 |
 |
Dear Diana, I am now 67 years old and was diagnosed with P about 8 yrs ago. I was prescribed just Requip at that time and slowly increased the dose from 1 mg to 2 to 3 to 4 and have had to increased the dose from twice a day to 5 times today. About 5 yrs ago the doctor added Sinemet but before long I read about Comtan which comes in a combination form with Sinemet and is called Stalevo and I am now taking it 5 times a day as well. Stalevo made it possible for me to write normally again, no more micrographia. For this I am thankful. I have some off times some days and my doctor has asked me to try Amantadine 100 mg but it made no difference so I stayed with just Requip 4 mg, Stalevo 100 and the doctor added a 1/2 pill of longacting carbidopa/levodopa 50/200 5 times a day. I have been on the same dosages for almost 3 years now. My P- disease showed up subtly at first - I had trouble writing (I was working as a critical care nurse and documentation is so important). I had trouble brushing my teeth. My right arm was not swinging freely. I felt a little stiff at times and could not go jogging any more, and I took forever to swim across the pool at the gym. To get used to the medication I went to the Cook Islands on vacation with a friend and there I began with the gradual increases commonly prescribed to ease the effect on the body until you are up to 1 mg twice a day. The difference that little pill made was remarkable. I went snorkeling every day and we traversed a couple of islands on bicycles, walked a lot, enjoyed. I wrote postcards to friends...I went back to work and chose not to tell anyone of my diagnosis. Later that year I was hospitalized with a problem that I evidently was born with - a foramen in the heart that apparently did not close the way it should when you are born. An atrioseptal repair had to be done and it had to be done with an open heart surgery so they could close that hole which they called a gaping hole - which by then had caused a reversal or shunting of the blood flow in the heart causing a critically low oxygen contents in the blood that the heart sent to my brain and body (48% vs the 99-100 that should have come through), I imagine the reversal of flow had occurred from time to time as I recalled severe headaches over several years whenever I spent time at high altitudes. I had traveled to India for instance and spent considerable time high up in the Himalayas. So my substantia negra cells probably suffered a decline over time until I finally I realized I must have some cardiac problem, feeling palpitations and sudden hypertension. I went to see a doctor for an echocardiogram (which he did to humor me, not because he thought there was anything wrong with me, I looked too healthy to him!!) I insisted and much to his surprise, there it was, an atrioseptal defect! In retrospect I probably had lost enough of those precious dopamine cells to develop Parkinsons over time. As you probably know by now, there are many factors that hasten loss of those cells, toxins being all around us these days. Who knows why you are losing yours. But medication will help, why are you not taking them? True, I was not happy about taking medications - never took any pills until I was 60 yrs old and was started on a couple of heart medications to prevent atrial fibrillation because of the patch that irritated my heart's natural pacemaker, and then the Requip to stave off some of the symptoms of P. Anyway, I went back to work after three months and managed fairly well for a couple of years - until another snag sent me into retirement - I contracted mycobacterium avium complex which is a lung afflliction that is hard to get rid of, could be hospital or community acquired. I went to a lung hospital in Denver to seek treatment because no one knew what to do with it here in So. California. I took medications for 18 months to be sure it was gone. By then my activity level was not great and I determined to change that. My first P doctor told me not to join any Parkinsons support groups - they will surely depress the hell out of you, he said. But when I finally went to one I realized how lucky I was. I could still drive, I could still manage my household and all the activities of daily living and vowed to do this as long as I could. Yes, I realized that I could not return to work in a critical care area as stress seems to make symptoms worse but I could make my fight with Parkinsons my job besides becoming a full time housekeeper, gardener, accountant, cook,baker....for me and my partner, who has never made me feel less of a person for having Parkinsons. I corresponded with other Parkinsonians -met John Ball whose disease had plagued him for over 20 some years but who ran 14 marathons during those years to keep the disease at bay. Exercise, it seems, is not just a stress reducer, producing endorphins in the brain to give that feel-good sense, it helps us keep our muscles toned, helps us retain balance and movement and definitely gives a sense of achievement to the ones that keep it up. John wrote a book, Living Well, Running Hard that inspired me to get back on my bicycle and add activities that build muscle (yes, even Parkinsonians can build muscle even as it is a muscle wasting disease) - I participate in the Long Beach and LA bicycle marathons, riding at least every other day to keep in shape, sometimes just a few miles, sometimes long distances. I get on the bike even on days when my legs feel like they don't even want to get out of bed, and it is easier to ride than to walk. I see a movement specialist doctor who listens to me and is willing to allow me to experiment with my medications so that when I feel the stiffness come on early and even when it is not time to take the drug, I do and then it usually gets me through the rough spots and I am able to take the next dose a little later instead. I travel, and since all of my family live in Europe except my kids who live here - I go to Europe at least once a year. I just have to get up in those crowded planes and walk around a lot and wish I were wealthy so I could walk around with a little more space in first class!! The cramps are my main problem - especially mornings they are there just as faithfully as daylight comes. I am almost afraid of breaking bones in my feet as I try to 'walk out the cramps' on feet that twist every which way. But then they are gone, just as suddenly as they came and I get to morning chores, breakfast, cleaning up, moving lawns, chopping wood for the fireplace, gardening, a morning bike ride, meeting or corresponding with friends, taking the dog to the dogpark for socialization/exercise Without the drugs, I realize I could not live fully. I was hospitalized for 12 days for a twisted small intestine this past summer, and could take nothing by mouth, so I was without any P-meds as well, because there is no intravenous drugs for P yet. The cramps were relentless, the walking around the nursing station was an enormous effort. Again, I could not write, brushing my teeth was a chore, and ,just shifting my body positions in bed became very difficult. Back on the medications, I am back to where I was again. So, yes, even as the drug companies are most certainly to blame for the slow progress in finding a cure for the P, because they make so much money on controlling symptoms with all these medications, so why should they help finance research with their profits?? ( Requip costs over $400 dollars a month without insurance!). So imagine the drug companies' losses if a cure was suddenly found for the P today!! I hope for a cure. But in the meantime, why should I not try to live as full and active a life as the medications allow me? So take the drugs and feel the difference! Some days you will feel so normal that you think you no longer have the P. Other days the medications don't seem to do a thing for you or you get that 'between doses' low where you don't seem to be able to even move your feet. It may take an hour before they kick in, especially if you take your dose late. But thank God for the good days and accept the bad ones, just keep moving and get in touch with other Parkinsonians to keep a perspective on your situation. It may seem bad, but it could be worse. I get back to John Ball who has awful tremors and dyskenisea and bad cramping at times, but he keeps going and even heads a Team Parkinsons organization with his wife. I do not have the tremors and shaking, and I count my blessings every day I don't feel the effects of the disease, I have not suffered the loss of balance a lot of people tell me about, nor the total inability to put one foot in front of the other (freezing). I imagine all of these things may eventually happen to me, but I am 8 years into the diagnosis and today, for now, I am not losing sleep, nor will I allow depression to creep over me like a wet fog, attempting to rob me of my tomorrows. I live today, I make plans for the future, and as I read your questions I felt compelled to answer you because there is more to life than Parkinsons disease. Sincerely, Monika ************************************** See what's new at http://www.aol.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn