2 January 2008

Well we had a blast alright.  I got to bed at 5am on New Year’s Day and suffered one of the worst hangovers of my life.  I spent most of the day in bed.  When I did get up we went out for dinner with friends and whilst everyone else tucked into three courses with drinks, I ploughed through half a bowl of soup.  I managed to keep it down.  My Parkinson’s disease symptoms were worse than they have ever been. I have noticed how sleep is my best tool for leading a normal life.

 

Recent research has produced evidence that Green Tea helps slow down the destruction of dopamine producing cells.  I have started drinking green tea!  Apple and Pear flavour is my favourite so far.

 

I meet my PWP chum again tomorrow.  Vicky is coming too.  I am apprehensive to be honest, it will be interesting to see him in a home environment.

 

10 January 2008

The evening with my chum was fine.  He lives a full life at work and at home, he has movement difficulties but the bottom line is that he is happy and has a good life.  What interested me most is he is not yet on the maximum dose of the agonists after four and a half years.  As I understand it the agonists generally only last a few years.  Why is that?  Is it good diet?  Exercise?  Or his use of Co-Enzyme Q10?  Co-En Q10 has been linked with slowing down the progression of the disease.  I think I will discuss it with the consultant.

 

My D-day is looming with the consultant, I am looking forward to it because I might get some answers, some direction and an idea of how I might progress (I still find it difficult to use words like “progression” with this hideous condition).  My fear is going on the drugs.  How will I react?  I am scared of being a wreck.  It seems people suffer for a few months when they start the agonists.  There are so many stories of people having a shit time, apart from Michael J Fox no-one seems to have a good word to say about it.  I am struggling to stay  positive at the moment.

 

My exercise regime is back on track.  This week I have been to Pilates again and had a spin class.  I am trying to do as much as I can within my lunch break at work to minimise the impact on my family life.

 

Sunday 13 January 2008

Felt a tremble in my left leg last night.  It was very frightening.  Vic and I both watched my trousers wobble.  Horrible.  I read somewhere it can take 10 years for the tremble to migrate across your body.  This brings up a horrible dilemma associated with this disease.  Do I research knowing that the answer might scare me even more than the ignorance related fear I have at the moment.  My fear is the disease is developing rapidly.  It could however be exercise related.  I have done a lot this week, including a Pilates class yesterday.  Argghhhh!!!!

 

Tuesday 15 January 2008

Had a lousy couple of days with worry.  The leg tremor hasn’t amounted to much but my left arm is painful and tired.  I am paranoid about it.  I keep stopping and looking for tremors.  I was convinced it was trembling today and I showed it to Andy (who I work with) who compared it to his hand.  His was trembling more than mine!  He went away worried.

 

I asked a couple of people from the PDUK forum about progression and their responses were reassuring.  Dad also found some research which says that tremor dominant people progress more slowly.  Lets hope so.

 

My current thinking is to go on the drugs next week.  I need a lift and to feel normal for a while.  I feel as if there is an elephant with me everywhere I go and I could do with applying some camouflage to it for a while!

 

I have got my list of questions for Dr Grosset, I hope I get to ask them.

 

Saturday 19 January 2008

Yesterday’s visit to the consultant went well,  I am now part of the system!.  The clinic is run by Donald and Katherine Grosset with a few Parkinson’s disease nurses, there are 400 patients and I will be seen every 6 months.

 

I saw Katherine yesterday and we had a great discussion.  She explained that there are many different types of Parkinson’s disease but bradykinesia is the constant through them all.  It is the bradykinesia which makes it difficult to write.

 

She also confirmed that tremor dominant strains progress more slowly than other type.  Different people progress at different rates but generally the rate of progression for a given person is constant.  Given I first noticed this thing about 18 months ago, the progression has been pretty slow.

 

Although the tremor is irritating and visible, it is the least disabling of the three symptoms.  The first level of drugs, the agonists are good for dealing with the bradykinesia and will sort my writing out but are less good for the tremor.  A tremor is not a reason for going on the drugs.  Katherine’s view was that the drugs should be started when the symptoms become more of a disablement and not just an irritation.  We agreed that I would delay starting the drugs.

 

She said that the vast majority of Parkinson’s disease is non-genetic so Gareth and Dad are probably OK!

 

I asked about the blood tests I had done in the summer and they all came back clear, copper levels etc are all fine, which rules a lot of other, nastier diseases.

 

She felt that Co-enzyme Q10 would be of little benefit in slowing the progression, but she felt there were benefits from doing plenty of exercise.  With regard to co-en Q10, she said it was fairly old research and enough people had rushed to try it for it to have been noticed if it had a positive effect.  Equally nothing detrimental had been noticed from the high doses.  I asked her about the neuroprotective qualities of some drugs such as MAO-B inhibitors.  She said these were claims made by the manufacturers and there is no evidence to back these claims up. The only major study into one of the drugs was the Datatop survey into selegiline (MAO-B Inhibitor) which found no evidence of neuroprotection.

 

I found the whole experience very reassuring.  If I need to see them between appointments I can do so.  This means I can monitor myself for a few more months and stay in control of the situation.

 

Sunday 27 January 2008

I have had a great week since seeing Dr Grosset, she took a weight off my mind.  However, I have had a slack week with my exercising, eating and stretching and really feel it.  I did a session on the treadmill and Pilates today and feel much better for it.  I must keep on top of the exercise regime, it does me good.

 

Saturday 2 February 2008

I was dreading January.   From my diagnosis I was focussed on getting through to Christmas, I was putting off difficult times until the new year.  Now we are in to February and things are OK.  I am surprising myself;  I think I am coping very well.  My approach is to do what I can, like exercising, to take the opportunities that I am presented with and to not worry too much! I am much more appreciative of my family and much less likely to do things I don’t want to.  Life is good.

 

I met with my Parkinson’s chum this week.  He saw the neurologist the same week I did and he has started the next stage of the drug regime; Levodopa. He looks better for it but I think he is a bit scared.  He is on the final drugs stage, I have the comfort of knowing my symptoms can be improved by two stages of drug regimes and that knowledge is quite comforting.

 

As I have said previously, everything gets assessed, every twitch, shake, stagger and pain gets analysed and is generally accompanied by a stab of fear, fear of progression. I mentioned to my chum that I get a cramp in my foot when doing Pilates.  He says it sounds like dystonia (a cramp-like symptom of PD).  The mind  goes berserk!  I have suffered these cramps for years:

 

Has my Parkinson’s disease been around longer than I thought?

If so, is that good because it indicates slower progression?

Or is it bad because it is another one of the symptoms?

Does that mean I have progressed more than I thought?

Is it dystonia?  Maybe it is just cramp.

What does it all mean?

Does it mean anything?

 

And so on.  It is very tiring.

 

My symptoms have changed over the month, the tremor in my jaw has virtually gone but I feel my good arm is less useful (maybe just tired) and my sleeping isn’t great.  I have also had an excellent month at work, which gives me a great lift.

 

Sunday 10 February 2008

The last week has been pretty good.  I have been doing plenty of exercise. I have got into a routine of three cardiovascular sessions, one weights and two Pilates a week.  I am feeling the benefits of it.  It allows me to eat and drink plenty without putting on weight!

 

After last week’s great buzz about work, this week has been less positive.  Work can drive my mood in all areas of my life.  A hard time there leads to an increase in stress levels which leads to deterioration in my feeling of wellbeing and brings forward the worries about symptoms and money, which are never far from the surface.

 

We had a dinner party on Saturday which was great but also showed me the limitations I now face.  I struggled at times to stir the dinner, and even eat with a fork in my right hand for a prolonged period.  Maybe my condition was compounded by the weights session  which I had done in the morning.  I am always fearing the worst!

 

Sunday 17 February 2008

Another hard week at work,  the fear of losing my job has been with me all week.  I am paranoid that the company will take every opportunity to build a case against me so they can be shot of me.  Nothing anyone has done gives me cause to think this, just plain old paranoia.

 

The planning for walking the West Highland Way is coming on well, dates have been set and accommodation is being booked.  Pretty excited about it.

 

We spent the weekend in Elie once more.  We had a marvellous time.  I truly hope that I will always be able to enjoy sitting around a table for eight hours drinking beer, eating food and laughing with friends.  Whatever this disease takes from me, please don’t let it take that.

 

Sunday 24 February 2008

This has been my worst week for symptoms.  I have felt very shaky down my left side for none of the usual reasons (drink, lack of sleep etc).  This morning I was watching a movie with the girls and my head started going side to side on its own.  Frightening times indeed.  Trying not to think about it.  I am hoping it will pass and I will go back to how I was or as near as.

 

I have signed up for the Men’s 10K Run in June.  I went to the gym this morning and ran 5K in under 31 minutes which pleased me no end.  I have never run so far in one go in my life.  I didn’t get my usual reduction in symptoms which occurs after exercise.  This depresses me no end.

 

I was thinking this week that I have rarely been happier than I am now.  I have got a real focus to my life and have stopped paying attention to things which used to be significant but are in fact irrelevant.  I was explaining this to one of my pals and he suggested I try and contract another disorder and get really happy.  That made me laugh.

 

Sunday 9 March 2008

The increased shakiness is still present, the head wobble has not returned but I do feel more wobbly overall.  I tend to sit with my arms folded in meetings and avoid holding things in my right hand.  The changes occur in steps and it takes a bit of getting used to the new symptoms.

 

Last weekend big brother Gareth  came over to help me build a carport.  It was a great weekend.  I was pleased how normal it was, I was expecting my Parkinson’s disease to raise its head and restrict what I could do, but there were no problems. Apart from being left hanging from the rafters do you to a step ladder malfunction!  I spoke more about my Parkinson’s disease than I expected to.  I don’t want to become a self-obsessed bore.

