2009 January – June
Monday 5 January 2009
I feel dog rough. I got back from a weekend at the darts. Whoever thought it would be a good idea to put this tournament two days after New Year is a teetotaller. It is just an extension of the festive fortnight. It was my first trip to Lakeside and it didn’t disappoint. The atmosphere is electric, the food is fried and the beer is lager. And there is darts to watch! Does it get any better? Well it could, they could give you a commode to sit on and then you could stay completely stationary for eight hours. As always Richard and Alan made me laugh like a drain, it was a great weekend.
I overdid it on Saturday and Sunday was a long day but was still a laugh. The people who go are a great laugh, made some terrific friends. The men aren’t as fat as they appear on TV and the women aren’t as rough. Some of them even have their own teeth.
The highlight of the weekend was bumping into Bobby George as we left the floating curry house (I think it was floating, it felt like it was floating). There are photographs here. After meeting him I was inspired to show of my left handed darts skills. After a day on the beer the walls were wishing I had just gone to bed.
I am looking forward to a period of abstinence, settling back into a routine. I see my neurologist this month and I will be looking for a few answers regarding my medication. I don’t feel wildly different to how I did before I became chemically enhanced. But then when I started I didn’t ask the question “will the drugs make me feel normal?”
Tuesday 12 January 2009
Perhaps sharing a room at the darts with a guy who was loaded with the cold wasn’t the wisest thing I could have done. I was infected! I have had the cold all week and it wasn’t pleasant. My teeth felt like they were loose in their sockets. My head felt like a golf ball had been inserted under the skin, just above the bridge of my nose. My eyes went all slitty to keep the light out, bright lights causing the golf ball to mutate into a tennis ball. It was hard but I made it through.
Colds, flu, pneumonia are to be avoided if you have Parkinson’s disease (he said knowledgeably), more so than for the average person with a full compliment of brain cells. As such I am entitled to a free flu jab (in case you are wondering a free flu jab does not compensate for having PD). However I don’t know why I have to avoid the lergie. When I was first diagnosed I wanted to find out everything about PD, I was a sponge absorbing information on this illness. As a result, I went through a spell of knowing too much, too soon and was condemning myself to some of the more unpleasant possibilities for a Parkie (like I might start believing people are interested in reading what I have been doing over the last week and will log on to a website to read it! Crazy!). I had a reaction to this information overload and went through a few weeks of trying to avoid any contact with Parkie related info at all. It was during this period I was warned about catching flu-type bugs. I didn’t ask why and ever since the first tickle in my throat fills me with dread. I embrace my children and say my final goodbyes before going to bed muttering something like “I may be gone sometime” (its been a quiet week so I may be over-egging the cake a bit here).
I had a chat with Cliff Williams this week. Cliff tells the story of his deep brain stimulation operation on the M.A.S.H. page. We discussed the operation and the remarkable results – he is now medication free and his tremor has gone. It is an amazing operation and could see him medication free for the next 20 years! I will have some of that please! Seriously I am going to look into it. Cliff had to push hard to get it and I want to know why it is not routine for handsome youngsters like me and Cliff. It seems to be a last resort thing. Probably something to do with having you brain opened up and attacked with metal probes!
Monday 19 Jan. 09
I have always struggled with the blues in January and this January has been no exception. It started with worries about progression of the disease, primarily because I can feel stiffness building up in my right leg. It is like walking around with a weight strapped to my ankle. One worry sets off a chain of other worries. I then spend a few days feeling out of control as I struggle to get some perspective on matters. There is a local children’s entertainer (Pirate Pete) who does a plate spinning routine and when things are bad I feel like all the plates are stopping at the same time and I am running around trying to stop them toppling off the sticks. When one goes I try to get it going again only for another to fall off. Even when things are good I have to concentrate on the plates all the time to keep everything running smoothly. It is very wearing. Sometimes I have had enough of Parkinson’s.
Part of the problem is the medication. It isn’t really doing it for me. I feel I wasted my last neuro appointment by not asking questions and this time (next Tuesday) I am in a more determined frame of mind to get to the bottom of what the medication can do for me or should be doing for me.
I discovered this week that running shorts are meant for running and not swimming. Both running and swimming shorts have a liner in them to keep your bits contained and stop them flapping about as you run or swim. I discovered this week, however, that the liner in my running shorts does not allow air to pass through (unlike the mesh liner in my swimming shorts). The problem this causes is that when I jumped in the local pool at the weekend, the air trapped between the shorts and the liner stayed trapped and didn’t escape between my skin and the waistband as I expected. An inflated ring materialised around my waist, gradually pulling my shorts upwards, towards the surface. A sensation not unlike a wedgie (as an aside the wedgie entry on Wikipedia is a classic). http://en.wikipedia.org/wiki/Wedgie. Ella thought it was hilarious, especially when I managed to release the air (by lying back and lifting a leg) giving the impression I had discharged a prodigious volume of wind. Being the sort of person who laughs at this sort of thing, I laughed too. There were others in the pool who didn’t.
