McArdle's and me

Back to it

2012-02-06T19:51:00.000-08:00

easy to find the excuse not to but started this week well, am walking to MRT (under/overground) daily and had a good 50 minute treadmill session 5.1kmph 5.4% average incline.

Weight on the other hand is going in the wrong direction......

Finally....

2012-01-29T22:49:00.000-08:00

.... get going with the post Chinese New Year second chance. A reasonably comfortable treadmill session 5.1 kmph ave speed at 5.3% average incline.

This despite unusual right thigh dull pain in muscle core. Not something I recall experiencing before....

5 times this week- hope so!

One of many good things

2012-01-22T19:09:00.000-08:00

about living in Asia is you get two New Years and the chance to kick start twice. So for me back to the gym with renewed vigour after Chinese New Year.

Yesterday spent lovely day with friends on their boat. Always though frought with danger - others swam to sure - I started but as muscles got tight returned to the boat for a dinghy transfer. Swam a little but had to haul myself back onto the back of the boat. Stomach muscles particularly upset with me this morning and for some reason neck. Hey ho- guess I was never made for life at sea.

Live from Haneda airport

2012-01-20T12:44:00.000-08:00

No exercise since Monday in Brunei - the distances one has to travel in Asia mean so much of the day is spent either @ airports, on the way to or from them or on planes and the need to catch up on email or sleep has got in the way. Mind you as airports are generally so big some exercise is possible just getting to and from the gate!!

Weight has also gone in the wrong direction as self imposed alcohol ban has been lifted on a couple of occasions..........

Next week we start again in the year of the Dragon....

A real struggle

2012-01-16T04:55:00.000-08:00

A real struggle

Early session in the gym seemed a good idea after yesterday's success. This morning it proved less so. Even on the walk to the gym my legs were complaining and I needed to stop several times up an incline. In the end asked my colleague to go on ahead of me!

Once on the treadmill it was a similar story. No stopping but very slow. Called it a day after 30mins at average speed of 4.16k and incline of 4.5%

Hoping for better later this week.

Empire Hotel Brunei - great venue for best to date

2012-01-15T02:09:00.000-08:00

After an afternoon nap (much needed!) and a plate of nachos an hour on the treadmill was by far my best since resuming regular gym work. Climbed 331 metres and estimate average incline was over 5.5% with average speed of 5.6k.

Felt good an pleased to say tennis in Doha did not leave me in as bad shape as I expected. A dash across a rugby pitch a daughter's touch event yesterday caused more issues with stomach muscles hurting for a while.

Am though feeling in good shape - weight loss progressing less well......

Homeward bound

2012-01-12T11:39:00.000-08:00

In the airport lounge waiting for a 2am flight home - pleased to say I managed a treadmill session everday but one on this trip with today's 60 minute effort 5.2 k average speed and average incline of 3.9% followed up by an hour of competitive tennis. Luckily I was able to keep going and keep most rallies short - legs heavy now and will no doubt be stiff tomorrow but felt good!!!

a day and a half at home then off again this time Brunei, Singapore, Hong Kong and Tokyo are the destinations - should manage at least 4 sessions next week as with distances in Asia flights take a lot more time out of each day so it will be arrive late and start work early!!!

Update from Dubai airport

2012-01-09T07:16:00.000-08:00

Have managed two straight out of bed straight to the gym mornings - not sure I can keep that up....
Yesterday 50 minutes flat at 5.5k average.

Today back to inclining but the machine was set to a maximum 30min session and did not provide average incline data. Still pleased to have kept up the momentum. Tomorrow face a busy day in Kuwait and an early evening flight to Bahrain - may settle for an evening workout....

Legs feeling better but think key that I don't push too much for speedy results and risk damage. Slow and steady is the way.

Treadmill in the Middle East

2012-01-07T08:37:00.000-08:00

A 7 hour flight to Dubai and rather than channel hop at the hotel went straight to the gym. For once kit that has travelled with me has already been used.

In truth legs felt a little tired today so took it relatively easily with 55 minutes on the falt at an average of 5.2kmph. Thighs and front of right leg both a little painful.

Good though to have a session already done - hope to continue the momentum before starting meetings in the morning - am sure the 4 hour time difference will have me awake early!

A game of two halves & initially sore calves!

2012-01-06T02:33:00.000-08:00

Tough session on the treadmill this afternoon and had I not been diagnosed with McArdle's would have been seriously sheepish and probably given in after 10 minutes.Diagnosis has helped me to understand my limits and to work within them.

End to 7 day juice detox and while coffee in the morning achieved primary objective, (movement if you get my drift) post a lovely dim sum lunch left feeling very foggy.

May have pushed tennis too hard yesterday as first thighs then calves voiced their complaints even at very slow speeds relative to yesterday. As ever listened to my body and took things slowly with sole objective today of completing 50 minutes. Today's unimpressive stats:

Wrote to here in the first 25 minutes of today's session when legs dictated a max speed of 3.5k.

Thereafter found the elusive second wind and got going, also more embarrassingly found Bachelor 12 strangely compelling.

Ended up doing 65 minutes with the second half turning things round nicely:

Overll for the sesson average speed of 5kmph at an incline of 5.4% and nicely dripping, which I always enjoy!!

End the week 3kg lighter and having stuck to exercise regime and easily avoided alcohol. So quite happy with that.