 

When G was over I didn’t go to the gym for a week and I really felt it.  I went back on Wednesday and it was a struggle!  However, I went again last night and broke 30 minutes for 5k on the treadmill.  Felt great afterwards.

 

I had my best Pilates class today, I felt really in control of my movement.  I do shake like feck down my right side on some of the movements.

 

I turn 37 this week.  I wish it was 57, I am too young to have this disease.

 

Sunday 16 March 2008

Another birthday come and gone.  The girls made me a cake and I had a great day.

 

My symptoms have been quite variable this week.  I think as they become more prominent (but still largely unnoticeable to those who don’t know), they vary more depending on circumstances.  For example, last night I went for a thirty minute run and had eight good hours sleep, woke up this morning feeling great.  Met a pal at Starbucks, had a coffee – tremble got much worse.  I had two nights on the bevy last week and I was a bit of a mess.  Good fun mind you.  You become much more aware of cause and effect.

 

 

The Wobbly Williams website (www.wobblywilliams.com) is up and running together with the Just Giving page to raise money for the Wobbly Williams Walk in September.  I am really looking forward to the work. As I have said before doing something is better then doing nowt.

 

Thursday, 20 March 2008

I sent an invitation out to some friends to join the WW Walk in September and we are now up to 18 walking all or part of the West Highland Way. I am hopeful we can get 30 walkers by the time we depart. I have set a target of raising £10k for the Parkinson’s Disease Society. I don’t know if I am being a touch adventurous. We shall see.

 

I am not exercising enough at the moment. Circumstances have kept me away from Pilates for the last two weeks and I am really feeling it. Life will get back to normal next week, routine is good for me! Ran on the roads for the first time in years this week. I ran a loop which is predominantly uphill for 2k to the ski club and then downhill back to the house. Good run, should have worn my glasses, nearly ran into a duck pond.

 

It is the Easter weekend. We are away to a caravan in Dumfries for the weekend in the morning. We are meeting up with two of my sisters; Tiz and Chrissy and Tiz’s husband Rob. Seven in a caravan. Should be fun, I will be taking my ear plugs.

 

On Saturday I am meeting up with a 36 year old with Parkinson’s disease who I have got to know through one of the Forums. We get on like a house on fire online. I wonder what it will be like in person. She swears more than anyone I know. Describes herself as a gobby cow. Looking forward to it.

 

Monday 24 March 2008

The caravan was great, whilst Britain bathed in guff weather we found an oasis in Southerness, on the coast near Dumfries. A bloody cold oasis mind you.

 

The meeting with my fellow Parkie on Saturday was good.  We got on like a house on fire.  No-one knows what I am going through better than someone else who is up to their neck in it too.  It was good talking with someone else who has the same problems as me.  She is on dopamine agonists and her symptoms are unnoticeable.  She has given me food for thought.  For example she says she couldn’t dance properly before starting the drugs.  I have never been able to dance, maybe I should start on the drugs straightaway.  I wonder if I will be able to play the piano.

 

A debate is raging in the press over the Human Fertilisation and Embryology Bill which is coming before parliament.  This bill will allow the creation of human-animal embryos for research.  The Catholic church has weighed in against the bill and is pressurising MPs, and in particular Catholic MPs to vote against the bill.  Cardinal Keith O’Brien described the creation of human-animal embryos as “monstrous”.  What is monstrous is that MPs will be swayed by the inaccurate views of this man and others like him.  The Church is on the one hand saying the government is wrong to order Labour MPs to vote in favour of the bill but on the other hand is imposing its will on those same MPs. MPs are elected to represent their constituents not their consciences nor ill-informed, out-of-touch and unelected religious leaders like Cardinal O’Brien. I’m with Lord Robert Winston who told the Daily Telegraph he thought the cardinal’s statements were inaccurate. He said: “They are misleading and I’m afraid that when the Church, for good motives, tells untruths, it brings discredit upon itself.

 

The counter-arguments are being presented strongly.  The whole of yesterday’s Independent newspaper’s front page was devoted to a Parkinson’s breakthrough story (see yesterday’s blog entry) .  This is good news (especially for mice), but the cure is a long way off.  A very long way off if Cardinal O’Brien gets his way.

 

Friday 28 March 2008

The Wobbly Williams Walk is gaining momentum.  There are now 30 people walking all or part of the walk, with 9 intending to do the whole thing.  It is a fantastic effort and I am extremely grateful to everyone who has got involved. Eddie offered to supply T-shirts with the Wobbly Williams logo for the participants.  He offered to supply 30 when there was only 10 signed up in total.  At the time I thought 30 was a trifle optimistic! What do I know?

 

I emailed my MP this week seeking her support for the Human Fertilisation and Embryology Bill.  I expected to get a brief reply, instead I got a balanced well thought out response.  At the moment she is leaning towards supporting the creation of hybrid embryos.  If she does I will probably vote feel obliged to vote for her party, the Liberal Democrats, in future elections.  This is a serious side effect of this condition which people are not warned about.

