Monday 17 September 2007
It started towards the end of 2006, there was a tremble in my right arm which caused some irritation when trying to use a mouse, pressing the wrong button, deleting entire paragraphs, that sort of thing. I booked an appointment with a locum at the local surgery and he did some tests and came to the conclusion it was nothing to worry about.
Months went by and the tremble got slightly worse and started in a minor way in my right leg; additionally there was some pain in the arm. People at work noticed and told me to “Sort it!” so I booked into see my regular GP in July 2007.
The GP saw something.
She held a finger up and I had to reach out from my nose and touch her finger with my right hand. My arm wavered as it travelled to her. This raised a suspicion in her mind and she decided to refer me to a neurologist. In addition she referred me for x-rays to check for mechanical damage.
When she said this I was shaken; I was thinking Parkinson’s and she asked me what I was thinking. I skirted around the answer by saying I was afraid I would have something that I will have for the rest of my life. Her view was that it was unlikely to be something sinister, which was true; it was statistically unlikely to be something sinister.
I phoned Dad and he told me to go private. The arm and leg tremble combination was worrying him.
Typically, when the appointment came through I was due to be on holiday so I rearranged the appointment. I wasn’t worried, the holiday was great and I was looking forward to the neurologist putting my mind at rest.
On my return from holiday I saw the GP, on Monday 13 August. The x-rays were clear and showed no mechanical damage to my spine. She said the Consultant may decide on doing a scan as it is non-invasive. She felt the wobble could be treated, but she wanted to wait until the consultant had given a view.
On Wednesday 15 August I saw the Consultant Neurologist at the Nuffield in Glasgow. I went in quite happy and came out shattered.
It was the first time Parkinson’s was mentioned by someone with full knowledge of this illness. He went through my symptoms and did some movement exercises. He said the symptoms were not typical of a benign essential tremor and it could be PD. He said it would be highly unusual for it to be PD in someone of my age. Which is of course different to saying, based on what he had seen, that it would be highly unusual for it to be PD. He wanted to do an MRI scan to rule out MS, a scan which he “fully expected to come back clear”. He also wanted me to have a SPECT scan or DATscan which was the best scan for testing for PD. He was silent on what he expected to see in the SPECT results! Whilst the MRI scan can be done privately, the SPECT scan is an NHS service and you have to wait your turn. A four month wait lay ahead.
I cried that night. My wee girl was starting school the next day and the whole event was over-shadowed by this potential catastrophe. The next day was hellish but I convinced myself that I didn’t have PD and life was fairly normal within a day or two.
The following Monday I had the MRI scan. The scanner doesn’t look alarming until you lie down and they put a mask on you. I could choose music to listen to; I chose REM as I didn’t want to associate anything I liked with this unpleasant device! I was in for about fifteen minutes. The consultant phoned the following Monday to confirm everything about the MRI scan was clear which ruled out tumours and MS.
Nothing much happened for a few weeks. My right arm got stiffer and more cramped. The tremor remained fairly minor.
Wednesday 5 September 2007 was when I first really suspected PD. My arm was in poor shape and I wanted some answers. Unfortunately I looked for those answers on the internet.
The internet is, in general terms, a fantastic resource, however, it can be a bit too factual. Some of the medical resources read like the leaflet you get in a packet of tablets, entirely factually correct in that all the possible side effects are listed but not really representative of the reality of taking the drug. Wikipedia’s entry on PD is like that. Scared the shit out of me. There is no comfort to be found on that webpage.
I spoke to Dad and told him my fears. I think the realisation hit him that night too. Vic and I barely slept.
Thursday was grim. I faxed the Consultant and asked him to call me and be blunt. He phoned and said he was suspicious it was Parkinson’s Disease but was not “absolutely certain and was not just waiting for the results of the SPECT scan to confirm it was PD.” I heard the entire sentence but only took in the words “absolutely certain” and “Parkinson’s Disease”! He said he would try and get me a cancellation for the SPECT scan.
