Events prior to diagnosis of young-onset Parkinson's Disease and thereafter.
|Recollection of the things more or less as they happened. Probably the main incentive for the evolution of this website.|
| I intend to add extra details
in here as and when.
Incidentally, if there's an excessive amount of rambling, you're welcome to tell me about it via the Contact page, but as I'm not going for a grammar or literary prize, I can't guarantee any apologies. :-)
|All I know is that over the past few years I have seen all there are to see across the medical spectrum. My calendar since 1999 and especially during 2003 was dedicated to medical or medically orientated investigation and treatment. To name but a few :- an Orthopaedic surgeon, a Physiotherapist, a Sports Physiotherapist, a lifestyle guru, a cranial-sacral therapy guru, a yoga guru, a Reiki guru, a head massager, another Chiropractor, a senior GP, a Neurologist, a senior registrar. To name just a few of the treatments : x-rays, spinal manipulation, acupuncture, counselling, yoga, reiki, an Indian head massage, MRI scans, a nerve connectivity test, CAT scans, DAT scans, etc|
|As far back as I can remember, the only symptom which pointed to my present predicament was one of tremor in my left arm, especially when placing an object on a table, shelf, etc, where I had to extend my arm in the process. Periodically pointed out to me when handing something bulky to someone - or indeed placing a pint of beer onto the bar. Anyway, on with the details ! In 1999 I had a bicycle fall, not particularly serious at the time, I thought, even though I had banged my head like never before, grazed the front left side of my face and also pushed my jaw back due to the angle of landing so much that I couldn't close my mouth normally. Anyway, the ground had eventually broken my fall. I put the ringing in my ears down to the banged head and misplaced jaw. When I awoke the following day it seemed a good idea to take the day off from work to save having to explain the grazed face around the office. I'm a consultant contractor, I mused, so it doesn't look good especially when it was self (beer) inflicted|
|Having explained the fall and the now increasing complaints I was destined to visit the GP many times during which referrals were made for blood tests, ear tests and various other tests until came the exclamation (which could in hindsight be the quote of the 1990's) "What do you think is wrong with you ? - these tests cost money". I don't think I did it at the time, but in an out-of-body experience I saw myself produce my Goldcard from my wallet and retort "It's your job to discover what's wrong - how much do you want ?"|
|Once in a while, but on an increasing basis, I noticed a hesitation for my left foot to catch-up with the right whilst walking, seemingly as if it had caught momentarily in a rut or undulation in the path, pavement or whatever I was walking on. There was a walking stiffness especially in left leg; it felt like having to consciously pull left hip round to make a step. This is annoying I thought, and thus decided to see a chiropractor. I must have trapped a nerve which'll be sorted out - no problem. I had experienced freezing, when bending over to unplug the television. I found that I wasn't automatically returning to an upright position but having to consciously tell myself to stand up. When next back in the UK this week I'll have an x-ray to check for sure.|
|When back in the UK I saw the Outpatients Dept of the local hospital for the x-ray I had promised myself. It took a few minutes and was able to take the results with me. Also whilst visiting I received an invitation to go dancing with a friend. She took me to a local nightclub. We sat and chatted at the bar about various events and then it was time to dance. She was I knew a good dancer and I gave the warnings that I wasn't but would accompany her anyway. We reached the dance floor - I could hardly move to the beat. I was trying to move but it was like the area from my hips up to my chest was fixed. I couldn't twist my trunk. I made my apologies over the loud music and we returned to the bar. You must have really damaged your back, she said, don't worry, the x-ray results will show the problem and they'll sort you out.|
|The Chiropractor looked at the x-rays and with a ruler against the lit x-ray screen showed me that before falling forwards onto my jaw that I'd landed so heavily on my right leg that my pelvis was now unbalanced and my hip right side was higher than the left. I said that the Doctor analyzing the x-ray in the UK had said "nothing wrong" - yes she said - nothing wrong means no cancer, breakage, etc. So numerous visits to her were made until she had corrected the imbalance and twist.|
|Since the visits to the Chiropractor had ceased and due to the fact things were not pemanently better, I decided it was time to see my GP in the UK - we were now at the end of 2000 and I was feeling worse. Having seen the GP and having had his diagnosis as chronic stress I was signed off from work for a month. I put it down to all the long hours spent on the Euro readiness and Y2K approach and sorting out the aftermath thereof. I called the bank in the Netherlands to which I was assigned and advised them that I wouldn't be returning for the prescribed amount of time. In fact 3 weeks later I was feeling back to around 90% of capacity and returned to work. Things seemed ok for a month or four until such time I had to ask my boss for a week or so away. Chronic stress, I thought, only one thing for it - a health spa ! Which also incidentally is where and how I became a convert towards alternative therapies.|