 

As part of the baggage of this condition you have to tell the DVLA who issue driving licences in the UK.  I got the depressing news this week that I would have to renew my licence every 3 years.  Another victory for the PD!  On a similar topic I had a coffee after a week without caffeine.  I now know why people with Parkinson’s disease avoid caffeine.

 

This week’s worry is about my foot bending inwards as I run and walk.  Much scrutiny takes place as I walk and run with the same answer as always; time will tell.

 

Busy weekend ahead; four kids parties, a dinner party, the Old Firm game and a funeral.  I am expecting Hugh Grant to appear any second.

 

Tuesday 1 April 2008

The weekend was grand, I was very symptom free.  Living with a condition like this involves a constant process of comparing how I am now to how I was.  I noticed at the Old Firm game that my tremble in my leg was minimal, compare that to being at a Wednesday evening game back in November at which the leg was depressingly wobbly.  Why is that?  Probably because the game on Saturday was earlier in the day and I was sober (which was a first for an Old Firm game – I have the funeral to thank for that).

 

To go back to my opening statement that I was very symptom free, maybe that is just in comparison to recent weeks rather than overall.  Maybe I should think less.

 

The embryology bill debate rumbles on.  Cardinal O’Brien is to meet some stem cell scientists for a debate.  A good summary of the bill and what it means can be found here: http://www.guardian.co.uk/science/2008/mar/27/stemcells.medicalresearch

 

I am going to get fitted for a pair of running shoes tomorrow to see if it solves the bendy foot problem, I have scrutinised my current pair and there is definite wearing on the corner.  So it probably isn’t Parkinson’s disease related.

 

Sunday 6 April 2008

Never made it to get fitted for the running shoes, however Dad reckons a bendy foot may be hereditary.  The gifts your parents give you.  After scrutinising the offending running shoes, they are worn down on one corner.  I tried out a pair of unworn trainers and the foot didn’t bend noticeably.  And believe me I looked.  I nearly fell over looking.  People must of thought I was checking for dog poo: “That Irish bloke thinks he’s stood in dog poo.  He’s on a treadmill for good sake”.  The periodic introduction of dog poo would add a touch of realism to running on a treadmill.  It would solve the problem of people spending too long on the machine at peak times; the longer they are on it the greater the volume.  Perhaps you could introduce bird droppings too.

 

I have been to Pilates three times in five days.  I am very sore, but feel much better for it.  I am not aware of any evidence which shows it does help Parkies in particular, but it helps me.  One of the Parkinson’s disease websites has reported this week that Tai Chi has no effect on slowing progression.  The website author (who has PD) was almost gleeful in reporting this.  I get the impression that some people with this condition take pleasure in stamping out hope in others just because they have lost theirs.

 

My symptoms have been good this week; the lack of caffeine, plenty of sleep and no worries have helped.  Interestingly I read one of my friends at PDUK is having a rough time with her Parkinson’s disease and this has caused a wee deterioration in me.  She is very inspirational and it is the first time I have known her too be down about her illness.  She puts her rough time down to stress and no sleep.

 

This has been Ella’s birthday weekend.  We had a party for her with Whizzy the Wizard making a two hour appearance for a hefty sum.  He is retired and does eight kids parties a week.  I do a bit of juggling, I could have a go.  Maybe a Parky on a six foot unicycle juggling five knives at a kids party wouldn’t be such a good idea.

 

Sunday 13 April 2008

I was interested to read that the incidence of Parkinson’s disease is higher amongst people with low levels of cholesterol.  I remember about twelve years ago, at an earlier (failed) attempt to get the exercise bug, I had a cholesterol test at the gym.  After taking my cholesterol measurement the first time, the doctor recalibrated the machine because my cholesterol was so low he thought it was bust.  If only I hadn’t lived such a life of abstinence since then.

 

I have spent the last few months taking my exercise on my feet, this week I decided to take it sitting down and go to a spin class.  Purgatory.  My wobbly arm shook and I could see my wobbly leg jerking round.  Quite frightening.  I am a believer in the “use it or lose it” theory when it comes to Parkinson’s disease so I as much as I want to bury my head in the sand when things like that happen I need to keep at it. It isn’t all bad, I ran 5.4k in 30 minutes this morning and didn’t notice the bendy foot.

 

I played golf with Matt yesterday.  Great fun.  I discovered an unexpected bonus caused by the condition.  Normally when I am playing a shot, a multitude of things to remember run through my mind: keep the head down, don’t over-swing, get my hands through the ball (never worked out what that actually means) etc.  Now, however, a single thought dominates; “keep the club head still”.  All other concerns are banished. Its great, just stand up and hit the ball.  I had my best round in well over a year.

 

I have been thinking about the effect stress has on my symptoms.  I have realised the most stressful situation I encounter is when the symptoms change.  I have previously said I thought the disease progresses in step changes, now I am not so sure.  My current thinking is the disease progresses at a continuous rate, its just I don’t notice until a new symptom, or level of symptom, is noticed, at which point I get stressed out, exaggerating the new symptoms.  That’s this week’s theory anyway!