Next week's one night one city tour of the Middle East will challenge progress.

Getting much better already.....at least for today!

2012-01-04T21:36:00.000-08:00

Day 7 of detox programme and feeling great, despite several infractions of the regime. On track though for 3kg weight loss, which would leave 4.5kg to go....

Amazing what can be done in terms of exercise on 2 apples, some pineapple, spinach and lime juiced and blended with a 1/4 avocado and some Spirulina and Wheat Grass powder. (Oops and a coffee today's first infraction)

Managed a late morning 50 minute treadmill session my best yet for this series:
5.5 average kmph 5.4% average incline

Including a couple of minutes jogging at the end. Felt good right from the off today.

I must keep this going!!

Subsequently managed an hour of tennis with 12 year old son. Luckily I can still make him move around the court rather than vice versa. A couple of dashed to the net had my thighs screaming so took extra time collecting balls before the next point!!

slow start

2012-01-03T21:03:00.000-08:00

Hard getting going today. Felt sluggish for 1st five minutes but managed to emerge on other side without pain and finished strongly.
Overall:
5.0 5.8%

Walking to the underground later today legs felt like led and ached while simply strolling - odd this disease......

1st treadmill of 2012

2012-01-02T21:38:00.000-08:00

Back to work and have kept up the late morning treadmill regime and set a benchmark to build from:

50 mins Ave speed 5kmph Average incline 5.6%

On Day 5 of the juice programme and feeling pretty energetic - have cheated a little, but after 2 hours plus in the garden digging and replanting (slow and steady mind) felt I deserved a couple of Quality Street. Would be so much easier were they not in the fridge!!!

2 days to go.......

Next week likely to be challenging on several fronts with first business trip of the New Year to the Middle East - will certainly test my resolve.

Happy New Year

2012-01-01T00:51:00.000-08:00

Exercise for New Year's Eve consisted of a very enjoyable hour cricket net with my son. Think we finished even but I ache more today.

Detox day two saw compliance levels fall as a New Year's Eve Quality Street urge could not be bested. Still no alcohol meant today has been more productive than might otherwise have been the case. 100% detox compliance so far and an hour of digging in the garden for exercise. Need to get back to work and the gym to resume treadmill activity, which is far more McArdle's friendly.

One down

2011-12-29T21:20:00.000-08:00

Well friends BBQ put paid to the end of alcohol with several beers and a few red wines accompanying some excellent food and making for a thoroughly enjoyable evening.

Gym still on trck with another good session (4.9k 5.4% incline)

"Lunchtime" on first day of juice detox and so far totally compliant.....

Happy New Year to all

Day two

2011-12-28T22:57:00.000-08:00

Calves a little stiff from either the treadmill or an overly fast walk to the train station this morning.

Pleased to say though that I managed a 50 minute session and despite starting quite aggressively(3% incline and 3.2k) did so quite comfortably with overall averages of 4.9k and 5% incline.

To give some perspective I looked at my exercise prescription from Dr Slonim back in 2005 (http://mcardlesandme.blogspot.com/2010/04/my-exercise-prescription.html) where average speed was 3.6k and average incline 0.2%. Sometimes even at that level it was hard to get going so glad I have "followed" the regime,albeit not fully, since then. I would emphasise that Dr S prescriptions are tailored carefully for each patient and each of us is different and needs to exercise at a different pace.

Good progress.

Weight loss may be harder so 7lb in 7 days juice detox starts tomorrow. Have no clue whether this is recommended for M people but seems the only way I lose any weight is on such regimes....exercise alone for me simply does not cut it.

Resolutions for the New Year - starting now!

2011-12-28T03:23:00.000-08:00

First gym session for several months (since July to tell whole truth) and so I took it reasonably easily as this has to be a gradual process.

After the recent NYC M meeting am imbued with a new sense of purpose and a desire to follow the Dr Slonim protocol and to be "compliant", or at least more so, in 2012.

After a Christmas of considerable excess I am a good way from where I want to be and so am setting a couple of goals for 2012, namely:

Weight to fall to 75kg (82.4kg this morning)
To beat my best 2011 treadmill workout of 50 minutes at 6.2 kmph average and 6.4% incline average

I shall update the blog more frequently so please do hold me to account and encourage, cajole as needed.

I will aim for 5 gym sessions a week, less than Dr S would recommend but significantly more than I managed in the 2nd half of 2011 and enough to allow me to improve markedly over the next several months.

No alcohol now until 11 Feb at the earliest and will start a juice detox as phase one later this week.

Will leave coffee and diet coke to be dealt with at a later stage!!!

Not a bad start today with 50 minutes on the treadmill at an average speed of 4.7 kmph and average incline of 4.4%.

Emerged victorious

2010-07-22T14:47:00.000-07:00

A long day of walking, mainly uphill, across 4 peaks left me feeling a huge sense of achievement - would never have thought I would have a day walking like today and still be in one piece at the end. Grateful for this career break opportunity.

Royal Welsh Show

2010-07-21T11:13:00.000-07:00

Brief walk in the rain through the Elan Valley completing yesterday's task before enjoying a relaxing afternoon at the Royal Welsh Show - could not believe the exhibit that featured a batty looking older lady with two otters roaming freely inside her baggy clothing- most odd. Debuted on BBC radio Wales with a brief interview about the Walk and our efforts to raise awareness - amazing what you can do if you ask............otherwise a very enjoyable afternoon with an insight into rural life and the agricultural community. Still a long way to Cardiff and a tough day awaits tomorrow..........

