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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 and coping wise. My name is Karen Bardo. I am 44 years old and was diagnosed with Parkinson’s Disease when I was 42 years and 10 months old. I live in Alna, Maine with my husband, Jon, and our Maine Coon cats, Sam and Jake, (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 stress 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’s 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. Then I went to my family physician who sent me to a neurologist who diagnosed me. In August of 1995 my left shoulder froze. Other symptoms were twitching and curling toes on my left foot, eating and brushing my teeth two handed, small handwriting, jump starting my left hand with my right hand 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 me but once in a while I experience gripping fear around what this disease may take away from me. Right from the start I have been very open with family, friends, and coworkers about having PD. I have a lot of people in my life who care about me and whom are rooting for me. Everyone has their fingers crossed and are hoping for a cure. It amazes me how many people have told me stories (most of them positive) about family members 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 my husband’s 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. They 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 my 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 make 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 sometimes 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 fell 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 in 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 as 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 fun 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’ai Chi class. Some of my interests include cross country skiing, camping (by backpack, canoe, and car), gardening, hiking, boating, sewing, bicycling, playing 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 foot and leg. The physical therapist who helped me unfreeze my left shoulder 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 Wiscasset 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 can 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 keep 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 the combination of sinemet with caffeine or bananas makes me sick. I would appreciate any suggestions regarding this problem. I know the Sinemet would be more beneficial if I could take it on an empty stomach but this does not seem possible for me. Originally I was taking Sinemet CR and had strange spells every so often (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 might be having a neurological breakdown. Then she said oh goody goody I love it when I get to call the ambulance. Give me a break! Now that I have 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., 4:00 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 this right now because his printer is in Maine. He won’t be back in Maine until April. Will this be too late? If it is, I will encourage him to e-mail or call them. I apologize for the length of this message. I would appreciate hearing 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!