|April 2001 - The spa's chauffeur picked me up from Heathrow Airport and the stretched Merc eventually wound its way through the country roads of Tring until turning into an impressively long gated drive. This meandering lane had extensive grounds on either side. Oh and also a helicopter pad designated with the usual H. The Merc stopped just outside the main building from which appeared a porter who was keen that I made no effort with my baggage. He delivered the aforementioned to reception at which a lady was already welcoming me by name upon my approach. "We'll take your bags to your room where you can relax until your appointment with Sister. Will 30 minutes be acceptable ?". "Er - fine", I replied. The porter set off, with me following like a flag in the wind, until we reached my room along the Garden Wing. The appointment with Sister, I was assured, was just a formality. I never boarded at school but I imagine the procedure would have been as daunting with Matron. My weight was taken, my height measured and also my blood pressure. "175/105" I was told. "Well you've had a long journey, we'll recheck it after your heat treatment in the morning."|
|The Heat Treatment. This apparently is what the spa was all about. -the founder swore by a daily heat treatment. This was a complementary daily routine - possibly the only compulsory activity whilst resident. The choice consisted of sauna & plunge pool ( not b****y likely ), a steam cabinet ( I had already lost a bit of weight - so no ) or a spa bath. The latter sounded ideal as it seemed the easy option. I had made my choice known to reception upon arrival and somehow this had filtered through to the spa. Upon my arrival the attendant greeted me & advised that my preference was ready. I was ushered into the bathroom and invited to test the water temperature - ideal. I awaited the attendant's exit from the room but it became obvious he wasn't going anywhere without having ensured I was in the bath safely. No accidents or stress - not at this health spa. At this stage I was unsure if this gentleman's eyes were fixed at a horizontal level or whether he was that professional that eye contact was always maintained, rather than gaze being dropped. As the week's baths continued I became of the opinion that it was the professional option. I clambered in. The attendant activated the whirlpool, informed me he would return in 20 minutes and left the room. The spa bath's power was that awesome that it was like having a massage - although I would soon be proven wrong about this thought. Anyway I sank down to let the bubbles & current do their job. Twenty minutes - I could have stayed there 20 hours. Anyway some all too soon 20 minutes later the attendant returned, switched off the power, pulled the plug and held up a huge white towel which bore the spa's name - this, it seemed, was my cue to exit the bath. Again the same horizontal eye-to-eye contact was maintained. I was left to dry off and told I would be escorted to the Relaxation Room prior to my massage.|
|The Relaxation Room - it certainly lived up to its name. I was assisted into the most comfortable reclining chair ever experienced and advised that the masseur would collect me in around quarter of an hour. The room had another 7 such recliners some 3 of which were occupied. A large sign requested and commanded silence. The subtle music was the only punctuation of the room. I was approaching delirium when the voice of the masseur summoned me.|
|The Masseur, a thin wiry man close to retirement age, with the military tone of a Sergeant major said "Morning sir, everything off, face down on the bench." Everything off ? I was only wearing a bathrobe and underpants. Without making any challenge or preference I complied. Again the eye level thing was evident. The massage was powerful but absolutely revitalizing. The space between every single rib, vertebra, toe, digit and any other bone was systematically and individually dealt with. Any muscle knot or even the slightest sign of one didn't stand a chance as far as this treatment was concerned. Never mind any martial arts training, I reckoned this guy could really hurt somebody if he wanted. When the massage was complete he said "If I were you, sir, I'd take a shower now." Take a shower ? I could hardly get off the bench.|
|The Cranio-Sacral guru. CST was explained to and recommended for me by Sister. She said it would in the circumstances for my visit - stress - suit my needs. After the brief outline I thought o myself "Yeah right" but who was I to argue. I agreed to give it a go. I was of the open-minded opinion to not knock anything until tried - at least whilst at the spa. The therapist - a quiet unassuming guy gave a broader outline but I was still very much the agnostic. We - or rather he - started. I just laid there on my back - clothed this time. I became aware of the phenomenon that energy was building up within and then leaving my head. A pressure built up behind my nose until it moved back into my head and out through my ears. Believable ? I left the session some 40 minutes later, drained. The therapist told me I would feel tired and maybe groggy somewhat. I returned to my room. Some 2 hours later I awoke with the clearest head I could remember for months. I needed to eat - it was thankfully nearly time for dinner. I showered, dressed - you had to dress for dinner here - and went to locate the restaurant.|
|I will complete this section very soon as there are more experiences at the spa. However when it was time to leave and face the world again the feeling was strange; as if coming out of a secure closeted environment into the big bad world. I suppose realistically speaking it was exactly that.|
|I returned to work. People asked me where I had been as I appeared revitalized and full of energy like they hadn't seen me for a long time.|