A Great Day

2010-07-19T14:17:00.001-07:00

The sun shone, we conquered two peaks from the depths of two valleys and in the evening I introduced our North American to the joys of the Wurzels and Max Boyce. 6 hours walking followed by blogging and photo uploads a lovely dinner and now off to the pub.

5 hours in

2010-07-17T13:40:00.000-07:00

Its sunny but the climbs have been steep and very long, asking myself all the way up, as calves and hamstrings moan, why am I doing this? Luckily company is good, conversation easy and views spectacular. Will be tired tonight as still quite a way to go!!!

Rest Day

2010-07-17T13:38:00.000-07:00

Thankful today is a rest day as we move accommodation. Thighs quite stiff after some over exuberunt climbing to find a non existant path. 5 or 6 high steps over heather had me concerned I had done some damage to the muscles so a little stiffness is a result. Tomorrow is another challenging day so will be stocking up on Kendall Mint Cake this morning and searching for a good cobbler...........

Saved by Kendall mint cake

2010-07-15T12:18:00.000-07:00

Feel like a proper hill walker today as in my backpack I have a new waterproof backpack cover, rather than the ripped up plastic career bag I had yesterday.

Brother Paul, who kindly drove me to Wales and his children Alice and Henry left this morning for the long drive back to Winchester having walked with us (A and H in bin bag rain jackets) yesterday.

Awake to another windy, wet, and murky Welsh day so pleased we got rid of a long steep climb yesterday evening. A long day ahead though and will try and resist finishing with an ale today.

A tough start saw us lose our way, have to retrace and then slog along a barely visble track as cloud descended all around us. Very pretty slate quarry at the centre of our route, seeing it once was good , twice perhaps excessive.

Then it was a long hard slog uphill in a bog of a path. Half way up I became a little light headed. Thankfully Stacey had some KMC, which got me going again and gave me a good lesson. This is no walk in the park and I need to prepare accordingly and get emergency provisions in the bag from now on.

The bog was to get much worse later in the day. Did someone say drought?

This was a long day and we were all delighted to get to Machynlleth 7 hours after we started, where I celebrated with a small doner delighted in the knowledge that tomorrow is a rest day!!
Sent from my BlackBerry Wireless Handheld

Day 1

2010-07-15T12:17:00.000-07:00

Awake at 5am jet lag is inescapable whether you are walking or not. Good to see Intel had its best ever quarter.......... Sky cloudy but, as yet, dry. Last night's couple of pints at the George III over dinner leave me feeling slightly dehydrated. Good to meet the team who have already covered the worst of the terrain and the highest peaks. Hope I can keep up Andrew(Wales), Stacey(Toronto) and Dan(San Diego) will be my walking companions for the next 3 weeks. Swapping diagnosis and McArdle's incident stories meant for a very easy introduction.

Day one turned out to be very enjoyable despite the constant threat of being overtaken by a Saga tour on any uphill stretch. We went on a little further at the end of day to shorten tomorrow. Rained sporadically throughout the day and several long, and quite steep stretches were quite testing. Horse flies have a nastier bite than mosquitoes but to my knowledge no threat of disease. We finished the day in Abergynolwyn with a steep stretch to save doing it first thing tomorrow from cold.
Walking with fellow McArdleite's is much more sympathetic than usual as when one of us stops we all know why and stop as well. A good day's walking. Feel a pint coming on!!!!
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Winchester to Wales

2010-07-14T02:47:00.000-07:00

Uneventful journey to the land of my fathers in gathering gloom. Lots of hills -too many hills. Stopped for afternoon tea at Llanfair Caereinion steam railway station just as the train pulled in. Then on to base camp for the first few days - glad tomorrow is an easy walk. Must apply more surgical spirit this evening.

As we drive into Dollgellau among rolling hills the enormity of this challenge hits me. I hate hills and heights, and would rather drive than walk..........

Ready, steady

2010-07-11T06:17:00.001-07:00

Sunday evening and I am in the SQ lounge at Changi airport on the first leg of my journey to Wales, one of the perks of my former job - the red wine is flowing nerves though are building as I contemplate the size of the task ahead of me. Just two days ago my legs complained bitterly as I made the simple walk from car to restauarant with my wife , and brother just a little more quickly than McArdle's would allow. My calves are still sore - what will over two weeks of walking the welsh peaks do?? Its going to be a new experience for me that's for sure!!

Testing my new Thorlos walking socks

2010-06-30T21:19:00.000-07:00

As the main event begins in Wales tomorrow i shall be trekking round macritchie reservoir here in Singapore sporting my new Thorlos walking socks - hopefully blisters will be a thing of the past now i am more properly equipped!

Walk over Wales 2nd July - 2nd August

2010-06-16T19:56:00.000-07:00

Another rapid 11km round MacRitchie- am hoping training in this heat will help when I get to Wales - praying it won't be cold and damp!! two pairs of socks seems to have solved the blister problem while a friends advice on thorlos socks will be taken.........

Less than a month until I start - looking forward to it - i think!

