 |
 |
Hello Friends, I would like to introduce myself. My name is Ernie Peters, I am 53, half English half Greek, wonderfully happily married for 33 years, no children and my wife and I have lived in Leeds for 21 years. My first message to the web was very short as I had not read your previous letters in the logs and did not want to bore people with details of myself or bother them with questions. I was also new to the net and it was actually my very first message out on E-mail. However, on discovering and reading peoples mail in previous logs I realised how friendly people were and how willing to help, encourage and support others. In fact my first memo may not have got through as apparently I sent it to the old address and Joe Bruman kindly let me have the new address. So, I'll try again and promise you wont get over burdened with long messages in the future because as my mother (who lives in Limassol Cyprus) will tell you, I'm terrible at settling down to write letters. However there are points about how I first started with PD that might strike a chord with others. Here is the outline. Oct 93. We returned from our holiday in Cyprus visiting my mother without a hint of a problem. At the time I worked for the Inland Revenue and I was immediately placed in post carrying extra responsibilities and a much higher workload. Many changes and restructures were afoot and life was very hectic. I enjoyed the job and the challenge but knew really there should have been more help. Mid Nov 93. Went to the doctor with a minor hand tremble on reaching out with my right hand. I didn't want to go as I thought it was through using a mouse too much but my wife made me go. Doctor did not want to hazard a diagnosis as yet but detected signs in my right leg as well and referred me to a Neurologist. Mid Dec 93. All conditions worse. Right arm being carried bent as if in a sling, balance affected on walking, writing very small and spidery. End Dec 93. Saw the Consultant. Diagnosed PD. Said I would still live another 30 years (this was good! I had only expected another 20 years without PD) Ordered more tests which confirmed diagnosis. Started Madopar CR 125 mg twice daily. Had a reasonable Christmas as was expecting a worse disease than PD. Jan 94. Still at work all conditions still worsening. Jan 24th. Went in to work to finish something important. Felt exhausted, weak. Finished work and at 2 p.m. collapsed exhausted on first aid room bed and took 2 hours till fit enough to go home. Even the following day too exhausted to move from settee and took antibiotics as doctor thought possible I had bladder infection. This did not appear to be the case but as I only have 1 kidney doctor was being careful. Feb-March 94. Still at home, alone during the day. All symptoms still getting worse could not walk very well, could not guarantee to correctly key our electronic alarm keypad. Dreaded walking down the stairs each morning expecting legs to be worse. Started looking at things like wheelchair access to the house and worrying about how my wife would cope. My employers agreed to speed through retirement with pension on health grounds. In a black despair so deep you could wade through it like black treacle. Consultant added Eldepryl 10mg once daily to prescription and changed me from madopar to sinemet CR twice daily. End March 94. My wife ( one year younger than me) asked and was agreed a special retirement package from work to look after me. Apr-Sept 94. With my wife home with me, we started going for short walks at first and slowly increasing. My mood improved all my symptoms started improving. By August able to walk about 8 miles cross country without problem and writing and hand almost completely normal. Starting to think was it really PD I had? Am I taking these tablets for nothing? All this extra time with my wife was wonderful. Oct 94 - Jan 96. Pretty good really, did almost everything without problem, really enjoying life whilst realising the future was uncertain. Found all symptoms were worsened with any emotional flare up such as an argument but even more so by a more continuous worry at the back of your mind, i.e., if my mother had a problem. Found a funny thing in that at the time of the emotional disturbance I often coped well but had a delayed reaction and paid for it about 2 or 3 days later. Jan 96. Consultant suggested I try without Eldepryl because of research findings about mortality. Switched to 5mg Eldepryl for 28 days then stopped. At first great no problem at all. Then after about 30-40 days increased "off" periods about 4-5 hours after sinemet CR. Still trying to maintain on only 2 sinemet CR twice daily though feel the need for some in the early afternoon. I am keeping an anxious eye on Eldepryl updates and monitoring my progress so as to make an informed judgment with my consultant at a later date. I hope I have not over filled your mail boxes but wondered if anyone else had an experience where stress or overwork seemed to be a contributory factor and anyone who was on Eldepryl and came off it. To me, the way people communicate and share problems from so far apart is really heart warming and seems to bring out all that is good in the human race. There are many people who knock the net but they should read some of your logs to see some of the good that it can do. I learned more about PD in a few hours reading your old letters than in the last 2 years. Oh, talk about laughter being the best medicine, Some of your jokes had the tears streaming down my eyes. Don't forget I'm a novice to the net so please feel free to correct or suggest if I do anything wrong or silly. All for now, glad to be "on board". Ernie Peters ([log in to unmask])