|I had increasingly become aware, from my work daybook, that my handwriting was becoming much different to the norm. It was now small, untidy and I could hardly comprehend what I had written. Also I had noticed my coordination was off. The simple task of mouse operation was becoming a little erratic. I was inadvertently right-clicking with the ring-finger of my right hand. I was now becoming particularly critical of myself. In my most honest state I admitted (to myself) concentration loss, mood swings and an increasing intolerance. This nervousness, the feeling of tiredness & fatigue after having arisen just 2 hours previously especially considering I had retired at 9pm, was not pleasant and the feeling of having done a day's work before it had even begun. My short term memory was worsening but thankfully the long term memory was ok. Maybe it was during this self criticism that I also noticed I was sometimes staring into space with a feeling of fixed gaze. Something else to report to the GP upon the next visit which was something of a blessing in disguise - the usual GP was away so I saw one of the senior practice partners.|
|A referral was made for me at one of the local ziekenhuises whereby I was put through what I can only describe as a connectivity test. This involved having electrodes taped to each foot and upper leg. Electric current was then passed through the connecting wires. The aim was apparently to measure the time taken for the current to travel to see if there was a difference between the two legs - I suppose to see if there was nerve damage in one or the other - nothing wrong was found.|
Getting tired before getting drunk - what - me ? - unheard of ! |
On many if not most evenings, the pub was visited. Usually it was one or both of the local English or Irish style establishments. As a contractor in a foreign land there's really not much else to do. I had always been able to hold my beer. Lager, cider, schnaps all in the same evening. I sometimes wonder how I got home - autopilot is a useful thing. However now I found myself becoming very tired before the effects of the imbibed alcohol had taken effect. Now there must be something really wrong ! I was unbalanced, unstable, unsteady on my feet. Going to the loo in pubs became an issue. I realized I was calculating the quietest & shortest route trying to avoid people, or rather avoidong where they were congregated.
"If I make a dash now there appears to be no-one in the way between here and the loo.". I was anticipating people's movements but of course there were obstacles - human or otherwise. I was unable to walk properly - feeling a stoop. But instead of the spine feeling curved outward it gave the sensation of being curved inward with my backside sticking out backwards and my stomach sticking forward - and me walking, or rather falling into step, at an angle of 45 degrees. Once moving there was also a problem - it felt like I couldn't stop, with momentum having taken over. I admitted to myself that I was now unable to walk properly, breaking into a run. The feeling was like my spine should be pulled out from the back to correct an increasing stoop. Every few steps I would stop - it was like a reset button had been pressed and I would be upright and ready to resume walking alas to only regress to the same posture. There was something else - a lack of automatic arm-swing on my left. It was time to enlist the aid of a walking stick.
|The timing is never right to tell family about these things. From the time of the initial suspicions of the neurologist to July 2004 I decided to keep the news from my family. There were two main reasons, firstly two birthdays which I didn't want to spoil and a holiday which I also didn't want to spoil. So I lived with the fact only telling a couple of friends about the predicament. When I was aware they had returned from their holiday I decided it was time to break the news to my parents. I had booked a flight to see them. Rather than have them pick me up from the airport and have the comment "Oh, how long have you been using a walking stick ?" I telephoned in advance. I think the words "lead" and "balloon" were probably contained in the receipt of the news. There was a stunned silence. They met me at the local airport the next day. We got home and the first question was about how this could possibly have begun. I explained that it was possible that the conditions of the bicycle fall could have brought it out, but it was more likely it was just the disease's time decision to show itself.|
|I was started on Requip (Ropinirol) in September 2004 I had calculated that I would be taking an incredible number of colour-coded tablets over the next months. However I found that after around 3 months I was getting pains in my chest when I went above a certain dosage. The professional opinion was that Requip was not for me. So in January 2005 I switched to Pramipexol (Mirapex / Sifrol)|
|Since then I have continued with the Pramipexol. It is still doing its job to date - October 2007. I have swapped and changed the dosage around in order to not increase intake too soon. The reason for this is obviously to to avoid ineffectiveness through immunity. The Neurologist advises to not take Levodopa until it is avoidable. My quality of life is fine and there's nothing I can't do.|
The above is history and it is just that; I'm now looking forward only. I'm happily married to a wonderful Italian girl. I make sure I socialise 3 times a week, inevitable drinking and attempting to compete at darts. Holding down a job is currently no problem however I am only supposed to do 20 hours a week but am there much longer than I should be. I am teaching myself Java - hopefully to further develop this cyberspace - not to mention VB, Access, etc, etc. This website will hopefully be able to track and report improvement, so keep watching. So far, all considered, if anyone asks me if I'd change anything, I'd say "probably the background colour of this website".
Please feel free to contact me.
I am an I.T. professional and would like to offer help and advice about any aspect of computers, computing, websites and the like including my Parkinson's experiences. I consider it important in this day and age not to be scared or doubtful about any aspect of I.T. Incidentally, I will give priority to others with P.D.