Sunday 25 Jan. 09
I have had a great week. The plates are spinning, the late afternoons are getting noticeably lighter and I am feeling in control again. Compared to last week, I am in a much better frame of mind, it is odd how a few good days can lift my mood.
Many things have contributed to my better mood; an excellent Burns supper on Thursday, Rebecca’s Birthday party and the longest run I have had in a month on Saturday, and a day out with the girls (handling cockroaches amongst other things) on Sunday. In addition I have got a lot of outstanding work off my desk this week as well, you don’t realise how much these things are actually weighing on your mind until you clear them.
I have also been preparing for my trip to the neurologist this Tuesday. I will be looking for information concerning medication. Regarding ropinirole, the medication I am on, I don’t know how good it can be. Is the dose I am on fine and my expectations are too high or should I be on a higher dose?
I will also be wanting to discuss the medication I hope to add, rasagiline. Rasagiline is the allegedly neuroprotective drug which is not on the list of drugs which can be prescribed in Scotland. The reason it is not approved is because it has only been assessed for symptom control (not its neuroprotective properties) and rasagiline is no better at controlling symptoms than another, much cheaper drug, selegiline, which is approved. For a medic to prescribe it there has to be exceptional circumstances. The evidence of rasagiline’s neuroprotective properties is sketchy but there is evidence. My view is I am 37, have two young kids and if there is any possibility that rasagiline can delay the day all the plates stop spinning then there is a case for prescribing it.
If I lived in Newcastle I would be on rasagiline.
Tuesday 27 Jan. 09
I was apprehensive about going for my neurologist appointment. I woke at 2.40am and didn’t get back to sleep. In the end my worries were unfounded, the appointment went well.
First up I saw the Movement Disorder Nurse, Angela. She quizzed me on my symptoms and wiggled my limbs. She detected stiffness in my right arm only and that was mild. Viagra gags sprang to mind. It seems that I am not progressing as fast as I feared.
We talked widely about drugs and the options available to me. He felt I was optimistic thinking the drugs should make me symptom free. The decision is mine and I can either increase my ropinirole agonist and/or start selegiline. The neurologist explained he can only prescribe rasagiline if there is a medical case, for example if I suffered side effects with selegiline. He doesn’t believe the inhibitors (selegiline and rasagiline) are neuroprotective but believes they help stabilize the Parkie in the early days.
I am undecided what to do so I shall go through my standard routine of agonising over the decision until I am so pissed off that I start selegiline. I guess that will be in about three weeks.
I am pretty happy with the meeting, the consultant is very approachable and sympathetic. A good combination!
Monday 2 February 2009
I took the plunge and increased my medication this week to 12mg of the dopamine agonist, ropinirole. Agonists make the remaining dopamine producing cells work a bit harder. I feel different, I feel better. I can’t quite put my finger on why. My typing has improved marginally, as has my writing but not enough to improve my mood as much as the increase has. The rest of my body feels looser, I feel more “fluid”. I am using my right arm more and it feels great. Most of the symptoms are still there; my arm still doesn’t swing, the tremor is still there but I feel much better, as if the drugs, at last, are having an effect.
The most noticeable positive effect was in my running on Saturday. It was a 7km loop that I do near my house. My bendy foot didn’t kick in until the end, rather than after about the normal 2km. As I was running with Fast Bob, my time was always going to be faster but I didn’t expect to finish in 38 mins when my previous best was 43 mins. I would have been delighted had I not been trying to stave off cardiac arrest.
The downside to upping the drugs is feeling rough for about an hour after each dose. Nausea, foggy head, raging thirst and feeling sleepy, a peculiar combination. As time passes they become less and will disappear in a few weeks.
As I have upped my agonist I will delay starting the inhibitor, selegiline. I don’t want to throw to my changes into the mix at once. Take Your Time is my motto. Quite a good one for a Parkie.
I was at the pub on Friday (I know, an absolute shocker, right up there with my co-athlete Michael Phelps smoking a cannabis pipe, I can only apologies to my friends and family) and the guy next to me was tapping his foot on the bench we were sitting on. It was so irritating, the vibration went right through me and after a while I was thinking it was me. It was all I could do not to yell at the guy to sit still. But that would have been irrational.
I am driving to Aberdeen on Tuesday and the snow might make it a long journey. The news has been full of stories today of the country coming to a standstill under the weight of snow. I laughed when someone phoned in to radio FiveLive and said if the Germans had dumped snow on London rather than bombs the result might have been different.
