My new normal - "normal" yet surreal...

The last few days have been non stop and oddly I have been the family member with the most energy and plenty left over. On Tuesday at Commonwealth games roles from any other stage of my life were reversed. I dropped wife and kids at entrance and drove to park the car a good 15-20 minutes walk away. Seemed to eat up the yards and hills on the way back. Well remember a football match (Bristol City away at Charlton) with my father. We were hurrying away from the ground post game as things were a little spicey. He at 65+ almost ran up a hill to the car while I waited at the bottom...

On Monday  I was up at 6am, in gym by 6:30 for a warm up 1.4k in 12 minutes followed by a 50 minute jog, average speed 8.2 kmph (new PB) then a family walk before 12 holes of pitch and putt and an hour plus drive to Glasgow. Back home around 11pm. A full and fulfilling day with mate's daughter winning Commonwealth Gold very special icing on the cake. 

Cheeses, eggs and yoghurt along with fish and meat formed my diet. Will check ketosis in next couple of days. Feeling very good though.

Even managed to run for a bus today!!

Am now testing this further by signing up for a couple of games of cricket in the next two weekends. One with another 3 mates from The City University team of 1984 turning out for Hinton Charterhouse and one, on 9th with my son for our UK village team Mortimer West End. Can't wait and more huge incentive to keep off the carbs. 

Need to find a gym though but should be able to fit in a treadmill session in London next week if not before.

Ultimately an excellent Friday and new PB by some distance

Up for early gym session with Jony and a chance for him to see me on the treadmill before thinking how best to progress. At the very least if I make the squad or I don't at least one more gym instructor/physio/team medic will understand this disease.

Only mildy in ketosis, really do have to get the diet sorted. While up, into taxi, straight to gym and then on the treadmill was probably the coldest of cold starts.

I just did a 12 minute treadmill and walked/jogged 1.35k - was disappointed with how i felt this morning.

Then to work before a heart stress test, which revealed nothing out of the ordinary and where cardiologist said he was happy for me to stay off crestor for 3-4 months and see how I go with a Ketogenic diet. He has seen friends lose a lot of weight on such but for me the diet is now for very different reasons - Normality!!!

Quick creamy yoghurt infusion and after another 2 hours at the desk of to the gym.

This time much, much improved and for once I was far from being the least able on the treadmill!!

Did the 12 minute session again and managed 1.49k, starting with brisk walk at 7k then jogging and slow back before 6 minute jog to end.

 

I stopped and then immediately started my normal 50 minute session. Quickly established a jog at 7.7K and maintained that for 40 minutes then for the last 10 minutes gradually incrased speed to 8.5 and then to 9 and above for the last minute. In total I jogged 6.4k at an average speed of 7.8Kmph.

 

That is a 25% improvement on length of time jogging continuosly over previous best set last week, 6 times better than my previous best ever jog of 8 minutes set earlier this year in Kuwait. It is also 0.6kmph better than my best ever previous average of 7.2kmph......

Happy with tat now to make sure during 3 weeks in UK i don't go backwards...

Will be keeping an accurate exercise and food diary and will see where this leads.

may not have the same opportunity to blog but when I can i will..

First business trip

Wednesday

Business trip to HK. Kept broadly to a water fast today but for a mini mouth sized quiche and some cheese on flight. Raced through Hong Kong airport with barely a murmur of complaint from muscles that normally would have been screaming.

Despite little sleep this week I feel energised and enthused both with work and extra-curricular activities that I would normally not have the energy for. Often in the past M has meant just keeping going has been a struggle with periods of work, sleep a lot, work sleep a lot, rest frequent. 

Thursday

Breakfast of fish eggs and cheese followed by 24 hour water fast before exercise tomorrow. The taste in my mouth this morning is a familiar one from the fast so I think am in ketosis will check tonight.

‎Important that I am for 7:30 am gym session and subsequent heart treadmill test. 

Busy day buzzing around walking here and there with colleagues, at pace, without a care in the world. No longer worried about simple seizing up. Would not have believed it possible having spent most of my life avoiding walking with anyone if possible and always looking to meet at a destination rather than walk together. One Christmas long ago a fear of walking a young lady home, as I knew there was a long uphill slog between us and destination brought an end to a short relationship. She walked home with friends but was none to happy.....