Walk over Wales 2nd July - 2nd August

2010-06-10T00:30:00.000-07:00

When in the early weeks of a career break I first heard of Andrew Wakelin's plans to Walk over Wales I was tempted to join but wary of making a commitment my body could not keep.

Now that I have committed to join from 14 July onwards I am both excited and nervous about what lies ahead. McArdle's has meant I have always shied away from a physical challenge- I was reminded today when making lunch just why - simply slicing a cut of pork into stew sized chunks required me to stop several times and left me with aching arms - since diagnosis 5 years ago i have though become much better at walking and have learnt how to pace myself.

Yesterday, as an example I walked 11km around Singapore's MacRitchie Reservoir in preparation for the WoW - slowly at first but after a sufficient time to allow energy to be sourced from the blood rather than muscle I was able to build to a fast walk. And on the second half even to attempt to run/jog up any inclines - if they were short I made the top - if longer the inevitable effect of McArdle's kicked in and I had to rest before carrying on. After plenty of stretching at the end my only problem today is an enormous blister from my new trainers!!!

One month to go - bring it on!!

My exercise prescription

2010-04-20T19:09:00.000-07:00

I have added above the exercise prescription I received on visiting Dr Slonim in 2005 - I should emphasise that this was specifically tailored by Dr Slonim for me after a number of tests. I have changed the regime substatially since then, but crucially retain the same overall regime -ie slow warm up and then graduall increase to maximum exercise. i also now push myself in the final stages of the workout with higher pace or higher incline and then ease back before having one final push.

Cricket - my saviour??

2010-04-20T18:26:00.000-07:00

As I have said before I am lucky in that my McArdle's is quite mild - i now believe that my lifelong passion for cricket, thanks dad!!!!!!!!!!, has had a role to play in making my battle against the disease at least possible. I recently came across some old school reports, which highlight how the game has helped me. After the first term, aged 11, my Housemaster, a lovely man, had this to say:

"He is a pleasant, courteous and willing boy, perhaps a little shy. He tries hard at rugby but it is likely that his main contributions will not be on the games field."

rugby in truth was a real challenge for me - as any McArdle's sufferer could imagine - much too physical. Cricket was a different matter. I had the advantage over many others in that i had been schooled in the game since a very early age by my father, who in another era might have played at a higher level than village cricket, where he excelled, while it is a game where reflexes and timing are as important as muscle strength, and so I was able to compete - certainly McArdles prevented me from being as good as i might have been but cricket meant i kept active and helped my self esteem no end:

After the summer term the same Housemaster had this to say:

"The advent of the cricket season has revealed a new dimension to him: enormous confidence. he has performed well in this sport both for the house and the school and i hope that it will lead to a continuation of this present exuberant attitude."

Cricket has been the one sport i have been able to hold my own in and has been the incentive to fight the disease and to keep moving. While i am not playing here in Singapore I hope to resume my career when we eventually return to the UK, as i want to play alongside my son and that is one incentive to keep exercising to prolong that possibility.

The benefits of a career break - back on track

2010-03-11T04:30:00.000-08:00

Two weeks into a career break - a delightful opportunity to spend time with the children, lose some weight and devote the mornings to exercise, and, after having let things go in the last 6 months I am doing well. A routine is being established- morning dog walk, starting slowly, an hour in the gym, on the treadmill and then a 20 minute walk to the shops, and back if shopping is not too heavy. Twice a week my 7 year old has swimming lessons, rather than sit and watch I am getting in the pool and doing laps- dragged along eldest daughter(12) and son (10) and while the former comfortably beat me kept pace with the 10 year old and did 20 lengths - room to improve though and working exercise in to daily life is a real benefit overall. feeling good.

On the treadmill am finding that gradually increasing tempo and incline for the first 50 minutes, then dropping both for 5 allows me to then operate at a higher incline and pace for the last 5 minutes- enjoying sweating through exercise again. Have even managed to attack several flights of stairs on my shopping walks - of course i approach seizing up but stop just before and find recovery is speedy. That seems to me to be a key -know when to rest, ease up and then carry on....................................

Two questions

2010-02-21T01:47:00.000-08:00

Does anyone famous have McArdle's?

How to we change GP protocols to get earlier diagnosis? I had several instances of rhabdo but was always sent for kidney tests- never CK levels- was I just unlucky?

Answers by comment below please.

Did not use it and lost it!!

2010-02-21T01:06:00.000-08:00

Well it has been a busy few months and after a few weeks feeling off colour and a hectic travel schedule I slipped out of the excellent exercise regime I had set. Several months later and I have certainly regressed and find keeping up with the children more of a challenge, while wieght lost has been regained.

That's the bad news - the good news is I did make it to the gym last week and it was not as hard as I expected. In a weeks time I finish with J. P. Morgan and will take several months off. I intend to blog daily and set myself some goals for the end of March and then April - weight loss and an exercise target will be the keys - and I intend to track diet and exercise quite closely,which I hope will help others with this same condition.

Was amazed to see the number of hits to the blog when I logged in today - if yiu have found it helpful please do comment.

2009-09-08T05:46:00.000-07:00

Back from another week in Koh Samui and despite three weeks in the UK with little exercise now a trim 76kg and on top form in the gym. After two weeks back managed 50 minutes today with an average gradient of 8.4 at an average speed of 5.5 kmph, all done through gradual increase. At the end of that session I was then able to jog at an average speed of 7 kmph for 15 minutes without too much discomfort.