Monday 9 February 2009
Two weeks after increasing the medication the improvements seems less dramatic, sometimes I think there is no improvement at all! It can be quite depressing, all I want is some evidence that my decision to start medication nine months ago was a sensible one. Maybe the improvement is there and I don’t notice it because I am comparing my condition to that of a normal person rather than the person I was when I was taking the lower level of drugs. I did another run on Sunday and it was the fastest I had ever run over 5K. That must surely be a sign that they are having some effect.
A week after everyone else, the snow arrived in Glasgow last night. I was making a snowman at 7am on Monday morning and again when I got home from work on Monday evening. It is the first time Rebecca has really experienced snow and it was great fun seeing snow through her eyes. All week the news has been full of people complaining about the snow. I treat it the same way that I treat my Parkinson’s; it is a pain in the ass, but it is there so I might as well try and enjoy it.
My big brother is working on a new version of the web site, it looks pretty cool and will have details of all the events we are organising or participating in over 2009. The list of events is quite daunting but that’s how it all felt this time last year!
Tuesday 17 Feb. 09
Symptom control is still my burning issue! I spent the weekend just past in Amsterdam with Vicky (my wife not the Voluptuous one) and her family. It was great being back in a city I hadn’t visited since I was a student in The Netherlands 15 years ago. The weekend was a good laugh but it brought home once more that not enough sleep and too much indulgence come hand-in-hand with a shakier arm and less co-operative limbs.
I went out for a run on Sunday morning along the streets and canals, and the lack of hills make it a great place to run about. I ran 6k at my usual pace and the only time my heart rate went up was when I nearly got flattened by a silent cyclist. Trams, cars and bikes all sharing the same strip of tarmac makes it an extremely hazardous place to be a pedestrian!
The audience for this website continues to grow unabated. We are now averaging 4000 hits per week. Some people have asked me why we have included a Jokes page; the thinking is that we can use it to get non-Parkies through the door and, with luck, they will dip into other parts of the site. This way we can raise awareness. The secondary reason is I have a right good laugh finding jokes!
In addition to the Jokes page I email out a joke every other Friday (sign up here) to the 500 people who have donated through last year’s JustGiving page. Obviously we are pretty careful about what we send out and was shocked to receive two emails from the same person describing the joke in the first as “plain offensive” and in the second as “deeply offensive”. I was quite shaken (in a non-wobbly sense) by the episode, primarily because I have no idea what is offensive about the joke. The complaint made me doubt whether it was wise sending jokes to people’s email but we as have had only one complaint from in excess of two thousand emails it will go on for a while longer. Bet you are dying to know what the joke is now!
Sunday 22 February 09
One of my mates is showing symptoms of a brain disorder like MS or PD. He is being diagnosed through the NHS and it is taking an age. I was diagnosed privately (I have private cover through my job). From seeing the consultant to going head first into the MRI tunnel was less than five days. My pal was referred for an MRI three weeks ago and hasn’t even got a date yet. It is barbaric. If the MRI is clear then MS or a tumour are ruled out, and he will have a 4 month wait for the Parkinson’s DAT-scan. Whilst it is a very difficult time for him, he continues to laugh very hard indeed about life.
His “preference” of neurological disorder from the Unholy Trinity of brain tumour, MS and Parkinson’s is MS, as he knows a bit about it and better the devil you know. I went through the same dilemma when I was diagnosed. I was discussing the dilemma with Jen at the weekend and she said her preference would be for Parkinson’s and I replied “me too” and then I remembered I already did. It was great, just for a second I forgot! We did laugh.
On the subject of laughing, we were at a friend’s house for dinner on Saturday night and he told a story about one of his chums who is a doctor. This doctor went to see a patient as part of a home assessment. They were sitting in the lounge chatting when the patient’s dog came in to the room. The dog had a good sniff around and then did a poo on the living room carpet before ambling out. The doctor was initially shocked and then amazed that the patient made no move to clean it up. The assessment went on for another twenty minutes or so with nothing being said about the poo in the middle of the room or its associated odour. Once the doctor had finished the patient showed the him out. As he walked down the path, the patient shouted after him “are you not taking your dog?”
“He isn’t my dog” replied the doctor.
“Well he followed you in to the house when I opened the door” said the patient.
Two days later I am still giggling at the thought of both men being under the impression that the other’s dog had crapped on the carpet.
The first full week of the new, improved website saw 10,078 hits, 3600 more than our previous best week and 6000 more than our best weekly average. Vicki’s blog has had a positive reaction, please feedback your thoughts, they really are helpful.
Finally, I have had a good symptoms week (good for me, not the symptoms). There are times, like the dinner on Saturday night, when I feel relatively normal. When that happens I just switch off the world me around and enjoy the moment, just concentrating on me. The other people round the table must have thought I was terribly rude. However given that I was the only person to turn up in a T-shirt and spent the evening drinking beer out of the bottle rather than a glass, they had probably reached that conclusion anyway!