Will I now become a last minute Larry having thus far always been early? I already seem less prepared to compromise. 

As I charged through Hong Kong airport this evening have eaten and odd mix of fried fish and cheese with a few veggies. Confident I am in ketosis. Usually I have a few glasses of red wine now 7pm waiting for an 8:30 flight, but not tonight!

On the flight I did though indulge 1 glass champagne, Cheese, Cheesecake and a two chocolates.

Landed midnight and home for a skype call with M guru Andrew Wakelin until 1:30am meant a short night of sleep.

Harder today but still a very good treadmill session

Just putting together a note while in cool down on the treadmill. Having pushed myself pretty hard this last 5 days my quads felt the twinges of M this morning and today's session was a little harder than it has been. I was slower to be able to jog. Tried at 16 minutes and managed a 3 minute jog at 7.5 kmph. I tried again at 20 minutes and from then on well in the grove. With 5 mins left of my 50 minutes session I upped my speed to 7.8 kmph. 3 minutes out to 8.1 and then 2 minutes 8.5 k. Finally with 30 seconds to go finished strong at 9 mph. 

Overall average 7.2 kmph. 

I have arranged the dreaded treadmill test with the cardiologist that diagnosed me, for Friday. Mt abysmal performance last time was one of the clues that led him to M. Am hoping to have remained in ketosis and to complete the test this time.

first thing Friday though have a gym session with the Singapore Indoor cricket fitness guru, Jony. Last time I did a supervised gym programme was in 1986 at Tom Turks in Hong Kong. An introduction I was shown how to, use each of the machines and to do several reps on each. this was well before diagnosis. next day full on rhabdo - but not seen as such, and every muscle in my body was rigid. 3 days in hospital, an endoscopy, cystoscopy and renal biopsy later we were none the wiser. i think to justify the expense they "found" minor glomerular abnormalities" - oh the joys of private medicine and a lost and confused 24 year old.

I am sure Friday will not be the same as i now know what i can do and what i cant do and am quite unashamed in saying so. bring it on....

Wide awake club

Awoke at 3am and as i was still not asleep by 4am have decided to get up. Was going to head for the office, but as trains are not running yet catching up on a few things and work email before heading in.

Attached are my 2005 exercise prescription and the notes Dr Slonim made in explaining the disease to me.

Singapore Over 40's indoor cricket

So my life at present is certainly not dull - invited to train with a group of over 40 players with a view to potentially playing in a tournament in New Zealand - not sure quite how. I joined the session this evening- the first time i have been coached, with the exception of one day at Lord's with Mike Gatting, in 30 years. I would not have dreamed of exposing myself to such a challenge 10 days ago - it simply would not have entered my mind. Tonight a warm up and 90 minutes of fielding drills - nearly non-stop were accomplished and I am full of energy and feeling no M effect at all. I did stop some of the warm ups when repetitions began to yield early warning signs - I know my body now and know when to stop. I had a great time met some new fellow cricketers and a physio with whom i discussed the condition and this magical fix that I have stumbled across.

I have signed up for a weekly fitness session, adapted to my needs, and weekly training from now until the tournament in New Zealand. Given this bizarre journey I might just make it.......needless to say I will keep you posted!!!

Losing Ketosis

A stiff neck needed ice and a single diazapam last night but is now resolved. I remain full of energy. Did not make a treadmill session. Instead am going for 90 minutes of indoor cricket! Oh the joys of youth...

on way back from the station this evening legs a little heavier than they had been. checked ketosis level and sure enough its lower will need to be cautious this evening. And may water fast tomorrow, Something i had planned for Wednesday in any event...

Update and brief synopsis

Update

Post my considerable exertion yesterday and an evening solo celebration of Lebanese (without bread), sparkling water and shisha, followed by watching England Vs India until midnight, I awake, with the lark, energised and ready for the day. 

My legs have not a trace of their usual post match stiffness, minor buttock twinge and more noticeable neck issue are the only signs that I did anything. But I can equally get the same neck effect if I lie on the sofa for too long!