75kg in sight and hoping for further improvement in the gym, where i am no longer the slowest person in the room and actually come of the treadmill perspiring from exercise, which is a fun new feeling!!!

In one piece

2009-06-14T22:48:00.000-07:00

Somewhat surprised come Saturday morning with being able to get up and dressed unaided. Minimal stiffness despite quite a lot of playing time during two hours of touch rugby. Now Monday and no residual stiffness at all so long warm up and post game stretching clearly beneficial. Next step cricket!! But more gym time first.

The virtuous circle

2009-06-11T23:34:00.000-07:00

The more I exercise the better I get. always building slowly but today I set another PB with 50minutes on treadmill at average speed 5.3k and incline 4.3%. am now able to start at a pace of 3.5k without problem.

Weight has gone in the wrong direction after my son's rugby tour in Sydney. boys had one tour Dad's another meeting up to watch their games and then drinking and eating too much. highlight outside the boys' great performances was actually outpacing another Dad as we walked up a very long uphill slope in Sydney-and having the capacity to have gone faster. That kind of event is what is keeping me on a regular gym schedule. of course lifting or unscrewing a lid still has the inevitable consequence!!

Tonight after another treadmill session to warm up I am going to try and join in a dad's touch rugby session. Emphasis on try!!

Exercise works

2009-05-27T03:38:00.002-07:00

Well last time I updated the blog I was feeling drained completely, today, as I write, things are turned on their head as I am full of energy. I am convinced that instituting a regular exercise programme has been key, along with improved diet.

It all started back in January when i again visited Koh Samui for a detox. There along with the usual fasting and system cleansing I spent time with a nutritionist who advised me on a healthier diet. Lots of seeds, fruit and salads with mid morning snacks (similar stuff) to keep energy levels up. She also prescribed some supplements, including vitamin B complex, and increased exercise (well some at least). In March feeling much improved I joined a gym in the same building as my office and started a daily ritual - initially I followed the regime set down for me by Dr Slonim despite looks from many in the gym who had never seen a treadmill go so slowly- 1.8kmph to begin with rising to 5.1kmph. At the same time I began taking long walks with the dog at every opportunity.

More recently I have taken to visiting the gym twice, and even once three times, a day for 50 minute treadmill sessions. the gym, of course has tried to set me up with a personal trainer- I have declined and have instead pushed and challenged myself to progress, inspired by fellow McArdle's sufferers conquering the mountains of Wales, or jogging at 7kmph.

Today, I am convinced, I achieved lifetime PBs (not bad at 47) with back to back 50 minute sessions separated by a 5 minute break.

In the first I walked at 3.5kmph for 10 minutes before gradually increasing both incline and speed to a maximum of 6 and 6.5kmph(average 2.2 and 5.2kmph). in the second i was able to start from the off at 5kmph and gradually increase over 15 minutes to 6.5kmph. Thereafter 6.5kmph became base camp and every couple of minutes i increased speed to jog at speeds ranging from 7.5kmph to 9.0kmph - all virtually pain free. Toward the end of each jog my thighs began to burn so I quickly slowed to 6.5kmph. Average speed over 50 minutes was 6.5kmph.

in truth getting here has taken much longer than since march as my detoxes since august 2007, which have helped me drop 8kg to a steady state of 78kg have been an important factor as has a gradual increase in exercise (albeit not regular since first seeing Dr Slonim). Regular daily exercise has been a key to the recent dramatic improvement, though I am all too aware that with McArdle's it is a case of "use it or lose it. for this reason I will be doing my utmost to maintain momentum.

In truth getting here has taken much longer than since March as I think my detoxes since August 2007, which have helped me drop 8kg to a steady state 78kg have been an important factor as has a gradual increase in exercise over the period. Regular daily exercise though has been a key to recent rapid improvement and I am all too aware that with McArdle's it is a case of "use or lose it", so I shall be doing mu utmost to maintain momentum.

The best part is dismounting the treadmill dripping in sweat, something I have rarely achieved, if ever, historically!! That and keeping up, if not leading the way, on family excursions even on relatively long, relatively steep inclines.

Will update next when i have progressed further on both exercise and weight fronts- if things continue to go well i may target joining Sir Ian Botham for his next walks around the UK in 2010.

yours in exercise

Andy

November update

2008-11-17T20:24:00.000-08:00

At home feeling listless and searching the net to find some source of help and perhaps explanation of whether this overwhelming fatigue is McArdle's related, so time for a quick blog update.

By mid year my weight was back at 86.5kg so I travelled to Koh Samui for a week of detox at the Samui Spa resorts at the end of August. I lost 5kg in the 10 days of pre-cleanse and fast at the spa and had a great time since then I have continued to eat a more healthy diet and am presently on track to achieve my year end target of 75kg @ 77.8 today. Up until this current malaise struck I was exercising frequently and travelling extensively on business. Luckily November has been light travel wise, so am keeping up work wise but it is a struggle presently and my social life has been not existant for the last two weeks.

Main symptoms are simply tiredeness, light headedness and a feeling of muscle weakness in standing - several times I have felt about to faint but to date have not - more blood tests I guess.

So far so good

2008-01-10T03:57:00.000-08:00

10 days into the new year and on both the exercise and weight front things are progressing nicely.