 

Ella rode her bike without stabilisers this week for the first time.  Go girl!

 

Monday 21 April 2008

I emailed a lot of people last night to tell them about my PD.  I am very apprehensive about the reaction, some of the people haven’t heard from me in a few years, it is a difficult subject to restart a conversation on!

 

We spent the weekend in Aviemore.  We fed the reindeer, we went sledging on Cairn Gorm and Ella puked all over her bed.  Pretty typical weekend really.  It was very relaxing.  I would have got more sleep if it wasn’t for Beka snoring and the smell of puke.

 

My symptoms are not great, I feel very shaky down my right side.  I am not getting enough exercise or sleep and that is not sustainable.

 

Speaking of exercise, one of my friends, Slim Macmillan, is putting a plan together to get a team into the Great North Run in October.  I am going to give it a bash.  I have also entered the ballot for a place in the London Marathon in April 2009, just in case I find I enjoy that kind of thing.  I have always wanted to run the London Marathon and it would be good to do one before I am cured.

 

Sunday 27 April 2008

With hindsight my email was probably a little blunt!  The news was a shock to a lot of people, and maybe my delivery could have been a little more cushioned.    The response was positive, however.  We are now up to 54 walkers for the West Highland Way, 21 runners for the Women’s 10k and over £2k in sponsorship.  One of my mates, Chris, is going to make a video diary of the walk.  I also spoke to two potential corporate sponsors this week.  Its taking shape.

 

It has been a funny week for symptoms.  It is hard telling what is a symptom and what is attributable to exercise or getting older.  What will it be like when you throw the drugs into the mix and side effects play a part.

 

My leg had a bubbling sensation under the skin  for most of the week but as with 90% of the other bodily changes I experience it passed without consequence.  It has been replaced with a left (good arm) ache which has resulted in my holding my left hand out  to check for tremors.  That would not be good.  I feel like I am in the wobbling hand scene from Blazing Saddles:

 

Jim: Look at my hand. [raises hand and holds it level]

Bart: Steady as a rock.

Jim: [raises other wobbling hand] Yeah but I shoot with this one.

 

Vic showed me a magic trick this week she learnt from Michael J Fox’s book Lucky Man. My right thumb was doing a wee jive, as it is inclined to do, and she grabbed it.  She held on for a count of five and let go.  It had stopped moving.  I might hire a Swedish nurse to go everywhere with me to grab parts of my body as they start moving of their own accord.

 

I was out for lunch with two friends on Friday and discovered a downside of keeping a blog.  Every time I told one of my anecdotes their eyes glazed over because they had read it on the blog.  I will be more selective regarding what I write!

 

Sunday 4 May 2008

I am having a real dilemma at the moment over whether to start taking the first level of drugs, dopamine agonists.  I have been mulling it over since my tremor became more pronounced in March and meeting the recently diagnosed Parkie over the Easter Weekend who is doing so well on the agonists.  I brought it to a head this week by going to see my GP.  We had a chat and she is going to contact my neurologist and see what she says.  I also talked it over with Dad and he took a lot of the emotion out of it.  He struggles, like I do, to make decisions when there is little information, and the information available is suspect.

 

Many questions have been going through my mind but after a few days spent deliberating it comes down two questions, two sides of the same coin:

 

Why do I feel the urge to take drugs?

 

Well, there are a number of reasons.

 

Firstly, I find writing and typing difficult .  Writing is more of a problem than typing.  The other symptoms are much less troublesome; I can run, walk, tie my shoelaces, read a book and wipe my arse (I write this only because Vicky has drawn the line at arse wiping).  My right arm feels dead most of the time, as if I have been lying on it.

 

Secondly, I want to feel normal for a while.  Will the drugs (dopamine agonists) do that?

 

Thirdly, I may not be doing myself any favours by not starting.  There is a school of thought that if you delay starting, you are always playing catch up, you never get the maximum benefit of the medication.

 

Finally, the agonists are rumoured to be neuroprotective, that is they may slow the progression of the disease down.  These rumours are circulated by the drug manufacturers, however.

 

Why do I want to resist taking drugs?

 

Again there are a number of reasons.

 

Fear.  I will be on drugs for the rest of my life, that can not be good for you.  I am also scared of the side effects.  As I said recently I have enough difficulty distinguishing symptoms from the aches and pains of life without throwing a third variable into the mix.  Also I feel I have a good idea of how my symptoms are progressing, which I may lose if I mask them.

 

The counter school of thought to the always-playing-catch-up-one is you only have a span of 15-20 years in which the drugs are effective, the later you start, the later you finish.

 

I think I am suffering under the impression that starting the drugs is in some way giving up.  But no more so than, for example learning to write left handed or type using only my left hand.

 

I see my GP again this week, but I think, on balance, I will hold off.