I left the office at 12 and went home. Vic was on her lunch by the time I got home so I had to wait until she returned to her lab before I could ask her to come home. I couldn’t bear the thought of being alone. Whilst I was waiting I decided to tell my brother, Gareth. An awful call. As I type this I am welling up again. I could only tell him my suspicions. As always, he had good advice. When I hung up I called Vicky and she headed home.
Whilst I was waiting for her the phone rang. It was the Consultant’s secretary. There was a cancellation for the SPECT scan that day for 3pm. That phone call was a blur. The secretary must have thought I was a bit simple as she had to repeat everything for me.
Vic arrived home and we dashed to the SGH. Someone looks after me, if I hadn’t called Vicky to come home I would have had to go on my own. I cried most of the journey but was composed when we got there. The nurse injected me with radioactive goo and sent me away for 3 hours. We went for lunch and picked up Beka and dropped her home. Vic’s brother Richard came over and did the necessary with the kids.
We went back to the SGH for SPECT scan (Simon and Garfunkel) and then went home for another poor night.
On Friday 7 September I was diagnosed with PD. At my request the Consultant phoned me with the result, at 11.53am. I was surprisingly calm. I expressed my primary concern that I would be able to work for the next 15 years. Given the nature of my work, he felt this was likely.
I phoned Vicky and my Dad and decided to go home. Before I left I told my boss, who was shocked and extremely supportive. I walked towards Vicky’s work and she met me half way. A hug I will cherish for the rest of my life. We drove home and I embarked on a series of phone calls to my brother and sisters which would change the lives of a lot of people. Chrissy was first, then Jen, Gareth, Karen and Ruth. Shock and sympathy, and lots of tears from me.
Gareth was on his way to see yet another sister, Tizzy, so he told her that night, as I didn’t want to phone her at school. I also told the in-laws; Anne, Martin and Richard.
The support and love I received from everyone touched and humbled me. I felt, and still feel very undeserving of it. The burden of this setback, and that is what it is, is being carried by a lot more people than just me, and that is a relief.
That Friday was a difficult day, the hardest I have ever gone through. Tears were shed in buckets.
I phoned my GP and she prescribed me some sleeping tablets and I got 8 hours that night. I woke on Saturday feeling numb. By far the worst aspect was not knowing what having PD means. I had waited months to find out what I had but once I knew I was none the wiser.
Vic was working that morning until lunchtime. So I went to see Vicky’s parents, Martin and Anne. Much shaking of heads in disbelief. Possibly the first time Martin has given me a hug, which was well received as, like me, he is 6 foot 4!
Karen arrived in the afternoon for a few hours and was a power of good. All the worries are so immediate but the consequences of those worries like house repossession or loss of quality of life are not. She put a few of them to bed; my family will take care of my girls and help with my finances should the need arise.
She visited again Sunday and Vicky’s family came round for Sunday dinner. By Sunday night I was feeling very positive and in control.
The next week was difficult. Chrissy came on Tuesday for a couple of nights and was a great help. She is so action focused it is difficult not to be motivated by her. On the Wednesday Vic and I went to see the Consultant again. He was positive, which was a relief, and said he would refer me to the care of Dr Grossett at the SGH. He offered me drugs, dopamine agonists, but I declined. I will be on drugs for the rest of my days, I am in no hurry to start!
The weekend was great, it was at a work golf event at Hanbury Manor. Vic and me and nae kids – magic. Not much time to think but I felt low by the time we left; I was wondering how many more events like that I would be a part of.
The last week has been difficult. Pain started in my left arm and I have been worried that it is a rapid onset of symptoms. Everything that happens to me I put down to the PD and that has to stop. Over the weekend I went to Paris with Edward, my buddy from school to watch the rugby. Ed’s Dad came too and showed us a great time. It was good but difficult. There was a lot of pain in my arms which causes worry and, which in turn, generates more stress and more pain.