Weight

On reflection my weight on NY day was probably something of an anomaly but perhaps overstating the position is helpful as weight has tumbled off since. This morning I tipped the scales at 81.5kg thanks to a fairly strict, I think McCardle's friendly, regime of Tofu treat (not sure these two words sit comfortably together) for breakfast, chicken salad for lunch and protein and veg/salad for dinner. the odd chocolate has so far not derailed progress.

Tofu is interesting stuff - high protein, low carb and low cholesterol - seems the perfect McCardle's food, unless of course texture and taste are important to you. Fortunately a dressing of fried onion and garlic in a light soy sauce provides flavour. Will se how cholesterol stands at the end of the month as I hope to avoid going back on drugs.

Progress is though threatened by my father's arrival yesterday with enough sweets and biscuits from England to open a small shop......

Exercise

Somewhat more remarkably I have managed to stick to the daily exercise regime prescribed by Dr Slonim.

Two minutes in to my first session on New Year's day I doubted I could complete the 45 minute session. My Calves were screaming even at 1.8km per hour. I kept going and managed to complete the session increasing speed in two minute intervals up to a maximum of 5.1kmph.

10 days on and now the regime is much easier, though I have switched to early morning and have noted this has been more difficult. Mid afternoon has been best when I have been able to peak at around 7kmph and sustain this speed for several minutes without issue.

The Singapore climate means for the first time in a while I have raised a sweat exercising - not sure I will ever experience the endorphin rush people speak of but am certainly pleased with progress so far.

Next week sees my first business trip of the year - 3 days in North Asia so it will be a challenge to fit exercise in around my business meetings and daily flights. The regime though does at least allow blackberry use while on the treadmill so time can be used efficiently even if it is likely to induce the odd glance from other gym users at the initial snails pace walk.

New Year and a new start............

2007-12-31T22:17:00.000-08:00

Celebrated the end of 2007 in great style at the Singapore Cricket Club with the New Year piped in by the Singapore Contingent of the Gurkha's . This morning brought the reality check following over indulgence in the festive season. My dress trousers gave a rather sizable clue last night that all was not well, the scales confirmed the sorry full story this morning - 85.5kg is not where I need to be. So have resolved both to update the blog more regularly and get the weight down, ideally by 10kg before next New Year's Day............

After a fantastic week of detox in Koh Samui ,in August, in truth I thought I would be there already but a hectic travel schedule, failure on the exercise front and a very alcohol fueled festive season have left their mark.

The detox was a tremendous week and for two months afterwards I was noticeably more energised so will be doing that again this year - tried yoga while there but that is not something for those of us with McCardle's and I quickly decided a massage was a far safer alternative.

Despite not exercising McCardle's still does not impede me too much - of course regular cramping from playing with the kids is painful but not overly so.

A Happy New Year to all

Still failing and Cholesterol rising

2007-06-14T04:53:00.000-07:00

As a link has kindly been added to my blog from the AGSD website I thought an update in order- sadly I have yet to re-establish an exercise regime - a hectic travel schedule round Middle East and Asia is my excuse- still find I can usually beat most people to immigration though! even in Asia's vast airports.......I know though I should get back on the treadmill.

Knowing I have the disease does help and it means I :

a. let my wife do any lifting (despite odd looks from those who do not know)
b. stop before I do damage - tried to join in a father's touch rugby game recently but quickly decided discretion was the better part of valour, while cricket has been given up until we return to the UK. I need the lightening fast mid summer outfield of my village team rather than the cloying grass of Singapore and its big boundaries before I can return.

Cholesterol is a problem though and mine is too high - cardiologist knows I can't take statins (Red Yeast Rice apparently contains them) so we are trying Ezetrol and Niaspan (taken at night to avoid hot flushes that can accompany it).

All three children seem free from the disease with my eldest daughter swimming, son playing as much sport as he can and younger daughter running around happily enough.

Must get on the treadmill.........................

Exercise regime

2007-03-25T05:32:00.000-07:00

Fair to say I am failing at this presently- a hectic travel schedule is not helping along with long work hours but I have to try and do better. In someways the fact that most of the time I am quite normal means the incentive is not perhaps as strong as it might be.

This weekend have managed to coach an under 8's rugby game, having warned one of the other dads that if I waved it meant I needed replacement and have danced the night away at a ball. Feet and calves struggling but broadly in one piece. I did manage to strain my hand carrying a plate awkwardly at dinner time though..........................

Must try harder..............

Am sure that two of the children are unaffected by the disease-my eldest completed four races in a recent swimming gala at pace -something I could never have done, while my son managed 4 10 minute 8 aside rugby games and was eager for more............

Diagnosis - tell tale signs

2007-01-27T05:03:00.000-08:00

For me they would be as follows:

Muscle pain on walking, particularly uphill, with first calves, then thighs, then chest and arms all aching until there is no alternative but to stop. A short rest revives and enables you to carry on.
A steady pace can be maintained for often long periods but any attempt to up the pace is likely to lead to the same symptoms as above.

Stairs cause thigh pain and it is simply not possible to go on at a certain stage because muscles become frozen.

Over exertion leads to severe muscle stiffness which can last days.

Simple every day actions cause muscle spasm- opening a jar often causes my hand to spasm.

Not being able to keep going when doing tasks- sawing would always see me stop well before what would be considered normal.