Monday 2 March 2009
I went back to Belfast this weekend for a warm up to a school reunion later this year. It was a cracking night. I flew in at 4.30 on Saturday afternoon and went straight to the pub. There was about 10 of my former classmates there already, some of whom I hadn’t seen for twenty years. I was apprehensive about how they would react.
Rod was one of the people I hadn’t seen for twenty years. When I was sixteen I moved schools to Belfast High and Rod was the first person who spoke to me. The second person was Eddie who whispered “watch him, he’s gay”. Rod overheard this and started camping it up when I was around and winking at me at every opportunity. Anyway as soon I arrived he leaped out of his chair and made me sit down in case my legs gave way.
I should of guessed that there would be no beating about the bush. Steven launched straight in with talking about the website which was a relief and broke the ice. I was sitting next to Ronnie who didn’t know. He listened for a while and then leaned across and asked what problem was, I explained, and he said “I thought that was something only old people got.” He summed up in nine words why raising awareness of this disease is so important.
As the evening progressed the alcohol kicked in and Neville decided he was doing the whole of the 2nd Wobbly Walk and started volunteering others. I was very touched but will give him the opportunity to back out!
I was in bed by 3.30am Sunday morning and on a flight home less than six hours later.
Sunday was a long day.
Tuesday 10 March 09
Tom’s recent blog entry has filled me with hope for the future. He predicts that within 3 years someone will be regenerating brain cells and their disease will be in decline. Maybe there is a way out of this rather difficult situation after all. It is hard not to get excited about the prospect of feeling symptoms decline rather than advance. I dare not get my hopes up. I would settle for feeling like I do now for the rest of my days, even that would be a miracle. When I first met Tom he said “you have contracted Parkinson’s at exactly the right time”. Tom, I hope you are right.
Tom’s blog coincides with excellent news on stem cells, there has been a story describing advances everyday over the last week. All the breakthrough stories are however eclipsed by the news that President Obama has lifted the bar on US federal funding for embryonic stem cell research. There was an article in The Scotsman (an amusing Edinburgh-based paper which believes there are more important things going on the world of sport than the Old Firm! Hilarious! And even more hilariously they think it might be rugby!) which estimated it would be 20 years before stem cell research is delivering help to Parkies. President Obama’s actions will bring that date forward.
Gareth has unearthed a guide to running which suggests my training is all wrong. I am running to hard when I go out (note I said “hard” not “fast”!). It appears that such frenzied activity does little to improve fitness or weight loss. To be fair given I was visiting friends all weekend and was nearly sick on the way home from over-eating, I am not doing much to help my weight loss myself! Anyway, to get back to the running, apparently I need to be running slow enough that I can hold a conversation. For me, that is slow. I went for a run on Saturday to practice this method of running and, dare I say it, it was almost enjoyable. Apart from people looking at me wondering “why is that guy talking to himself?”.
I had a run in with Avis Car Hire this week. I had booked a car for 3 days at a special online rate and had the temerity to take it back a day early! This heinous crime was punished by charging me the full daily rate for two days because I was in breach of my agreement with Avis. This is double the cost of the 3 day online rate. Arguments like “I am doing you a favour, you can rent out the car again” fell on deaf ears. Similarly when I said I would take the car away and come back tomorrow the helpful Avis assistant replied it was too late because she had already booked it in. Her mouth said “you should have read the small print”. Her eyes said “nae luck”. She reversed the charge eventually but I am sure she still thinks I was in breach of agreement and should have suffered the consequences.
I am 38 today. Still feel that is too young to have this disease. I will raise a glass today to feeling the symptoms decline by the time I am 41. Cheers!
Tuesday 17 March 2009
Its been a tiring week. A combination of my birthday and friends visiting for the rugby in Edinburgh has left me feeling pretty run down and my symptoms abound. The current focus is on my legs, any sign of stiffness of tremor opens a little chink in my armour. Unfortunately once the lid comes off one pot of darkness, the lids start flying off all the pots releasing the little demons contained within and it is fight to get the wee buggers back inside. However experience tells me a few good nights sleep and the passage of time will see my spirits lift again.
Plans for the Wobbly Walk 2009 are coming on well. We have over 40 walkers doing at least part of the way and 18 looking likely they will do the whole thing. This far out from the event itself this is a good sign. Most of the walkers who did the whole of the West Highland Way are taking part again with a few newcomers. Once again the people who have grabbed this and got on board have surprised me. People are amazing.
Speaking of amazing people, the team of students who are organising Wobbly Williams Wednesday next week (25 March) have really gone to town to make the event a success. They have had 500 t-shirts printed, produced countless flyers and been in contact with the media. “Been in contact with the media” included ambushing Lorraine Kelly at a book signing and trying to get me on her show! This could be terrifying.