We flew home on Saturday afternoon, and I was in a state. I had a few hours on my own at Heathrow and made use of the time to have a much needed “think” and develop some perspective. I am unconvinced a cure will come in time but there will be improved therapies and that is where my hope lies.
When I arrived home from Paris there was a letter from work waiting for me. I was extremely apprehensive opening it. The letter was a very touching pledge of support from my firm. I was overwhelmed by their unequivocal, simply stated, assurance of my place in the firm and their commitment to accompany me on the journey that lies ahead. So much of my fear and worry was lifted that night.
Karen came again on Sunday. She again lifted me. She told me about the four stages of grief – denial (didn’t really do that), anger (why me? Had a bit of that), loss/paralysis (plenty of that in Paris. Looking at Ed’s Dad and hurting that I will probably not be a sprightly 78 year old going to rugby with my kids) and acceptance/action. Acceptance is a bit away but action is something I can do now. She also helped me with a mind map of the issues which was very helpful. By the time she had gone the pain had gone from my good arm and I was good to go.
Sunday night we went to friends Alan and Karen for dinner. It was a great night. Once again the support of my friends is humbling. I went to bed feeling better than I have in a week.
Today is a Glasgow holiday and we went to Deepsea world. I saw some wobbly geriatrics which made me a bit shaky myself! I dwell on things and need to learn to live for the moment. It will come with time I suppose as I realise this is liveable with. At the end of the day, what doesn’t kill you must be endured, and I want to do better then simply “endure”
I am scared about going into work tomorrow. The last few weeks have really hit my confidence and even simple tasks are daunting.
Work was fine. The office manager was back and very supportive, she has PD in her family. By Tuesday night I was a happy bunny. Funnily enough I was helped by hearing that I was, in Dr Grossett’s (the consultant to who I have been referred) view, “routine” and he wouldn’t be putting me up the waiting list. I found this encouraging, an indication the doom is not, in fact, impending.
On Wednesday I saw my new physio. Our conversation ranged far and wide. It was terrific. Her personal view is that if I badge myself with PD I will go down a path. I am not a person with PD, I am Bryn.
We discussed using the power of the mind to heal and mend, to visualise the healing process. It immediately struck a cord with Karen’s walled garden which she visits in her mind when she wants to shut something out. I opted for planting dopamine cell bushes which sprout beautiful red dopamine flowers.
We discussed an exercise regime to improve my rotation, balance and posture (I’ve just sat up straighter as I’m typing). I left the session feeling inspired. More of the same next week.
Had a good chat with Tiz. She is right into the campaigning side of things, trying to advance stem cell research. This is something I need to look at closely.
On Thursday I went to the dentist – a clean bill of health. The first good news I have had from a health professional in 6 month! Called into the chiropractor next door to see what they can do for me. She made sense talking about clearing the nerve passageways and that chiropractic treatment has been known to stop tremors. I’m sceptical about this.
The GP was next, and she was very supportive. She thinks the power of the mind approach is a good one for developing a positive attitude. Less enthusiastic about the chiropractor stuff. I spoke to Karen in evening she has an open mind on the chiropractor and told me to talk to another chiropractor before deciding one way or the other.
I went to bed on Thursday feeling more wobbly than ever before, probably the result of the exercises I have to do, or it might be my mind playing games. I woke up on Friday however with more movement in my fingers that I have had in a month.
The weekend was fine, we went to Loch Lomond for a walk and lunch, and came back to reality with a resident’s meeting to discuss the recent flooding. This was a big issue in my life a few weeks ago and now it is tedious noise.
I scared myself on Saturday reading other people’s experiences of the disease. I felt ropey all evening and most of Sunday. We had dinner at Richard’s on Sunday which I found hard, maybe I am just not ready to enter the reality of other people’s lives just yet.
Work was great today. The sun was out and I felt I did the first full days work I have done in a month. I went for a long walk at lunchtime and had another positive boost from Chrissy. She has learnt so much about this condition in such a short space of time, she always has a positive message for me. We discussed what I read on Saturday night, and she told me to do what I can to help me, stick to the positives, learn about the disease. There is nothing to gained by reading about the shit time others are having.