Finally if your urine is coloured by what you think is blood after exercise this is a sign of muscle breakdown (rhabdo)- I have had this happen 4 or 5 time each time after exercise and I knew it was somehow muscle related. If it happens to you make sure to ask for a CK (Creatine Kinase) blood test as elevated levels are easily detected and are a sign that McArdle's might be the problem rather than a kidney complaint.

How can getting your hair cut cause pain?

2007-01-27T04:59:00.000-08:00

If you suffer from McArdle's it is all too easy. A week or so ago I was enjoying a relaxing head massage, while having my hair shampooed by a young lady, until it was time to rinse. Head back resting on the base of the sink was fine but when she lifted my head to rinse out the hair on the back of my head my neck muscles were unsupported and as I sat to type this note I felt the stiffness and aching that resulted.

Any sufferer knows lifting is not something they should do and even supprting the weight of one's own head can be too much in these circumstances..........

Dr Slonim- a great help

2007-01-27T04:43:00.000-08:00

Based in New York Dr Slonim is a world expert on the disease and takes the time to explain to patients what it is and what they should do to guard against deterioration. For me he recommended the following, (I would emphasise though that each programme is tailored to the individual after a session being closely monitored on his treadmill) :

a daily (every day!!) 45 minute session on the treadmill. The first ten minutes at a snails pace of 1.6km per hour (that gets some looks in hotel gyms across Asia). Followed by 0.3km per hour increases in speed every 2 minutes. At 30 minutes to raise the incline to 2% and then 3% and finally 4% at five minute intervals.
arm exercises with a large rubber band-which I admit I have lost
a diet high in protein and low in carbohydrate to promote muscle regeneration
a supplement of alanene - small dose regularly

The idea of the exercise is to gradually get going and reach the stage where your body is using the energy within the blood rather than seeking to take it from glycogen stored in muscles. I must confess I do not manage every day though I am trying hard in 2007!!

Since seeing Dr Slonim I understand my disease more fully and have certainly not deteriorated, while he has worked wonders with many other patients.

His clinic is in New York - details as follows:

Center for Metabolic Disorders

Telephone: 516 616 0074

Facsimile: 516 616 9388

The relief of diagnosis

2007-01-27T04:09:00.000-08:00

My recent diagnosis, at the age of 44 by two doctors in Singapore brought with it an enormous sense of relief and an explanation which I have sought for so long. To finally know that my weakness is not just laziness, a pathological aversion to exercise or simply a negligent attitude to fitness is solace. Diagnosis also brings with it, since the disease is hereditary a fear that my three children may suffer similarly, although at least if they do we will now understand why.

They disease is supposed to be auto-recessive meaning that both parents need to be carriers for a child to be affected. It is clear that my eldest two children are not impacted- my son has the energy at any sport that I have always longed for - my youngest complains of aching legs, which makes me wary and is a symptom we will have to watch out for.

My final diagnosis came courtesy of the alertness of Dr Ng a Singapore cardiologist and his attention to both patient notes and a chance remark. I had first visited his clinic in March 2005 when early morning chest pains caused me sufficient concern to seek medical attention. Thankfully the blood test and ECG showed no heart problems( although the blood test provided Dr Ng his first clue). A treadmill test confirmed this but revealed me to be“surprisingly unfit” (not to me) as the increase in speed led me to have to give up half way through the test.

A routine cholesterol test revealed a sufficiently high count for Dr Ng to recommend statins, which he warned me may cause muscle aching. I jokingly said that was something I was used to and after further questions Dr Ng decided to check my CK (Creatine Kinese) level. I left his practice and returned to the office and was surprised to receive a call a little later requesting I return to the hospital immediately and check in for observation. My CK level, which indicates muscle breakdown was over 3,000 - 3 days on a drip and a muscle biopsy was scheduled, which gave the conclusive diagnosis.

Undiagnosed -A recipe for humiliation and feelings of inadequacy

2007-01-27T04:03:00.000-08:00

For as long as I can remember, and even before, I have lived with muscle pain that has sporadically led to a feeling of humiliation and inadequacy,with that humiliation sometimes painfully public. While with the disease more widely recognised several hospital visits and numerous tests, some invasive and potentially dangerous could have been avoided. But more of that later......

My research on the internet, and membership of a great on-line community, has quickly revealed the condition to be rarely diagnosed, but whether it is in fact rare is unclear.

Accordingly my blog is designed to draw attention to the condition in the hope that other sufferers may be more speedily diagnosed in future and saved the humiliation I have often felt, while I will try and keep up to date with my progress on the regime I have been given by it Dr Alf Slonim, a great and devoted doctor who has helped many with this and other diseases.

My parents have often told me how even at an early age I hated walking and after a short distance would complain my legs ached. As an adult I used to find any excuse to avoid walking with colleagues even a short distance, while I have an aversion to hills bordering on pathological.
I could not begin to count the number of times I have stopped to needlessly retie a shoe lace or in recent times to get cash I didn't need from the ATM at the top of the Bank tube station walkway.

All because my body lacks an enzyme to enable the breakdown of glycogen stored in my muscles. A short rest and I can walk on as the energy supply from my blood kicks in and allows the muscles to function without cramping up, but by then friends and colleagues are yards away looking back thinking who knows quite what.