 

Friday 9 May 2008

I have spoken to a lot of people in the last few days and I am swaying towards starting taking the drugs.  The symptoms are presenting themselves as stiffness and slowness in the right hand.  This causes problems with writing and typing.  These symptoms mostly affect me at work, causing me stress I can do without.  I need to realise that the progression of the disease will not be slowed down by not taking meds.  It is unfortunate that the presentation of symptoms seems to be concentrated on my right hand but that’s life. When I’m at home there is a great deal of agonising and wondering what to do for the best and that isn’t doing me any favours either.  However the disease causes me no problems with everyday movement and if I am not writing or typing, I don’t notice it. Much.

 

I have spoken to my two Parkie pals and they explained their reasoning for starting medication.  One pointed out that like a diabetic I am missing a chemical and if I was a diabetic I would not think twice about taking insulin so why have the big debate about taking dopamine?  The other pointed out I am young and have a very young family and at this stage it is all about quality of life.

 

I also saw my GP and, whilst she wouldn’t say it, l got the impression she thinks I should go on the meds too.

 

I am putting off the decision for a week as over the next seven days I play seven rounds of golf and am going to the UEFA cup final in Manchester.  The scrap of comfort I have with the decision I am making is I will never know if it was the right one.  Everyone suffers differently from the disease and you have no-one to compare yourself too.

 

Tuesday 13 May 2008

Off to Manchester in the morning to the UEFA cup final.  I feel like a kid before Christmas.  It is going to be an amazing experience.  We set off at 7am and hope to be in the city centre by midday.

 

The last game I was at which was as big as this was the FA cup final a few years ago between Southampton and Arsenal.  I met up with my Southampton mates before the game and got so drunk the match passed me by unnoticed, I am not making that mistake again!

 

I have to be in Carnoustie for a 9.30 tee-off on Thursday morning.  This has proved a challenge.  I have to get a train at 11pm to Preston and the get the sleeper to Carnoustie at 1am.  This is my dream week!  Wish me luck.

 

 

Sunday 18 May 2008

Manchester was a rollercoaster. It was an amazing experience but at times it was frightening and ultimately it was very disappointing.  I went down with Scott and Melissa, and we got into the city centre at about 11.30.  Already the drink was flowing.  We went to Albert Square and spent most of the day there.  There were big screens, live music and a fabulous atmosphere.  Richard Macmillan, who got me  the ticket arrived at 4 and we had some beers and soaked in the whole experience.  We left the square at 5 and walked to Piccadilly station, the streets were jammed, god only knows how many people were there.  We had dinner at the station and still people were pouring off the trains.  When we left the city centre the atmosphere was great and a street party was in full swing.

 

We got to the ground about 7 and the game passed in a blur.  Once it was over I set off into town to get my train.  The problem was another 5000 people wanted to get the same train.  I managed to get near the front of the queue but then got trapped on a walkway up to the platforms.  It was not pleasant.  From the top of the walkway a crowd of people of stretched as far back as the eye could see.  All wanting on my train.

 

Over the next hour rumours of rioting, stabbings, deaths and shops being burnt out were spreading through the crowd.  You could feel the tension and impatience to get away.  By this time it was 11pm and my train was due to depart for Preston at 11.11.  The crowd started to get aggressive and began verbally abusing the police officers who were between them and the platforms.  The police tried to calm down the worst of the aggressors and whilst they were doing this about a dozen of us nipped by and got to the platform.  There was my train waiting with tonnes of empty seats.  Couldn’t believe my luck.  The police must then have let people through as the train filled up rapidly.  In any event, the train left at 11.20pm much to my relief.

 

The first stop was Manchester Oxford Road.  More people got on and the train was jammed.  This was the start of the problems.  We sat there for half an hour before it was explained the doors couldn’t be shut safely due to the number of people.  As it became apparent I was going to miss my connection to Carnoustie, I had a debate with myself about what to do for the best – stay on the train and hope to get to Preston or leave and try and find somewhere to sleep in Manchester.  I decided to leave the train, and I did just in the nick of time.  As I was walking off the platform about twenty police officers in riot gear arrived to clear the train.

 

By now it was midnight and I was in part of the city I didn’t know.  I knew places to stay but I would need to get a taxi to get there.  I soon realised there was thousands of people in my position all trying to get taxis!  It was chaos.  At about 12.30am I had a brainwave and phoned my running buddy Alan who was also down for the game and staying in the city centre.  As luck would have it, he was just heading back to his hotel and was about a mile from me.  I have never ran so fast in my puff.  I passed scenes of devastation, including Albert Square which was a sea of bottles and cans.  I had to ask directions from a couple of police officers, who given the night they had just had, were brilliant.

 

I met up with Alan and Iain and got a few hours kip in their hotel room.  We then had the problem of getting back to Glasgow.  I spoke to Richard, my brother in law, and he got us places in a stretch hummer the next morning.  We got back to Glasgow at 2 and I got into Carnoustie at 4.20, ten hours later than planned.