I have more energy than usual so have walked the dogs and then spent two hours on the M FB Group and doing chores in my study that have been left unattended for months. Off now to watch some cricket. Feeling very lucky and now passionate to share. 

Synopsis how did I get here 

First off I must recognise the support of my family and my wife particularly. She has helped me through my lows, accepted there are things I simply cannot do and taken on those tasks willingly, any lifting being one such. She has also given me the freedom to explore the benefits of fasting with my annual trip to Koh Samui and that has been the hugely important last piece in my puzzle. 

Dr Ng Wai Lin a cardiologist here in Singapore was the man who like Sherlock Holmes saw a pattern in some odd test results. Put those pieces together and ordered the muscle biopsy that led to my diagnosis in 2005 at the aged of 43. 

Dr Slonim guided me on the right path when I visited him in September 2005 and I will attach later photos of my prescription from him and remember clearly his emphasis on daily exercise for 50 minutes and on higher protein lower carb diet. Would stress each exercise regime he set carefully and uniquely for each patient. I also attach the note he made and the diagram he drew in explanation of the condition. 

There were several opportunities for earlier diagnosis. With instances of rhabdo following exercise, which I knew had some muscular involvement but I did not know why. The medical profession looked to my kidneys when I presented with red/brown urine. Why a CK test was not done remains a mystery. So I am eternally grateful to the genius of Dr Ng Wai Lin.

Andrew Wakelin encouraged me to explore the possibilities and with the Walk Over Wales with he, Stacey Reason and Dan Chambers we not only had a wonderful time but shared an incredible and fulfilling experience as we slogged through the constant rain up hill (mountain) and down dale across Wales. Sally and Peter, Andrew's siblings and Rab picked us up each day, and Sally has been chef de cuisine on ‎that 2010 walk and each walking course since keeping us all nourished with delicious food and great humour. They have no doubt also been a great source of support for Andrew. 

The Facebook Group has also been an important source of encouragement and information. 

Jack Osborne, son of Ozzy, though he does not know it started me on my regular fasts at Spa Samui, an ideal place to learn the benefits of fasting, and to this latest fast that has had such a remarkable impact on my life. 

I firmly believe the wonderful game that is cricket has helped keep me fit enough, without leading to too much muscle damage, through my desire to play as much as I could. 

Following Dr Slonim's prescription has not always been easy and I have not been as compliant as I might have been but always recording how I perform in those 50 minutes has set me a benchmark and targets to achieve. Accepting that progress will be slow but that exercise is vital had enabled me to improve prior to the fast. 

Prior to the fast I would usually start a treadmill session at around 4.5kmph and gradually increase to walk at 6.5/7 kmph ‎and to intersperse with short jogs at up to 8.5 kmph. My best ever session averages 7.2 kmph with longest jog 8 minutes. 

In ketosis I have jogge‎d last week for 20 minutes, 34 minutes and 40 minutes without issue other than with breathing and boredom. 

Finally the fast, water only that led to ketosis. No one told me to do it, I did not discuss it with anyone - I just did it because I wanted to lose weight and get my cholesterol down. I probably took a risk in doing so but it paid off in spades and here again Andrew Wakelin was there to suggest ketosis, when I explained my unexpected improvement in exercise capability while fasting. He is such an enormous advocate for M people everywhere and does much unheralded work behind the scenes, unselfishly for the benefit of all. 

Then I guess my own drive to improve and refusal to accept the status quo and again cricket has a role to play as I have always wanted to stay fit enough to play the game with my son. This recent discovery may enable that for longer. 

The next steps are to follow a Ketogenic diet and see where that leads. Some may see risk I see an incredible opportunity. 

For now a wish I have held in my heart and soul for all my life has been granted. I know how it feels to feel "normal". I am more energised than I have ever been and inspired to dream more dreams and to pursue my passions with even more vigour and energy. 

Stay calm and carry on - Ketogenic

Well the results are in and i have a very clear and unequivocal conclusion. Exercising in ketosis works, no question, no doubt, at least on the aerobic side, sadly anaerobic is a very different kettle of fish.....