One terrifying event in my life, the New York City marathon has evaporated as we didn’t get places. I am disappointed but also relieved. The first 10K of 2009 is this weekend and I have signed up for 3 half marathons in six weeks from 6 September! Why do I put myself through this?
Tuesday 31 March 2009
I’ve taken a break from blogging for the last two weeks because of my low mood. Sometimes I just want to escape and not talk about it. So that’s what I did.
I ran my first 10K of the year during my sabbatical and it was no fun. Scraped in under the hour but my GPS told me it was only 9.5K (no wonder it is described as Scotland’s fastest 10K!). It was the first race I had started on my own although I was adopted by a group of lady runners who dragged me through the last couple of miles. I managed to hold my own in a discussion about the merits of running tights (I was trying to convince them I was a real man).
Wobbly Wednesday was a great day. I am still amazed at the generosity of people to give up their time for The Cause and the response of the SIFE students was even more remarkable given that there are many sexier causes and we have so little in common. I spent most of last week deciphering text messages from the SIFE team leader, Sara Hunter, which were written in a strange vowel free language. She must get some cracking scores at Scrabble. They day before Wobbly Wednesday I found out she was diabetic. She has her own cause yet she gives her time to support mine. Amazing.
As part of Wobbly Wednesday I was interviewed on a local radio station. Just like the people at Scottish Television, the radio presenter put me at ease and it all went swimmingly. Except for my lewd comment about Catriona McKay, the Scottish harpist. The interview lasted about 40 minutes and I will put it up on YouTube shortly. Contain your excitement please.
My friend who is going through diagnosis of his tremor saw a neurologist last week. They were discussing the possible causes such as a brain tumour or MS when my friend asked “What about Parkinson’s?” to which the neuro replied “You are much to young to have Parkinson’s”. He is a year older than me. My friend nearly fell of his chair.
I am signing up for a genetic mapping experiment being run by a company called 23 And Me. 23 And Me was founded by Sergey Brin, the founder of Google. When he set the company up, Sergey mapped his own genetic code and discovered he has a 50-50 chance of developing Parkinson’s. Sergey is sponsoring a project to get as many Parkies mapped as possible to see what common links there are between us. He’s called Brin, I’m called Bryn. Could that be it? Anyway I’ve signed up for a bit of mapping and will hopefully be told something positive like why this has happened and not be told something disastrous like it is inevitable that hairs will start growing out of the tip of my nose when I turn 46.
Tuesday 7 April 2009
I’ve taken my life in my hands. Well this is an exaggeration. I have adjusted my medication without discussing it first with a medical boffin. Over the last few weeks I have felt shit. Really crap. My legs have ached, I have felt sluggish and fed up. After each dose I felt sick and tired. I stopped running to see if that helped, but there was no improvement.
So I have reduced my dose back to 9mg a day from 12mg. I have felt relatively normal for short periods on 12mg, a few hours at a time, but I am not convinced it was the effect of the drugs. Sometimes I think I wish myself to feel better. Every time I have upped my dose I have been able to pinpoint improvements in specific areas, but overall have the drugs haven’t masked the condition as I have hoped.
I have no concrete evidence that the drugs are having any effect or at least no prolonged effect. For example, there has been zero improvement in my writing and typing, which was my original justification for starting the medication.
How is 9mg? Well, I don’t feel any worse and I don’t feel as nauseous nor as sleepy after taking a dose. But time will tell.
Tuesday 14 March 2009
I reduced my dose to 9mg the weekend before Easter. By Good Friday I was in severe pain. The pain started in my lower back and by Easter Sunday the pain was down my legs.
I am not sure the pain is Parkinson’s related. At first I thought it was a back strain possibly caused by going out for my first run in a fortnight. It was a run slotted in during my lunch break and I didn’t stretch as I normally would. However, it is now Tuesday and it doesn’t feel much better.
I now have a dilemma. If it is parkie pain then presumably the drugs have been masking it at 12mg (meaning the drugs do in fact work) and I should be able to go back to relative normality by upping the dose. Normally I would probably put up with the pain until I am sure it is a Parkinson’s symptom, however I am Groomsman at a wedding on Friday and I really don’t want to feel like this on the day.
Maybe I’ve left it too late to go back to 12mg to see an improvement by Friday. It took six days for the pain to kick in after dropping my dose so will it take six days for the pain to subside?
These thoughts have been rampaging through my mind for the last 48 hours and I decided to go and see a GP on Tuesday. She poked, prodded and manipulated but came to no firm conclusions. Things were ruled out like sciatica and PD. She knew of Parkinson’s disease and she felt the back pain and the condition were unrelated. This was a relief. A thought occurred to Dad (his second this year) that it might be due to sleeping in a different bed over the weekend; we went to Ireland on Wedensday and the pain started Thursday evening. Maybe it is that.