At school I remember swimming to have been a particular challenge, while I could swim quite well underwater on top I would quickly have to give up as muscles cramped up and I ground to a halt. A junior school house lengths is my first recollection of humiliation in public. I managed to complete my length but not before those on life guard duty came to the side of the pool to pay particular attention to the poor weakling who seemed in peril and who was delaying proceedings with what must have been one of the slowest lengths in school history.

My parents tried, as good parents would, to build my strength, cod liver oil and malt, the smell of which to this day makes me nauseous was the first and most oft used remedy. Their worst attempt though was the present of a Charles Atlas Bullworker one Christmas, which simply served to emphasise my inadequacy. A few attempts to use it resulted in rapid failure, while friends were all too adept. It very quickly was consigned to the very back of the toy cupboard. I don't recall what I really wanted that year but I do know Charles Atlas was not it!!

At school my attempts at most sports were not good, despite my love of most ball games and a degree of aptitude. Running has quite simply always been a problem and hence though I love football the first five minutes would always be agony, and anyone watching would quickly deduce I was hopeless.Rugby and hockey presented similar problems. The days that followed games over many years, and to this day, would also see me wander around with a degree of stiffness most people would associate with far more demanding excercise. Athletics was simply a search for the least worst option, the400 metres was to be avoided by any means, and so the shot putt or the javelin became my pursuit of choice, very short, and in my case very minimal exertion followed by plenty of sitting and waiting for the next pitiful attempt.

My house master at Bristol Grammar school noted in one report that the onset of the cricket season had brought with it a huge increase in self confidence and an increased respect from peers. Cricket has always been my sport and I was able to represent Bristol Grammar school and The City University and played to a reasonable standard. A reflex catch at short leg takes little exertion, and I took a number. Running between the wickets can with skill be controlled by appropriate calling, except of course in very tight situations. In one such, as a junior player at Flax Bourton CC I recall attempting a third run and coming to a grinding, inexplicable halt mid pitch. Dismissed run out I walked back to the pavilion close to tears unable to explain what had happened or why. Now 30 years on I finally have the answer. I have continued to love the game passionately and have achieved some success, though disaster has it seems been only several consecutive two's or god forbid an all run four away.

In the last two seasons I have taken to eating a banana before each innings and my general play seems to have improved, but I know I have got out on many occasions over the years through worrying about how I would be able to run the next single, rather than focussing totally on the ball.

Sufferers of the disease get a second wind after the energy supplied by the blood kicks in and personal examples of this are many. Some 20 years ago close friends who love mountain biking had organised a weekend away for a group of university friends, on the South Downs, while anxious prior to the weekend I did not want to miss a close friends birthday celebration and so made the drive down and stood early one Saturday morning bike at the ready to face the day ahead. As fate would have it we quickly faced a long uphill stretch and within minutes the familiar cramping of leg, arm and chest muscles began. Mercifully just as I was about to stop and head home the chain came off another participants bike and we all stopped, much to my relief. The short rest enabled me to carry on barely troubled for the rest of the day.

Hills in truth have always been an issue even a relatively modest incline. The walk to my father's car after our regular visits to Ashton Gate (home of Bristol City F C), became something I dreaded as a child. We used to park a short walk from the ground but critically for me this was at the end of a long incline. Each visit I left the ground hoping this time I would make it back to the car without stopping, but each time I failed as leg and then arm and chest muscles would cramp up at roughly the same spot . My father never lost patience although he encouraged me to try and walk on. In truth this is something a McArdle's sufferers should never do as it can cause muscle damage. But how were we to know. Mum had taken me to see doctors but in the 70's the disease was unheard of .

I recall a visit to the football club with my father for circuit training. By chance the then manager was in the changing room and dad asked for his analysis, which was broadly work harder and weakness brought on by laziness will be overcome. So I embarked on an effort to strengthen my body convinced I was simply too lazy, but as with many attempts since success did not follow.

At the age of 23 I moved courtesy of Midland Bank to Hong Kong and enjoyed a fantastic 18 month spell there, where I experienced my first McArdle's enduced hospital stay. A friend suggested I join a local gym and so I headed for Tom Turk's convinced maybe this time I could get fit. The trainer put me through a series of exercises, including some sit ups and a number of some back exercises. A pre-arranged game of squash followed and by the time I got home I was already in some pain. I was shocked on visiting the bathroom to see my urine stained red by what I presumed to be blood and when I could not move the next morning I was taken to hospital, where I spent several days. In 1986 there were only very few cases of McArdle's worldwide and hence it is no surprise my doctor looked elsewhere for a diagnosis. A cystoscopy and a renal biopsy( a procedure I only learnt later in life to be dangerous) were ordered and undertaken but revealed nothing. Needless to say I did not return to Tom Turk's and until my diagnosis always thought that they had simply pushed me too hard and that I was too weak.

On several occasions since I have experienced a particular muscle tightness, which I have learnt can precede dark red/brown urine, and twice I have been hospitalised, both after cricket and an injudicious (for me) attempt at an extra run. On each occasion my blood has been tested and my kidneys examined but on neither was the possibility of McArdle's considered. Though I remember being convinced this was somehow a muscular problem - but how could it have been?

Over the years I have often wondered whether my weakness could have a cause other than laziness, while bouts of fatigue have been explained by post viral syndrome.