On the cricket side awoke early and was at the ground, like an excited kid, by 7:45am. Feeling good though twinges, on dragging my kit bag from taxi to field ,are a reminder that M is lurking, waiting for the opportunity of ambush. 

‎I decide to warm up and do a quick 5/6 laps of the field. Don't manage a sustained jog but do walk at pace. Young opponents watching on somewhat bemused. Twinges of M in thighs and calves. 

‎Somewhat unbelievably an eminent local Dr (thanks doc for your encouragement today, and indeed to all i played with) on my team and we started to discuss M. He knew all about the disease so will have some expertise on hand should there be an issue. He also noted he could smell keytones on my breath. 

We have won toss and will bat. Let's do this!

‎Short scratchy innings where I was probably more nervous than I have ever been playing a game and 

was thinking about whether I was feeling constrained by M or not. In the end a ball on a good length took the inside edge of my agitated drive and the walk to the pavilion commenced. One notable event was that I actually called for a 3 and pushed. I was running away from the danger end. But still would not be something I would ever have pushed previously. Took a breather before the next ball but was broadly fine. Hopefully before long I'll get to bat more and we'll really be able to tell....

Will be keeping wicket later so again interesting to see how it goes. ‎In the end I did not keep rather fielded at cover point like an over excited colt. Running in for every ball and chasing anything remotely close by. Several times I chased balls to the boundary and while throwing was an issue (think that must be anaerobic) I was always ready for the next ball and for once willing it to come to me rather than the opposite. What a change and what a feeling that is. 

‎I bowled 3 overs of filth but did pick up two wickets in two balls to be on a hat trick, one with a caught and bowled and the second at catch at short midwicket (sorry to my US friends reading this but it really would take too long to explain!. Less said about the hat trick ball the better!

The point though was not wickets or runs it was the capability to be out there in the middle without a care other than the ball. As if the straight jacket had been taken off, the shackles removed. Unbelievable so much so that I asked for the match ball as a momento. 3 overs 2 for 17 hardly memorable but the feeling I have today will remain with me to my grave. There is no drug known to man that could touch this and as I type tears are welling in my eyes. I think only those readers with McArdle's will truly understand.  I said to my father who is 82 imagine you woke up this morning and turned out for Flax Bourton 1st XI with the physical capability you had when you were 20 - it was like that, except I never had that capability at 20!

‎There is no way I will give this up willingly. No way, simply no way!

My thanks to those I played with today from Non-Benders and those I spoke to after the game from ANZA and from SCC for listening to the smiling lunatic who just would not keep quiet. I hope you will understand the emotions behind it. 

If this is to be the new normal then next time it's "simply" a game of cricket. Today though for me was something far more it was a new beginning.......I may also owe for a used match ball as mentioned above I have acquired one as a reminder of the day that I had confirmation that I do not need to allow this disease to limit me anymore. George prepare for lots of net bowling my son!

On the medical side:

My urine test on Friday night confirmed by turning dark purple, much to my delight, that am still in ketosis. PH between 5-6 which I will have to watch.

On the medical side my fast helped me make major progress and resolve, at least for the time being, one issue my Dr was becoming concerned about, sugar. Results as follows

l

Glucose ‎                                  61 vs l 110 in May

Total Cholesterol                    225 vs 327  in May

LDL.                                        166 vs 233  in May

Triglycerides                          114 vs 266  in May

Showing the benefits if the fast..........................

CK was 909 not abnormal for me 

Keytones 3+ showing I am well into ketosis

I will get retested‎ in mid August and in the interim will stay of Crestor and adopt a Ketogenic diet. 

Will update tomorrow with any post match issues. A little concerned about the muscles from the anearobic aspects of the game but not from anything else. For me being in ketosis unquestionably makes a difference other M patients will not know unless they dream and dare to try.......‎

Sorry England but I won't be watching past lunch have a big game tomorrow

....in fact the biggest game, for me, of my life playing cricket will be for Singapore's renowned Non-Benders, a veteran's XI, motto "Numquam Flectemus" and appropriate verse:

We may not bend, we may not throw,

We may not bowl at pace,

But the very least we know

Is how to play God's game with grace.

