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Coffee Meltdown - Orewa Sunday

4/16/2013

Had a wee meltdown first thing this morning, making my filter coffee. I have a good mate who has unfortunately experienced the drawn-out passing of two people close to him over the last couple of years/since my diagnosis. He is increasingly uneasy around me, I guess as he sees a slow decline. My 'walk'/peg-leg of late hasn't helped. I really worry how he will handle my exit, longer-term - not because it's me especially, just that it is a third/another person he has known really well.

I guess I can help by continuing to hang around as long as possible. Maybe even for the impossible! That's the plan.

Funny, I was initially concerned for my other good mate who regularly drops in for a coffee (I have different friendships, some inhouse, some outhouse!). He doesn't like the sick or death subjects either. But one advantage of MND is the prep time you (and my mates/family) get. Instead of receiving my diagnosis back in '09, I could have been hit by truck. Every time this second mate drops in, he looks/sounds increasingly adjusted to things.

Please God, who/whatever you are, look after my mates. They all mean so well.

Moving on.... I'm going to do another half-marathon this Sunday (the 21st). Up at Orewa. I'll try to 'run' the whole way, or maybe it's better I say I'll do the 21kms as fast as I can, pushing myself at every step. The new 'style' can barely be called a run, stumbling has become a more accurate description. My peg-leg 20km training run-stumble last week was painful and demoralizing....so my plan for Sunday is that while it might be a similar pain-endurance mental exercise, from the turn-around point (10.5kms) I'm going to remind myself that each and every km I can maintain 100% effort is another victory on it's own.

Imagine this scoreline.... Me 21; MND 0.

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Not Keen On Their Shoes, But Love The Slogan

4/10/2013

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Sorry I haven't written lately. I feel in No-Man's-Land, my right leg getting stiffer/clumpier by the day, not knowing if it's the girlfriend (MistressND, or should that be MystressND...?), or simply old sporting injuries catching up, etc. Tuesday I decided it was time to face the music, and took myself off on a 20km trot. The right leg was like an inflexible peg for 5kms, very jarring, I must've looked like a wooden puppet out of control. Then I had 5kms of some bending of the right knee and ankle, pure bliss! Followed by the stiffness returning, the underside of my right foot scraping along the ground more and more.... I concentrated like crazy till around the 15km mark, and just couldn't get the foot to 'up and over', even stiffly.

I walked. FLuck.

Two things happened - one, I walked 'normally' (still with a sideways gait, but at least it was regular, no peg-as-a-leg); and two, leg muscles I didn't know I had immediately screamed out. From the first step. I guess because I must've been using different muscles to compensate for the peg-leg, muscles that hadn't ever seen 'action' before (given my new trotting style). But why was my walk/gait suddenly 'normal'?

I should add here that I had previously emailed my specialist with "Is it MND, or me subconsciously protecting a dodgy knee and ankle?" - and his reply was simply that "I would know when I needed a wheelchair". Yeah, I will, when I'm sitting in one...! Not his fault, he was trying to be helpful. And I'm a bit thick.

Anyway, back to a coupla painful steps after that 15km mark. I tried trotting again, the leg was rigid and the foot scraped. Back to walking - a far faster, more even option, albeit more sore. I got home in just over 3 hours.

I admit, the last km or two, as I cooled down, I was starting to do a whole-body seize-up. Very typical of MND. Felt a pathetic panic that I would have to ask someone to help get me home. Very grateful I hadn't taken my cellphone, and couldn't be a traitor to myself. And absolutely delighted to finally be unlocking my front door.

The hot shower was....ummm - long, slow, careful, 'delicate'.

What to do? I don't mean in analysing what is happening legs-wise, what will be, will be. Fundraising. If I do another half-marathon, I would want to get word out there (this time) a lot earlier than 4 days before the event! And I need to appeal to different folk, people I don't know, can't go back to the Rotorua donors with my hand out. Maybe make a Facebook page, etc, if I'm to have any chance of raising even another $500, let alone a grand (for the NF).

If I aim for say a month ahead, will I still be able to trot/walk 21kms by then? Can I say "I will", genuinely? Or more truthfully/realistically, just "I aim to"?

Writing this has (perhaps) been helpful. Nike have that wonderful slogan, "Just do it".

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The Battle For RightLeg

3/22/2013

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The mind-games this disease provides! My right leg has progressively become more an apendage than a flexible walking aid over the last couple of weeks. I can't feel any ache, cramp, or pain, yet the leg doesn't automatically lift and extend, or bend at the knee. Instead I'm swinging it up and over from the hip, like it's paralyzed or totally inflexible.