 

The rest of the week was to be spent golfing.  I had organised four days of golf for two North American patent attorneys, Dave and Rich who we do a lot of work with and are really good guys.  They came over on Wednesday and after a quick change of clothes I joined them and my boss, Bob for the final 11 holes on the Burnside course.  I was knackered.

 

I hadn’t planned to tell Dave and Rich about my Parkinson’s disease until after their visit.  Unfortunately one of our party mentioned it to Rich on Wednesday, and I had quite an emotional chat with him about it.  He does patent work for the Cleveland Clinic who are involved in Parkinson’s disease research and I am sure we will have many chats over the years ahead.  One of the plans I have for WobblyWilliams.com is to directly fund research and Rich may be able to help identify the people who can make best use of the funds.

 

What has surprised me is that although I have had little sleep (Tuesday 5 hours, Wednesday 3, Thursday 6, Friday 3, and Saturday 6) my symptoms are pretty much as they were before I left.  Because I have been on the move constantly, and not doing any writing or typing, I haven’t thought about my Parkinson’s disease much over the week.  Again it raises the questions of whether I should start taking the tablets.  I have spoken to my GP a couple of times and my current thinking is to start on Wednesday.  That will give me four clear weeks to get used to them before we go to New York.

 

The first Wobbly Williams fundraiser, Karen Wood, ran in the Women’s 10K in Glasgow today.  Despite having a flu bug she completed the course in 47 minutes.  She is a star.

 

Tuesday 20 May 2008

I have taken the plunge and started on ropinirole, a dopamine agonist, this evening.  I have never put so much thought into a decision in my life.  This is a watershed moment, I will probably now be on drugs for the rest of my life.  That is a frightening thought.

 

Why did I decide to start?  Well the symptoms are affecting my wellbeing; I am avoiding situations where I have to write and type and that is stressing me out.  I am a young man and these are going to be the best years of my life.  I want to be as fit as possible to get as much out of those years as possible.  If I need to take medication to achieve that then so be it.  I may be storing up problems for twenty years down the line but we will deal with them at that time.

 

Sunday 25 May 2008

So far so good. I am building up to around 9mg a day, currently I am on a mere 0.5mg a day!  A long way to go.  It is popularly believed that 9mg is the minimum dose to be beneficial, however I have felt an improvement in my wellbeing in the last couple of days, probably due to having made the decision and all the associated angst having evaporated.

 

I have not experienced any side effects yet, at low doses nausea and sudden sleep episodes are the most common.  At higher doses addictions such as gambling or a the desire to have bucket loads of sex are known.  After taking the drugs I sent a text to some of my friends saying “Started drugs 10 mins ago.  Nothing happened yet”.  One of my Parkie pals replied “If no erection in 5 mins phone consultant at home”.  I did laugh.

 

I met another Parkie this week he was diagnosed quite recently.  His symptoms are slowness of movement, most noticeable in his walking.  He has no tremor at all.  It is amazing how two people with the same disease, at a similar stage, can present so differently.

 

The running is going well.  I bought a decent pair of running shoes and they have made a difference to how sore I am the next day.  I have started running with Alan Kennedy, an old Uni pal, once a week.  He is doing the 10k with me 3 weeks tomorrow.  The furthest we have run is about 8k, this Tuesday we are running the 10k course to see how it goes. I need to shift a bit of beef over the next three weeks, I expend a lot of effort carrying a couple of stone I could do without around with me.  I might amputate my wobbly arm.  Two birds, one stone.

 

Monday 2 June 2008

The drugs are going well. I am on 0.75mg per day and this is go up in 0.75mg per day jumps each week up to 3mg per day.  As I am not overly affected by my symptoms I am going to build up more slowly than the drugs company recommend in an effort to reduce the side effects of the drugs.  The feedback I am getting from other ropinirole users is to make the changes slowly.

 

I ran 10K on Tuesday with Alan.  We did it in 62 minutes.  It was fine, I felt as if I could go further.  I was a bit stiff the next day but not bad.  The fundraising plans are coming on, we now have 57 walkers for the West Highland Way and 24 runners in the Great Scottish Run.

 

I took the girls camping this weekend with my pal Matt and his two nippers.  We went up to Loch Lomond, the weather was cracking.  The only sentence of French I remember from my schooldays is “Avez vous une place libre pour une tente?”.  I was hoping to be able to use it but the people who ran the camp site didn’t speak French.  They thought my English was excellent.

 

We were eaten by midgies.  The little gits get everywhere, two days later and I am starting to itch. This is a worry for the Wobbly Williams Walk.  I might wear a bee keepers hat.

 

The girls loved the whole experience.  I woke up about 6am and lay for an hour with my wee girls snuggled into me.  It was a magic moment and brought home to me just how lucky I really am.

 

 

Tuesday 10 June 2008

I “outed” myself yesterday, telling everyone at work of my situation.  As my condition became more widely known there was always a risk that people I work with would find out from another source which isn’t really on.  It is a weight off my mind, everyone knows now and it isn’t an issue.  I also told most of my clients, one of whom recommended colonic irrigation.