 

 



against  Singapore Cricket Clubs Colts team, unremarkable in itself  perhaps but for me a milestone because for the first time, aged 52, I now believe, I am going to be able to play without feeling the constraints imposed upon me by McArdle's Disease. My journey over the last few weeks has led me to a discovery that remarkably allows me to exercise free from the shackles of the disease, which have been constantly in my mind whenever playing. How will I manage to run another two this ball?(if I have run one before) what shot can I play to avoid that possibility? Please don't make me chase again to the boundary not sure I will make it. Around the age of  11 I first seized up mysteriously running an easy third. I cried as I trudged to the boundary clueless as to why I simply could not run the last three to four yards and was run out. 3 times since I have been hospitalised after playing with rhabdomyolysis.

But cricket I credit with always keeping me active and my passion for the game means I have made every effort to keep going, within my means, which has undoubtedly helped me to remain fit. In recent times I have walked miles around the boundaries edge, living vicariously through the performances of my son George. Some may say, probably including George himself, that attention is too much, but for me the pleasure I get from him playing the game,, with boundless energy and clear talent, is the next best thing to doing it myself. Of course watching Megan play touch or Hannah netball is hugely enjoyable. My game though has always been cricket. For George there is good news  - am hoping this new discovery will mean I can now enjoy my own performances!! Just wish I had found this potential dietary solution that enable me to exercise "normally" years ago.......

For those McArdle's people, today I went to the gym planning a quiet session. Once on the treadmill that was never happening as I simply felt too good. After 10 minutes of gradually increasing speed from 6k to 7k while walking, I then jogged for 38.5 minutes at 7.5k and a final 90 seconds at 8.0k for an all time new PB of 7.3kmph average and all mostly jogging. Being in ketosis through the fast I have undertaken and now a low carb diet is I am convinced the key to this success. Staying in ketosis means I do not need to access the glycogen in muscles that I cannot anyway. This is elegantly described here by a fellow M person who made the same discovery through research rather than pure chance some while ago:

http://www.devalcourt.com/2013/12/glycogen-storage-disease-type-5-ketogenic-running-and-paleo-primal/

Diet wise some meat and cheese an salad last night. This morning natural yoghurt and a coffee.

I feel like I have rubbed the magic lamp and my genie has garented me the one thing I have often wished for in the past - the ability to feel and exercise "normally" for just one day. So far I have managed 3 days and am feeling energised - up at 5:30am (after watching England find the wrong length consistently until midnight) and then 4 hours of hugely efficient work at the desk - I am at the same time excited and amazed. Now then genie how about that 50 I have been looking for....

I should end by saying I am simply reporting for the benefit of those with McArdle's my experience - being in ketosis allows me to feel normal. I am categorically not saying if everyone did what I have doen they would be able to achieve these results. They might but we each are differnet and not enough research has been done. Please though do your own research, check with your doctor, and consider the possibility.

There is no turning back for me - though I may manage the odd carb to rehydrate after the game.........

time to break fast

No treadmill session for me to day, hectic at work, my stomach was growling after I took a coffee to try and encourage my colon into action and as I am now playing cricket on Saturday and want to make sure I don't overdo the gym before then. 

Discussion on the M Facebook group has though unearthed 2 people who have been on a Ketogenic diet long term with very beneficial effect for their M symptoms. I wonder how may ore they are and hope our specialists will take a good look at this and consider whether current recommendations are correct.

Have broken the fast today with natural yoghurt and some delicious fried tofu. A little tuna sashima, delicious, and some chopped tomato with onion and garlic was a nice welcome back to food. along with a small portion of steak and kidney stew (not ideal for breaking a fast but who's counting) and a few teaspoons of peanut butter.

Will aim for a more controlled salad day tomorrow.

Will also do a modest gym session and then see if the freedom to only focus on the ball a:happens ‎and b: enables me to perform better. 

Maybe Jimmy will do it again too, and better next time.....

My Jimmy Anderson champagne moment (Fast day 11)

For those unaware Jimmy Anderson, England cricketer, and one of the world's leading bowlers had until last week not really be known for his batting. 

Until today I had never jogged for more than 8 consecutive minutes in 52 years of McArdle's Disease imposed inability. 