So, the combination of the opinion of a GP I had never met before and the clutchable straw offered by my Dad that it might be bed related has given me some confidence that it isn’t Parkinson’s disease its just a sore back so I have stayed at 9mg.
Tuesday 21 April 2009
I am still in a bit of pain. It was fine for the wedding, I discovered that walking eases the pain so I enjoyed an excellent round of golf with the Groom on the day of the wedding.
The wedding was great. I performed my sole duty of handing the rings over without mishap. They were fairly warm and sweaty when I delivered them due to the tight grip I had on them, but better that than being on the floor.
Two nights before the wedding I had the pleasure of applying fake tan to Vicky’s back. No man should ever be asked to do that. For a start the gloves which are provided are tiny, never intended for the male hand. It is vile stuff. Vicky was paranoid I would be a bit haphazard in my application of the goo and leave her looking a bit streaky. I was tempted to write the website address on her back and use her as a human billboard.
I hobbled around a 10K on Arran on Sunday. It was my first trip to Arran and it was beautiful. My back was sore and I had only run once in four weeks so I wasn’t expecting much. There were five Wobbly Williams Runners; Karen, Adele, Lesley, Andrew and me. I ran with Lesley, who had come to watch and only decided to run 5 mins before the start. She had no running kit and wore her daughters’ leggings. This is not a joke. Her daughter is 4. They were a bit neat as you can imagine (see Photographs page). Anyway she finished her first ever 10K in 62 minutes and I had the dubious honour of being Last Male.
The highlight of the week was receiving a cheque for £1000 to go towards research into a cure from Lenzie Flower Club. I said a few words to the assembled ladies, the majority of whom were retired and one lady in particular talked most of the time I was talking because her hearing aid was defective. Once again I thought how my life has changed!
As for the drugs, and assuming the back pain is unrelated to the Parkinson’s, I am doing better at 9mg than I was at 12mg. It is a peculiar state of affairs.
Tuesday 28 April 2009
I have fallen for it again. I watched the London Marathon, saw Kevin from Boyzone blubbing at the finish and decided I have to have a crack at it. Karen, Adele and I made a pact after finishing the Balfron 10K to go for it and The Cure Parkinson’s Trust have given us places if we have no joy in the ballot. We will hopefully be joined by Bob and a few others.
I sent a text out to some of my friends when I heard the news and the replies varied between fantastic and you are mad. Tony’s reply had me laughing all day, “You p****!! In fact dress as a giant p**** so I can laugh at your collapse around the 10 mile mark”. Some people pay money to get that sort of abuse.
The launch of the human trials of Cogane is good news. I am very optomistic that this drug can make a difference. Ever since I read “Monkeys In The Middle” I have been very much of the view that there is a strong possibility that GDNF can give us Parkies a better life. This first trial is to check that the drug can be tolerated by humans (wobbly monkeys get along fine with it), and if successful will be followed by a trial which will measure the drug’s therapeutic effects.
The PDS used Parkinson’s Awareness Week to promote brain donation for research as another weapon in the fight against PD. I think this is a great idea and have ordered my information pack (on brain donation not Lobotomy For Dummies). Some high profile figures like Jeremy Paxman and John Stapleton have signed up and I set my mind to thinking who else could we try and persuade? In a flash of inspiration I remembered that you could set up a petition on the Ten Downing Street website asking the Prime Minister to do something. I reckoned that, following the Budget, an awful lot of people would sign a petition which said
We the undersigned petition the Prime Minister to: ‘donate his brain to Parkinson’s research’
Alas it wasn’t to be. Even though I didn’t add “sooner rather than later” the civil service decided the petition wasn’t appropriate, to quote the email from No. 10:
Your petition was classed as being in the following categories: Issues for which an e-petition is not the appropriate channel.
My back is improving slowly and I am sticking at 9mg for a while longer.
Thursday 7 May 2009
Before this week the only Dummies book I had ever read was “Parkinson’s Disease for Dummies”. I read it less than a week after diagnosis, when I was at my most scared and most fragile. This last week I read “Marathon Training for Dummies”. Marathon Training for Dummies is by far the more frightening book. When I picked it up I was a happy, carefree sort of guy and now, once more, I am scared and fragile!! My life for the sixteen weeks from 3 January until 25 April 2010 will involve running five to six days a week and eating proper food. Beer and curry does not count as proper food (I am seeking a second opinion).
In the last week I have run two 10K races. The Great Edinburgh Run on Sunday and The Troon 10K last night. Edinburgh is a hilly place. You don’t appreciate how hilly somewhere is until you try and run around it. Edinburgh was 10,000 runners, fantastic weather and a great experience. Troon on the other hand was wild. The course is flat, the route takes you along the seafront and around the edge of the golf courses. Oh the irony! I used to play a round on a golf course and now I am reduced to running around it. Where did it all go wrong?? Anyway, the weather was wild. The wind was bad enough for the ferry to Ireland to be cancelled but the Troon Tortoises deemed it OK for vulnerable people of extremely large surface area like me to run a 10K!
