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how it first showed up, diagnosis, treatment received
and how I am at present.
I was born in Aldershot, England in 1954, and while my father was serving in the army, we travelled around a lot, spending three years in Malaya and three years in Hong Kong, before finally settling in Scotland in 1965 after my father signed himself out of the army. I went to secondary schools in Wishaw, leaving school at 17 for my first job as a clerk in Bank of Scotland. I left the bank in 1977 to work for a security firm, where I was employed as a driver for 13 years. I left this job after being held up at gun point in December 1990. I was unemployed for a short while before getting temporary work with the 1991 national census. I then undertook a training for work scheme, working with adults with learning disabilities. I worked for about 12 years in this field, then moved to supporting people with mental health problems. It involves working a 24-hour rota system including early starts, late finishes and sleepover shifts, which entail being at work for 24 hours at a time.
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My Story
This is my own experience of Parkinson's Disease,how it first showed up, diagnosis, treatment received
and how I am at present.
Background.
I was born in Aldershot, England in 1954, and while my father was serving in the army, we travelled around a lot, spending three years in Malaya and three years in Hong Kong, before finally settling in Scotland in 1965 after my father signed himself out of the army. I went to secondary schools in Wishaw, leaving school at 17 for my first job as a clerk in Bank of Scotland. I left the bank in 1977 to work for a security firm, where I was employed as a driver for 13 years. I left this job after being held up at gun point in December 1990. I was unemployed for a short while before getting temporary work with the 1991 national census. I then undertook a training for work scheme, working with adults with learning disabilities. I worked for about 12 years in this field, then moved to supporting people with mental health problems. It involves working a 24-hour rota system including early starts, late finishes and sleepover shifts, which entail being at work for 24 hours at a time.
First signs.
The first signs began to show themselves around March/April 1995 in a number of different ways. My left hand seemed to hang at an awkward angle, which I did not realise until seeing photos of myself, when I began to wonder why my hand appeared to hang the way it did. Occasionally, a finger would lock in position, and I had to move it with my other hand to free it. A slight tremor appeared in my left hand, and unusual pains developed across the back of my left hand. As the summer wore on, I experienced pains in my elbows and knees as well. If I lay on my side or put pressure on my left arm, I felt a shaking feeling within the arm.
I first consulted my local surgery in May 1995, and my doctor signed me off work for a week. At the end of that week I returned to my doctor, who signed me off once more, and arranged for me to attend the local hospital for some x-rays. These x-rays showed nothing unusual, so he sent me for a CT scan and further x-rays. When these showed nothing I was referred for a complete physical examination, blood tests etc. Three months had passed by this time and I was still off work, when I was referred to a visiting neurologist, who after hearing my story and watching me perform some movements, declared after just 10 minutes that he thought I had Parkinson's Disease. This came as quite a shock, as nobody had suspected anything like this at all. He arranged for me to come into the Southern General Hospital in Glasgow for three days of tests and observations in October.
Diagnosis.
I turned up at ward 68 a short stay ward where a number of tests and examinations were carried out. There were another CT scan, a spectroscopic scan, an apomorphine test and all the usual blood, heart and urine tests. The diagnosis was confirmed at the end of the stay. A physiotherapist and an occupational therapist came to see me and talk about problems I might experience and how to deal with them. I was also given advice about speech therapy as well. Once I got my head round all this new information and returned home I saw my local doctor, who was just as surprised, as he now confided in me that he had suspected a tumor, and that was why he had signed me off work for so long. I informed my employer about the condition and that I would be returning to work quite soon. They were very understanding about this, and the personnel manager and area manager came to visit me at home to express their concern and to offer whatever support they could to allow me to stay on at work.
Treatment.
When the neurologist confirmed my diagnosis, he asked if I would consider participating in a drugs trial over the next three years, stating that I was an acceptable candidate for this double-blind trial to compare the effects of two well-established anti-Parkinson drugs, sinemet and pergolide(celance). There would be no placebo use, and I would be given one of these drugs, but nobody, including the doctors, would know which one it would be until the end of the trial. Accepting this proposition would mean attending every month for about twelve months and then every three months for a time before reducing to six monthly visits. All the medication would be provided free of charge from the hospital and was packaged in such a way as to be anonymous. After discussing this with Fiona, my wife, I agreed to take part, as there were added benefits to being monitored so closely over this time.
The first dosages were very low and for the first three months I did not feel any benefit from the pills. Once the dosage increased after three months I began to feel the benefit and resumed a normal lifestyle for several months. I did not need much increase in dosage until after seven months or so, and at times I almost forgot about the PD. There was one occasion, shortly after an increase in dosage, when I experienced a sudden dizzy turn, and sounds seemed distant, but after consulting my doctor and the neurologist, my dosage was reduced to its previous level and life resumed its normality. After about a year I was beginning to experience on-off episodes and a number of strange feelings, such as tightness around my head, muscular pains around my waist, unusual bowel problems and strange sensations on my skin. The trial continued its course and at the end of three years I was offered a continuation which lasted just over a year. Between the end of the trial and the continuation, I had to come off all my medication over a two-week period, followed by up to two more weeks living without medication, then gradually building up again over the following week. The time spent with reducing and then no medication was not as bad as I had feared, although I did become very slow and stiff at times, and I had to stay off work and stop driving.