Is it my not-so-nice-mate MND winning over some bodily territory? Or simply the body being subconsciously protective, given the extra running and a dodgy knee? I have no idea - but it's easy to dwell on the former option. Certainly I was hauled off my Rotorua Half Marathon-high, and dunked into a seriously bad mood for 3 or 4 days earlier this week. But getting angry doesn't help either - in that case, the disease is winning. Bugger that. So the smile has had to return - I reckon I'm now the nicest--guy-with-a-limp in my street!

Daggy thing, I managed a 13km run yesterday in 1hr 45. The first 3 or 4 kms would've been slower than a normal person's brisk walk, as it felt like I was going to fall flat on my face with every step. I was set to flag it a number of times - but no point in dying wondering. And eventually the last 9 or 10kms went pretty sweet, the right leg finally 'up-and-overing' all by itself.

Then, soon as I finished, back came The Limp. Go figure. Mind Games. I do have the strong feeling though that if I want to raise more funds for the NF, I need to do so sooner rather than later.

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March 13th, 2013

3/13/2013

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While putting out my recycling bins at the letterbox early this morning, and picking up some broken glass I had found, I got a whiff of the baked Taupo grass. Maybe dry lawn smells the same everywhere, yet after living in glorious Taupo for 30 or more years, it automatically conveyed to me a sense of beachside, of summer holiday, of bare feet, of warmth, of smiles, and of good, good times with my kids, family, and close friends.

I was hit with an instant 'choke'. The walk down my long driveway with the recylcing bins had been my slowest, most hesitant and erratic yet. (Expletive!), I desperately want to hang on for as long as I can.

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The Panic Of Glue-Foot

3/12/2013

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Bloody hell! Still pinching myself - 2 hours 36 minutes! I was able to keep going the whole way, and no hang-over afterwards. Better still, at time of writing, $2,875 has been raised for the Neurological Foundation. I'm on Cloud Ten (better than Nine).

And Yes, I'm happy to admit my predicted 3 hours either means I'm a whimp (for thinking the worst) - or they measured the course incorrectly! My last practice run the weekend before (18kms) had averaged out at 8m 30sec kms, and I felt crook for 3 or 4 days after. At no time was I looking forward to the ROT Half, it was just something I 'had to' do. Putting my run into perspective, I was 350th out of 366 men and women, and 4th-to-last male home (2 of the 3 guys behind me were older).

If you're a MND'er who can't walk or run - or anyone who can't do so - I hope you read this post in the right light. After my diagnosis, I didn't go for a run for 4 or 5 months (not that I was a keen runner anyway, but I had usually managed a 6km run say once a month, maintaining fitness more by squash, tennis, the gym, etc) - but then when I finally got out there for a trot, it felt like each foot was glued to the ground. And once I got a foot raised, it felt as though it wasn't going to extend out and plant itself back on the ground in enough time to avoid a face-plant.

I was terrified. I had never felt anything remotely like that - the loss of bodily control (that I had previously taken for granted), and the absolute panic that I suddenly might no longer be this athletic, fit - and free - guy that I thought I was (yep, vain too).

So that is why I started this running-lark. In the hope that if I keep using my leg muscles I'll 'put off'/delay whatever comes next. I admit it took a while to realize just how lucky I was/am to still be able to run/shuffle/stumble - even when I take a tumble, in a full-picture sense I'm (bloody!) fortunate - and then longer-still to realize that maybe I could use it to do some good. But more on the 'mobility' subject later....

....today, before I bore anyone, I just want to point out that the $2,875 has come from a whopping 54 donors. You are good people. I have tried to identify each person to personally thank you (via text or email, you wouldn't understand my speech over the phone). However, if I'm unable to work out which person you are (e.g. 'Grant', I know 5 Grants, and I've already thanked one person who wasn't a donor, not a good look), or you are unknown to me, and I don't/can't contact you, please accept now my sincere THANKS.

We - donors and stumbler - have done OK, I reckon!

PS; Val, Robyn and Dave, very sorry to hear about MND and MS being part of your journeys. Keep going, plough ahead, I find that helps to say "Bugger You" to MND. Kia kaha.

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March 09th, 2013

3/9/2013

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Tomorrow is run time. I think I'm repeating myself, but the legs feel - unusual. Especially the right, it has lost it's natural lift of the foot, I can feel myself swinging my right hip up and over. I've always had a tight right hamstring, so all week I've been telling myself that is the hiccup, nothing else.

I've eaten an all-pasta dish tonight, drunk water all day, and trundled myself off to bed early on the last three nights. Sounds OTT for a (real) runner, but my last practice run wasn't pretty. 18kms last Saturday, 5 stops, cracker headache afterwards, dizzy and dry-retching until late Sunday. Was OK by Wednesday.

Far out, hard thing about 'publicizing' MND is that I sound like I'm moaning all the time. Please understand I'm not (remotely) trying to say 'poor me'. I accept I've got MND, it's simply the luck of the draw, and I'd far rather be the one with a serious disease than any of my family or friends. I'll deal to MND, or it'll deal to me, either way it's all a part of a journey I've loved - and still love.