I went back to see Helen, the physio that helped me so much when I was first diagnosed. I wanted to see if she could do anything with my sore back. Her face lit up when she saw me. At first I thought it was because she was pleased to see me. An hour later I realised it was because she remembered that I had a high pain threshold and she could give me a good battering for an hour. She worked on loosening up tissue, particularly in my buttocks. What a difference! I feel positively gazelle like now.
I am getting excited about my next long distance walk in a couple of weeks. Ten of us are walking the Great Glen Way from Fort William to Inverness. If that wasn’t difficult enough, four of us are also doing the last two days of the West Highland Way from Kingshouse to Fort William as a wee taster. Those two days were probably the most dramatic of the WHW but we didn’t see a great deal last September due to the shocking weather. Looking forward to it this time round.
Saturday 16 May 2009
Life is very normal at the moment. My symptoms are fairly static, my back pain has eased off and I am quite happy sticking at 9mg for the time being.
Today I am spending the afternoon with Eli Pollard. Eli is the co-ordinator of the World Parkinson Congress, a four yearly event which is coming Glasgow in the autumn of 2010. The Congress is intended to bring doctors, academics, patients and carers together to share knowledge and advance treatments for Parkinson’s. I am on a few of the organising committees for the WPC and feel completely out of my depth. Being so new to this Parkie life I sit through the conference calls we have and say nothing. I have nothing to add. I know nothing of the strange new worlds of patient advocacy (I don’t even know what it means), clinical standards or dealing with advanced Parkinson’s. It is very frustrating because I want to get involved but to do so will expose me to the difficulties which probably lie ahead.
I am now the proud daddy of two guinea pigs. The girls wanted a pet (my wobbly arm has lost its entertainment value, it needs to learn a new trick) and Millie and Poppy fitted the bill. Knowing how indecisive the girls are we started the naming process well in advance of the day we bought them. Sadly the two rodents the girls set their hearts on were boys. Boy guinea pigs called Millie and Poppy. Fear of them developing psychological issues has lead to much debate over alternative names. They are currently called Billy and Patch. Billy is named after a toy dog I was given for my first birthday. As I lived in Ulster and the dog was orange, Billy was the only suitable name.
Sunday 31 May 2009
I haven’t typed a blog in a while. There has been a lot going on and I just haven’t had the time. But now I do. It is Sunday morning, I am sitting on the beach in Elie and the weather is glorious! We are all on the beach about to be “entertained” by The Ship Inn playing the Grange at cricket on the beach. The tide is out, the sand has been rolled and a lot of fat blokes dressed in white are warming up. I hope St John’s Ambulance is near by.
The walk up the Great Glen was good fun but I had to admit defeat on the fourth day due to blisters. The first two days were terrific, we covered the last 25 miles of the West Highland Way from Kingshouse to Fort William in marginally better weather than when we did it last September. The views are breathtaking. There was four of us for the first two days and six more joined us in Fort William. We got straight back in to singing badly to George and Tony on the guitars.
Day three was the killer as far as my feet were concerned, 23 miles to South Laggan on roads or towpaths. We didn’t take a packed lunch as there was a wee town marked on the map after 10 miles. Alas when we got there it was just a couple of houses and a café which had been shut for two years. The meal that night was well received!
Day four was painful. A few of us were in the same boat and when I got to Fort Augustus I took one look at my feet and decided that enjoying the view from a bus would be the best option for the last two days. Four of the group carried on and five of us went to the pub and enjoyed/endured (depending on your persuasion) the end of the Scottish football season. We finished up on Sunday night with a party at Alan and Barbara Kennedy’s house, Geo and Tony had the guitars out and everyone got as full as an MPs expenses claim. It was a great week and I’m glad it was something normal that forced me to give up, not Parkinson’s
I ran the Clydebank 10K on Thursday night with Karen. I really paid for not having run for a fortnight, I am still in pain. It was my sixth 10K of the summer only four to go to hit our target of ten.
Things have been getting on top of me this week. Work is busy and I am knackered when I get home. The organising of the various wobbly events and running the website becomes a struggle and as a result there is now a backlog of things to do compounding the problem! This happened last year and I said it wouldn’t happen again! Oh well maybe next year!
Saturday 13 June 2009
I feel fat. I have only run once in four weeks and lack a bit of motivation to do anything. Life is a bit topsy turvey at the moment with work, the kid’s abundant school activities and beer to drink. It is hard to get into a routine, or at least a healthy one. I could do with being out running three times a week and at the gym a couple of times doing pilates and weights. But there just isn’t time!