 

Still no problems on the drugs, up to 1.5mg per day.  The expected side effects haven’t kicked in yet which is a relief as we are off to New York next week and I don’t fancy puking up off the side of an open top bus.

 

This time last year I would have left for work with no breakfast.  Now I have:

Breakfast (usually cereal or a bagel)

Cup of green tea

Glass of smoothie

Cup of turmeric and milk

Ropinirole tablet

Vitamin tablet

Fish oil tablet

 

I would probably be better off having half-an-hour extra in bed.

 

One of my mates, JK, goes to China quite a lot and gave me a tin of loose green tea, which is much better than the tea bags I have been using.  The tea leaves last most of the day, just keep topping the cup up. The leaves inflate over the course of the day and one of the secretaries thought I had a cup of maggots on my desk!  Maggots!  I have adopted some strange habits lately but maggots?  Colonic irrigation suddenly seemed attractive.

 

I spoke to an old friend, Joseph Walker-Cousins, this week for the first time in a year or two.  He expressed his concern with his usual classic understatement: “Bryn old fellow, good to speak to you, I believe you have come down with something”.  Class act.

 

Monday 16 June 2008

About five minutes after posting my last blog entry I received an email from one of my clients, it was so supportive it reduced me to tears, the first of many times I had tears in my eyes this week and there hasn’t been an onion in sight.

 

The support my colleagues have shown is also breathtaking.  Since going public last Monday, twenty of them have signed up to travel to Kinlochleven for the last day of the Walk in September.  We now have 100 fundraisers taking part in events this year.  It has gone well beyond my expectations.  That made me blub too.

 

I suffered further emotional trauma yesterday (maybe that is an exaggeration) as it was the Glasgow 10K for men, the first distance race I have run in my puff.  I ran with Alan Kennedy and struggled my way round as I had the lergie (I think it was full blown flu but Vicky said it was man-monia, not sure what that is but it sounds serious)  Anyway I finished in 57 minutes and 53 seconds. In the history of athletic prowess, it is no big deal, but for a dedicated couch potato like me, it felt pretty good. If my neurologist had told me on the day I was diagnosed that I would be running a 10k today I would have cried with relief.

 

The event was very emotional and I was a bit overwhelmed by it all.  I snivelled as I crossed the start line, at various times during the race and again when I hugged my family at the end.    My wee girls were there at the start and finish, although Ella was spectacularly unimpressed that i came 1834th. The gods were against me! I nearly broke a tooth trying to get in to a bottle of Gatorade half way round, not realising it was a twist top rather than a pull top. We spent the afternoon at a celebratory barbecue at a friend’s house and convinced all 9 (drunk) adults there to run the Great Scottish Run (10k) in September.  They might not remember this morning but I do.

 

Vic and I are off to New York on Wednesday for five days.  I am so looking forward to it.  We can’t really afford to go at the moment but it was booked shortly after diagnosis when I thought I would have to cram as much as possible in to the next twelve months before the Parkinson’s disease got the better of me.  I was talking to one of my Parkie chums about this urge to do things now and he said “Being diagnosed with Young Onset Parkinson’s Disease is like going to a party at 6pm, expecting it to end at midnight.  However at 7.30 you are told the party is going to end at 9, so you start drinking as quickly as you can.” Very true.

 

I haven’t had a week as emotional as this since the two or three weeks after diagnosis, the difference between now and then is the emotions are all positive.  I don’t know what the future holds for me but, for now, I am enjoying the journey.

 

Friday 27 June 2008

New York was great.  Ran around doing all the sites.  I didn’t get enough sleep and I felt my tremor more, no surprise there!  Relaxing and sleep are powerful tools in dealing with this condition, and relaxing and sleeping are not part of a trip to NYC!

 

Michael J Fox has a high profile in New York.  I saw adverts for Team Fox, appealing for runners, walkers etc to raise money for Parkinson’s research, in Yankee stadium and in the lift in the Empire State Building.  We need a celebrity with Parkinson’s in the UK.  There must be one out there.

 

I was interviewed for an article in one of the Scottish newspapers on Wednesday.  Firstly I spent half an hour with the photographer.  I had to put my running kit on much to the amusement of my colleagues.  I then went for a coffee with the journalist and told my story and described my frustrations.  The Wobbly Williams thing is all about increasing awareness and this is a big break.

 

Before the interview I had a chat with Tom Isaacs who was diagnosed at 27 and is now 40.  He has built a team who have raised millions for their Cure Parkinson’s Trust.  He is a very interesting guy, we had a surprising amount in common, right down to being married to weegies*.

 

We have some more press coverage starting this Monday in Glasgow’s Evening Times.  Mel Hargreaves, one of the girls running the half marathon at the Great Scottish Run for Wobbly Williams Fundraising, is writing a weekly training diary which will appear every Monday night starting 30 June.  It is amazing how this is taking off.

 

 

*Glaswegians

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