this. In >April of 1996 I started looking for answers and was diagnosed with >Parkinson=92s Disease on July 3, 1996. First I went to a foot doctor = who >sent me to a physiatrist who said there was nothing wrong with me. Th= en >I went to my family physician who sent me to a neurologist who diagnos= ed >me. > >In August of 1995 my left shoulder froze. Other symptoms were twitchi= ng >and curling toes on my left foot, eating and brushing my teeth two >handed, small handwriting, jump starting my left hand with my right ha= nd >in order to write, my left arm would twitch when typing, and it would >shake when answering the telephone at work. I am left handed and all = of >my problems have been pretty much on the left side. In hindsight, I >think I was having symptoms of PD starting in 1991 if not before. > >I feel very lucky to have found out what was wrong with me so quickly. >For me it was a relief to know what was wrong. So far I have not been >in denial, experienced anger, or spent too much time questioning why m= e >but once in a while I experience gripping fear around what this diseas= e >may take away from me. Right from the start I have been very open wit= h >family, friends, and coworkers about having PD. I have a lot of peopl= e >in my life who care about me and whom are rooting for me. Everyone ha= s >their fingers crossed and are hoping for a cure. It amazes me how man= y >people have told me stories (most of them positive) about family membe= rs >who have PD. > >One of the factors that helps me deal with having PD is the dynamic >duo. These two people are an inspiration to anyone. One of them is m= y >husband=92s sister. She has cerebral palsy and walks with crutches. = Her >husband has a from of muscular dystrophy and uses a wheelchair. These >two people lead very full lives despite their physical challenges. Th= ey >both work full time (they get up at 4:00 a.m. in order to get to work = on >time) and have a very busy social life. > >Right now my biggest problems are internal tremors and problems with m= y >left foot. > >I have felt the internal tremors (aching, tingling, burning sensations= ) >everywhere from the top of my head to the bottom of my feet. They mak= e >me feel like I am in the middle of an earthquake. I have gotten very >used to these tremors and they are really not a problem except sometim= es >they make me tired. > >The problems with my left foot include gripping and curling toes, hot >sensations, strong internal tremors, prickly feelings like my foot fel= l >asleep and is trying to waking up, big toe folded over my other toes, >muscle spasms, toes feel like they are going to break off, and pains i= n >toes and foot. I have a lot of trouble keeping my left leg and foot >still, my left foot turns in and out, and I tend to be on my toes >whether sitting or standing. I cope with these problems by taking my >shoes off, tapping my foot, standing on my toes, doing foot circles, >sitting on it, and pressing foot against windshield of the car (only a= s >a passenger not a driver). My entire left leg is sore at times >especially my left ankle. My right foot keeps trying to join in the fu= n >but so far what it is doing is minor compared to the left foot. > >I treat myself very well and do a lot of good things for myself. I am >always looking for new activities that might help me deal with this >disease. I walk, stretch, and use hand weights on a regular basis. I >am taking tap dancing lessons and just finished a T=92ai Chi class. S= ome >of my interests include cross country skiing, camping (by backpack, >canoe, and car), gardening, hiking, boating, sewing, bicycling, playin= g >the flute and I love animals. I receive lots of purr therapy from two >very cooperative cats. > >I have found someone who is learning Shiatsu and we are going to start >working together in another week. I am hoping this will help some of >the stiffness in my upper back and shoulders and maybe help my left fo= ot >and leg. The physical therapist who helped me unfreeze my left should= er >used pressure points which were very helpful. Therefore, I am very >hopeful that Shiatsu will be very beneficial for me. > >In another week, I will be taking an adult education course in Wiscass= et >called Better Health - Naturally. We will be exploring alternative >health modalities such as laughter (my favorite thing to do), massage, >Shiatsu, polarity, Reiki, reflexology, hypnotherapy, naturopathy, >osteopathy, herbology, aromatherapy, etc.. This should be really >interesting and I am looking forward to finding out if any of these ca= n >be helpful for a person with PD. > >Since finding out that I have PD, I have learned to pace myself. I >often run out of energy. However, so far it has not stopped my from >doing anything I want to. I believe in the use it or lose it >philosophy. I pretty much am taking things on a day to day basis and = do >not worry too much about tomorrow (except when planning my gardens and >camping trips). > >Sinemet makes me very sick. It makes me nauseous, gives me a horrible >headache, the sweats, and I want to curl up somewhere and sleep. I ke= ep >reading to eat crackers to help with the nausea but this does not work >for me. Right now I am taking it with ginger ale and gingersnaps and >most of the time this keeps me from getting sick. I have found that t= he >combination of sinemet with caffeine or bananas makes me sick. I woul= d >appreciate any suggestions regarding this problem. I know the Sinemet >would be more beneficial if I could take it on an empty stomach but th= is >does not seem possible for me. > >Originally I was taking Sinemet CR and had strange spells every so oft= en >(usually once a month). One spell which happened at work caused me to >be taken by ambulance to the hospital. The school nurse told me I mig= ht >be having a neurological breakdown. Then she said oh goody goody I lo= ve >it when I get to call the ambulance. Give me a break! Now that I hav= e >been sick so many times on Sinemet, I am suspicious Sinemet CR was >causing me to get sick maybe in combination with my menstrual cycle. > >As of today, I am taking 1 1/2 Sinemet 25/100 at 7:00 a.m., 11:30 a.m.= , >4:00 p.m., 8:30 p.m. and 1 mg. of Requip at 7:00 a.m., 11:30 a.m., 4:0= 0 >p.m.. Does this sound appropriate and reasonable? > >I am going to write to the Senators and Representatives from Maine >regarding funding the Udall bill. My father is also going to write to >them. However, he is in Florida right now and does not want to do thi= s >right now because his printer is in Maine. He won=92t be back in Main= e >until April. Will this be too late? If it is, I will encourage him t= o >e-mail or call them. > >I apologize for the length of this message. I would appreciate hearin= g >from any of you. > >Thank you for listening! > >Karen Bardo >([log in to unmask]) > >Keep Smiling and Laughing, Work Towards A Cure, and Never Ever Give Up >Hope! >