To that end I filled in the form to join the Parkinson’s Disease Society tonight.
Monday 8 October 2007
I’ve had a great week. I went up to Aberdeen on Tuesday to see a client and came back buzzing. In some ways when you get a kick in the goolies you wonder are you ever going to be able to function normally again, will you be able to do the stuff you were previously good at? It was a huge relief when I realised that in many ways, most ways life is the same as it was four weeks ago.
On Wednesday I saw the physio again, we had a great session, she gives me such belief that I can do serious damage to the progression of the condition. Whether true or not, it is much more comfortable walking around in a positive mindset than any other.
My big brother Gareth arrived in the evening, it was great seeing him again. The weekend was spent fitting guttering to the house. It was very normal. The bad arm seems to be most fluid first thing in the morning, gradually stiffening up during the day. Friday evening was especially bad. I had spent the day wielding a hammer, and my arm was virtually immobile by the evening.
Sunday was a great day. Gareth is a keen mountain biker and offered to take me out. Normally I would have said no because it isn’t my bag. Normally doesn’t apply anymore however. I have resolved to challenge myself to take the opportunities which previously I would have made excuses to avoid. Today was one of them. I had a great time tearing about Mugdock Country Park on two wheels. Twenty four hours later my bum still aches but it was great fun.
I heard a couple of good news stories from Karen this week highlighting how this condition effects people in different ways. One related to a civil servant who was diagnosed at 44 but continued to work until retirement age (60) and died at 79. The other is a guy who was diagnosed at 37 and has spent the last 15 years doing things his contempories haven’t and is still fit and well at 52. It isn’t all bad news.
So I am now four weeks from the diagnosis and generally speaking I am fine. I feel I am dealing with it pretty well; I will cross bridges as I come to them. I feel there is little to be gained at this stage by meeting other people with PD, my life is fairly normal at the moment and I don’t have questions that need answered just yet. I am going to concentrate on getting fitter, stronger and more flexible and work out a way of contributing to the fight against this disease.
Monday 15 October 2007
Another good week, I feel I have made good progress this week in taking control of the condition. On Tuesday I went to a Bodybalance class at the local leisure centre. Bodybalance is a mix of yoga, tai chi and Pilates. I was apprehensive it would be a gaggle of bendy women and poor old inflexible me. I asked at reception whether men did Bodybalance, the lady replied “Oh yes, there was a guy….must have been about three years ago”. As it turned out there was only four in the class, three bendy women and myself. It was good fun. Just when I got into the position the instructor showed us, she would then perform some vicious manoeuvre intended to inflict as much pain as possible. I spent most of the class with my buttocks clenched for fear of passing wind.
Afterwards I had a chat with the instructor/sadist and she reckoned yoga would be a good discipline to learn, she emailed me with details of Glasgow yoga classes and I have enrolled on a yoga weekend for complete beginners in November.
Earlier in the day I had been reading “It’s The Thought That Counts” by Dr David Hamilton. It is an interesting book which discusses the power of the mind to assist in dealing with, and in some cases curing, conditions. He talks about visualisation, and visualising yourself doing things which were previously possible but now proved difficult. He also discusses the possibility of benefit being gained by other people visualising for you as well. After the class I lay in bed with Vicky and we both visualised me being able to write the number 3, brush my teeth right-handed and wield a carving knife. A few hours after falling asleep I woke up with my right arm feeling normal. It was amazing. I went back to sleep and my arm was back with its normal Parkinson’s rigidity the next morning.
Why did I feel the improvement? Was it the visualising? Was it the exercise at Bodybalance? Was it a combination of these things, a result of a positive attitude? I don’t know and I don’t really care. I don’t believe in miracles or bunkem practices but I do believe in the power of the brain to heal and that is something I am going to work on.