Last week as England battled India, Jimmy who had never before scored a 50 in his career, scored 81 in a world record last wicket stand. Afterwards he expressed his disbelief. 

Today at 6:45 am I got on the treadmill started at 6kmph and had two abortive attempts at jogging before on 16 minutes I started to jog again, at 7.6 kmph,  20 minutes later I decided not to push things too hard and eased back. Jogging for 20 minutes is something I never thought was possible for me - Jimmy probably had higher expectations of his batting....

8 hours later I feel that same sense of disbelief and equally of achievement. Am sure my fast has put me in the position to do this and equally sure that being in ketosis is the key. 

I hope Jimmy and I are able to repeat the feat, which is one, up until day 8 of this fast‎, that I thought was totally beyond me. 

Drs tomorrow for blood work and then perhaps one more day before I eat again and see how i can

Fast Day 10 and a way forward....

Day 10 of the fast and feeling a little jaded in the morning, (by evening I am back feeling great again). Have consumed two very small prawns and a few leaves in the business lounge prior to flight home (served in shot glasses so not a lot)‎. Otherwise plan to continue the fast and do my treadmill session tomorrow and see how I go. 

Will then pursue (subject to Dr not entirely ruling it out) a ketogenic diet for a while and see whether that will enable me to continue to exercise relatively freely. Could be an exciting couple of weeks and I will try and blog it as this feels quite significant. ‎

From my experience in the last few days it seems possible, under the right conditions, to exercise "normally" without the need to establish second wind. My assumption is, after discussion with Andrew Wakelin,  that Ketosis is the key. That as my body is operating already using energy from fat supplies, due to the fast, when I exercise it continues to do so. The inability to access glycogen then becomes an irrelevance, unless exercise becomes anearobic, which remains beyond reach. 

How far "normally" extends and wheter a ketogenic diet allows this to be sustainable are my two key questions. Clearly a perpetual fast is not the answer!

My 10 day fast and the unexpected and glorious side effect

‎For those of us with McArdle's we have to accept that there are limitations that the disease imposes on us, we have to compromise and find a way despite them. Each of us is different and each must learn to listen to their body to know where those boundaries are. Daily exercise is by common acceptance a requirement, my belief is that we need to continually push cautiously at the edge of our capacity and that we can improve the quality of life through doing so. On diet, however, opinion is divided some call for carbs before exercise, while others including the specialist i have dealt with Dr Slonim suggest high protein, but more of that later.....

In short we need to find our own path and not be scared to try things. For me this has meant an annual detox for the last 9 years in order to keep my weight under control. I wrote this on Day 9 of my current Water Fast:

Day 9 of what has become an incredible fast because I seem to have stumbled across an unexpected benefit - the ability to exercise what seems like "normally". 

Feeling somewhat euphoric as today I swam 100 lengths of a 25m pool and walked around 15k all before 11am and all without the need for pause and with few M issues. (still can't get up the 3 flights of stairs to my room "normally" though). 

As context I have not swam more than 50 metres without pause in the last year. This is my 7/8th fast, on previous occasions I have taken juice drinks 5 times a day. This time decided to go hard core and just stick to water only, in hindsight a top decision. After an initial restful 2 days I started to increase exercise and on about day 6 noticed I was going from stop to walking up a 500 metre hill with no issue, while on my daily long walks hills just did not seem like hills anymore, rather than avoid them I sought them out and relished the challenge‎. 

Then yesterday came my first 100 length swim after which I was convinced something special was happening.  

I discussed with Andrew Wakelin and our working theory is that my body is in Ketosis, getting energy from fat (plenty of it), all the while. Hence when I exercise I believe I am in effect already in second wind and using the optimal energy pathway for M people. 

For me this has been a remarkable few days and I plan to experiment to see how long I need to fast to see improvement. For the moment though am not putting my genie back in its bottle. The fast goes on and I plan to test myself on the treadmill on Tuesday to see if I can see measurable improvement there!

I must add a word of caution it is not normally recommended to exercise too hard while fasting while there are often side effects for several days. 

More            Research may well be done on this but for the moment wanted to share the                  ex        pe     experience.

Toda