This year’s fundraising is going well. The company I work for, Marks & Clerk, have entered a team in a London to Paris bike ride. 450km in four days! The plan is to raise 7k for the Cure Parkinson’s Trust. The team is led by Keith Hodkinson who is Chairman of the governing board of M&C. It is a great effort. If you want to donate you can do so here.
Another great effort is being made by wife’s cousin Russell and his pal Chris. They are joining the PDS Trek Across The Sahara in November. Seen one sand dune seen them all I say. Fair play to them, 150 miles in flip flops is also a great effort. You can donate here.
A few months ago I wrote that one of my pals had developed symptoms. Since then he has been pissed about royally. A doctor thought it was MS, the first neuro he saw reckoned it was PD. He has been through the mill. On Tuesday I went with him to see a neurologist at the Southern General and watched him go through all the tests I went through with Dr Greene two years ago. It was hard seeing one of my mates go through the same assessment I had gone through. Two years on I know why he was asked to walk along the corridor as the neuro watched. I know why he rotated my mates wrist in its socket. Looking for signs of bad news.
Well the news wasn’t bad. The neuro (who smacked of competence apart from when he mistook me for my pal’s dad!!!) decreed it wasn’t MS and probably wasn’t PD. Their is a history of essential tremor in his family and the neuro’s gut feel was that it was linked to that, albeit a pretty bad version.
We celebrated with a KFC bargain bucket. Feeds a family of four or two fat blokes.
Wednesday 17 June 09
From famine to feast with the running! To get back on track with my goal of running ten 10Ks this summer I ran two at the weekend. The first was the local one around the hills behind Bearsden on Saturday morning. It was a race for athletes not fun runners (What an inaccurate description “fun runner” is, they are words which shouldn’t go together, like Britain’s Got Talent). Just as fear was overtaking me as I stood amongst the legions of Bellahouston Roadrunners and Kirkintilloch Olympians, I spotted Tommy from Greenock, an ex-soldier who dresses up as a clown, does 10Ks carrying a bucket of lollies and collects money for kids charities. “At least I won’t be last” I thought. When the comedy hooter went, all the vest-clad club runners belted off and Tommy and I brought up the rear. It was very hilly but I showed the clown a pair of heels. All went well until 1k from home, when in the distance Coco the Cheat popped out of a side road. I ran the fastest final kilometre of anyone who took part that day to overtake him 100m before the finish. Ella was at the finish and her lips smiled but her eyes said “You nearly got beaten by the geriatric clown you Muppet”.
Sunday was another day; The Vale of Leven 10K. My legs felt like jelly and I waddled round the streets of Balloch. Tommy the charlatan was there taking everyone in with cheeky chappie routine, but I knew the truth.
The ninth 10K is this weekend, the Glasgow Men’s 10K. Last year’s race was the first 10K I took part in and was a defining moment for me. We are having a celebratory barbie for forty friends after this year’s race. I’ll sit on my bum and feel smug, and let the idle non-runners flip the burgers.
Thursday 25 June 2009
After 30 or so years Marks & Clerk (the Patent Attorneys I work for) relocated their Glasgow office this week from a four storey townhouse to a spangly new office block on Bothwell Street, the Aurora Building. It is terrific, we are all on the same floor and there is a shower! I can run into work, get one of my weekly doses of pain out of the way by going somewhere I have to go anyway rather than running a loop and ending up back where I started. How sad am I? I am excited about a shower! Not long ago I would of said “A shower? Why on earth would you put a shower in an office block? Are you expecting The National Union of Mudwrestlers to move in?”. But not anymore!
I planned my first run in to work for Tuesday and I planned it like a military operation; I took work clothes and a wash bag in on Monday, plotted my route and even remembered to put my office swipe card in my running shorts. It was a glorious sunny morning and a great run, pounding along the Kelvin Walkway at 7am, too early for the air rifle snipers, in the overlooking tower blocks, or the Tennents Special brigade, who line the paths on a sunny day, to be up and about. When I got in to the office I showered and came to the conclusion I would have been classed as a French military planner as I had forgotten my belt and deodorant. I spent the day pulling my trousers up and sniffing my armpits. When I did both together I looked dyskenetic.
The Men’s 10K was great fun. I set a target of breaking the hour (I have long since abandoned my target of breaking the hour which I set in the New Year) and fell over the line in 59 mins 44 seconds, two minutes slower than last year. I was pretty pleased. Delighted in fact. When I ran the same race last year I had doubts I would have been capable of running it again this. Maybe I will get round the streets of London next year.
I am less than a week from my next neurologist appointment and I can’t think what to say. I am coping well (now on Requip 12mg) although things are wobblier than I would like. My neuro attended the Cure Parkinson’s day on Cogane and I will be interested to hear the opinion of someone who is more detached from it than Tom Isaacs, my primary source of info on such matters so I will quiz him about that.