I started getting up to speed with the research that is taking place. There is a good source of information on the Parkinson’s Disease Society website. Their quarterly Parkinson’s News provides an update on the published research. The
Summer 2007 edition is extremely upbeat with reports on progress into drugs for treatment and stem cell developments. What is most heartening is Parkinson’s News isn’t aimed at people with PD but at healthcare professionals; a group to which presenting a positive outlook isn’t necessary.
On Friday we went back to my family home in Northern Ireland for the weekend, it was fantastic. Very normal. I have struggled to fit in my stretching and twisting exercises but I have gone out walking each morning. Yesterday (Sunday) I walked up the cliff path around the Blackhead Lighthouse. Sister Tiz accompanied me via my mobile phone. It is a beautiful walk and she was telling me she used to have to run it as it was the local High School’s cross country run. She used to dread it, now she would love to do it everyday. Me too.
Wednesday 24 October 2007
Its been a tough nine days since I last wrote. I haven’t done as much exercise as I had hoped and I’ve drunk more than is good for me! I got demotivated quite quickly. I should have gone to Bodybalance on Thursday but just didn’t want to. I feel as if I have paid for it. I was very wobbly down my right side by Sunday night and I went to bed scared for the future.
I’ve faired better the last couple of days but I feel fragile. Part of the problem are trembles which have developed across my chest and neck. They feel as if they are just beneath the skin, like a shiver rather than a tremble. Is it part of the condition or is it due to the stretching and twisting I have been doing? I don’t know. From the little I have read I do not believe they are part of the condition. Who knows? The not knowing is the worst thing about the condition.
On the other hand maybe ignorance is bliss. I am continually drawn to the forum on the PD society website and I keep finding the stories of people who had to give up work after 5 years. I can’t bear the thought of that. Maybe the people who use forums are people who are having a hard time and need support, maybe they are not typical of the average.
Sister Tiz came up for the weekend with Rob, it was great seeing her but I wasn’t on great form. Her visit marks the end of the six weekends since diagnosis which have been filled with my family, I think part of my blues is that I am faced with returning to normality, faced with facing up to this new life. I was looking forward to getting back to normal but now I am not so sure.
On Monday I walked from work to Partick station, about 3 miles. I was pretty pleased and slept like a baby on Monday night. I felt much better for it. Taking action helps.
Wednesday 31 October 2007
The last seven days have been better, I feel I’ve taken control again of my situation. I am sorting out an exercise regime by taking the plunge and joining a gym. I hate exercise and only find it tolerable in a group. The local LA Fitness has exercise classes before work which means I can get the exercise done before work and enjoy the day! I have an appointment to sign up at the gym on Saturday. So far this week I have swam (Monday), went to Bodybalance (Tuesday) and walked 3 miles after work (today). I feel pleased with myself. Bodybalance was testing. A career as a contortionist might be a useful side effect of the condition. The instructor had to keep looking away to stop herself laughing.
I have also made contact with another young onset PD person. He is forty four and six years in. Still working, driving and going to the gym! I am meeting him on Tuesday.
The skin trembles are still there, I feel them across my face and at night, on one occasion, in my good arm. They don’t scare me anymore. Maybe the progression of the condition is in steps rather than gradual; something changes, you have a panic, recover some normality and wallop, another issue to deal with. “Progression” is a word I have difficulty in this context. How can a positive word like progress be used in connection with this condition?
The most disheartening moment of the week was on Friday when I was unable to put my left cufflink in. It was an evening event and there are reasons for the difficulty; I was tired, it was the end of the day, I was stressed and I had drunk a couple of pints! Whatever the reasons, however, it was another painful first and was accompanied by a feeling of despondency
I saw my physio again today. She is another person who enjoys inflicting physical pain on me. I am surrounded by them. I could hear the woman at the gym licking her lips in anticipation of my joining. Another victim. The physio spent an hour pressing/manipulating/convoluting my spine to loosen it up. I am not sure why she just didn’t take a sledgehammer to it. Having said that, I feel looser this evening, as if each bone has fallen out with, and distanced itself from, its neighbour.