Once the continuation of the trial was over, I was informed that I had been on sinemet during the trial. This prescription would continue in a slightly different form, and remains so to this time. At the end of the trial I was taking sinemet CR and sinemet LS. Compared to a couple of years ago, my medicine does not last as long and I have to time it to coincide with my working hours, which vary considerably.
In December 2000 I agreed to participate in a trial of a dopamine agonist (unnamed) which should last about three and a half months. It's a double-blind trial with a 50/50 chance of receiving just a placebo. It is also being used to measure how tired I get in an attempt to ascertain if tiredness is a result of PD, or medication, or both. The trial began with two tablets a day at 0.5mg each, increasing each week, so in week 2 the tablets are 1mg each etc. It is hoped that I might reduce my level of Sinemet as these dosages increase, and reduce the occurrence of dyskenisia. Each week I attend hospital for an ECG, BP, pulse, temperature and movement tests, and I also answer questions about how I feel.
The first stage of this trial lasted until March 2001, however, after about 3 or 4 weeks I developed a chest infection, which resulted in a halt to the weekly increases, as it was found that my heart rate had increased. As a safety measure I was kept at level 3 for the remainder of this stage. My episodes of dyskinesia reduced quite dramatically during this time, and when it came to ending the trial's 1st stage, I definitely felt worse without the tablets, leading me to believe I had been on the active drug, rather than the placebo. After discussion with the hospital, I increased one of my Sinemet LS tablets to compensate for this worsening feeling.
There then followed a long gap until early July 2001, when I entered the 2nd stage of the trial, where I take the active drug and no placebo is offered. The conditions remain much the same, starting at 0.5mg twice daily for week 1 and the dosage increasing up each week until an effective level is reached and I can begin reducing Sinemet intake. I visit hospital each week for ECG, BP, and movement checks for up to 14 weeks, after which visits reduce to monthly and later on, 6 monthly. This could continue for up to 4 years, depending on when this drug is licensed.
I found out in late August 2001 that I had indeed been on the active drug during the first stage of the trial. During this second stage I continued to increase the dosage of the drug each week right up to the highest level at 48mg per day. However, during the last two weeks of this increasing level, I began to feel less benefit, and while I was on the top level, I felt quite ill at times. I contacted the hospital and it was agreed that I would reduce by two levels over two weeks to return to 24mg per day, a level at which I really felt much better, and which I am still on at present.
As I gradually increased the new drug, I began to experience episodes of increased dyskinesia, leading me to reduce the level of Sinemet LS I was taking. At the start of the second stage, I was taking 4 Sinemet CR(50/200) tablets plus 4 Sinemet LS(12.5/50) tablets each day. By early September 2001, I had completely stopped the Sinemet LS tablets, and hardly experienced any dyskinesia at all. The time span between dosages also increased, from about 3.5 hours at the start to almost 5.5 hours, giving me longer benefit during the day. The only drawback so far has been a much more rapid change from being "on" to "off". However, by remembering to take each dose before I go "off" I have been able to remain "on" for much longer. Occasionally I take one sinemet LS tablet if I particularly need a boost.
As time went on though, I gradually needed more medication, and by the spring of 2004 I was back to taking 4 LS tablets a day. However, my condition remained very stable with only little fluctuations. Unfortunately, the trial came to an early stop in August 2004 because it was decided that this trial drug was not providing any more benefit than existing drugs. I was put on ropinerole 3mg three times daily, but very quickly I realised that this was too much as I was having frequent dyskenisias. I cut this back to 3mg twice daily and also reduced my sinemet cr by one tablet each day. This worked for a few months until I was advised to take ropinerole 2mg three times a day and start taking half sinemet cr tablets in January 2005. I stopped taking sinemet cr and changed to half sinemet cr. In June 2005 I started on entacapone, initially 1 tablet per day for a week, then building up each week until I reached 5 tablets per day, at the same time reducing my half sinemet tablets from 8 per day to 4 or 5 per day.
Help at Work.
Once I returned to work I carried on as usual, not making an issue of my condition, although my employers were fully aware of this. However, over time, my handwriting began to suffer, as it became more difficult to use a pen. I discussed this with my manager, and a few months later, after a series of meetings with Employment Services and my own managers, I was provided with a laptop computer and printer, via the Access to Work scheme, to allow me to complete my paperwork. That was in 1996, and I am still using it at work.
Other assistance came after I had two occupational health interviews, with agreement being reached about a few aspects of my work I would no longer be expected to do, because of the long hours involved. In October 2001 I was able to change my shift pattern to avoid the early morning starts from home, working more during the day, rather than early am or late pm.
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Background
First Signs