Every minute of life, MND or no, is gorgeous!

OK, that off my chest, back to the 'moaning'.... My previous aim of 3 hours earlier (to do the 21kms) may have been a little optimistic. Not allowing for hills. Still, I'm going to go out and try to nail the first two-thirds (14kms) with seige-mentality; go and go and go, no thinking. If the last third of my trot turns out a little hard/more interesting, a few steps sideways, well, it's only 7kms. And I'll be the only competitor who can boast he really did 24kms (counting those sideways steps)!

Hey, we (donees and runner, a TEAM) have raised over $2,300 for the Neurological Foundation/research. HUGE! I've felt very emotional all day, as the dollars have continued to pour in (another symptom of MND called the 'labile effect' - you laugh or cry in an instant. Often very embarrassing, especially when you've got your Clint Eastwood face on). It's not pretty, more a snort that can produce missiles. Yuk.

Back to the money. Thank you, everyone. Got more to give? Love ya, http://www.fundraiseonline.co.nz/TT/

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Entering Half-Marathon (Rotorua)

2/21/2013

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I've entered to run the Half-Marathon in Rotorua on Sunday, 10th March. My legs have felt real funny/unusual over the last couple of weeks, and my balance seems awol. Of course, the worst passes through your mind, but then "Whatever" (not quite brave enough for "Bring it on!"). It may just be a bad spell soon to be followed by a good one....and if not, I'd better do this run while I can! The fatigue-thing I've been free of for the last 2 days, after a month or so in the shite, so who knows.

The course runs through the Redwood Forest (I believe) - the scenery should be good. It's all on logging roads (I think), so less falls, crawls, and backward steps than on the Tussock Traverse. Hopefully I can nail 3 hours.

If you're reading this, and are feeling generous, you could 'support' me - or any one of five Kiwis - by donating via http://www.fundraiseonline.co.nz/TT/. And if you think I look a tad shady, see a feature page on the Neurological Foundation website, http://neurological.org.nz/what-you-can-do/fundraising/tony-treloar-mndguy-running.

Cheers very much!

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February 09th, 2013

2/9/2013

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Thought I would write on a day when MND is harder work than usual. Hit the wall yesterday after threatening to do so all week. Was hoping I could win the mental battle, and get out there for one of my stumbling trots over the weekend. Sunday evening now, so No. What a friggin' wimp. The fatigue 'snot' won. Worse, I had to turn down two offers of a meal and company on Saturday night from both family and a friend, Far too fragile. Fatigue is a constant companion, I'm used to covering it up and pushing on; but when the offers came in, nothing was working - dropping things, staggering into doorways, drooling, desperately seeking sleep/relief but (when it's fatigue, rather than ordinary tiredness) sleep
never arrives. The internal flame was barely fluttering, and combined with the 'labile affect', an emotional mess was barely a blink away.

The guilt of turning down caring people, though, because of my own inabilities, is the pits. Rock and a hard place. At least today I can appreciate the good fortune of being placed in such a 'quandary' - it occurred to me some MND'ers who live by themselves maybe get no or few invitations.

If you have any illness, or MND itself, or simply feel lonely, write to me. I'm not the most 'regular' pen-pal, but I have good 'ears', and can flick you a few thoughts.

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January 26th, 2013

1/26/2013

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27th January (ignore the contrary Post signs, American timing I think)
Feeling orgasmic this morning! Plenty of "Ooh"s and "Aah"s with every step, as my leg muscles scream out. I got there though, 4 hours and 55 minutes, second-to-last guy home, and only 3 full-out biting-the-dusts. What a pain-in-the-ass the trizillion rocks were, as far as trying to crack out a reasonable time goes! I had to slowly reverse down rock faces, on all-fours; and hated all of the downhill sections because I couldn't put them to good use. It's the front-of-leg muscles that hurt most, from all that downhill braking. I had thought of wearing a helmet, and if I ever tried to improve my time I think it would be necessary - and maybe a full suit of armour. I pretty-much ran every metre I could, but that would be way-less than half the distance others can/could.

Still, what grand scenery - if you can walk/are mobile, I highly recommend either/both the Waihohonu Track (26kms from Tukino Rd carpark to Chateau Hotel, crossing the glorious Ohinepango Stream midway), or/and the Taranaki Falls Track (a 6km loop of stupendous scenery, out and back from the Chateau Hotel), all up at the Tongariro National Park.

Well done Angelo, my bus-seat partner on the way to the start-line, a great time of 3hrs 21mins. I need to touchbase with you to find that Mother Theresa quote (no joy Googling it this - sore - morning).

And thanks to the event staff, all concerned about my wobbly gait throughout the run, and at the finish line. I heard staff advising others that "I think he's deaf", which was a new twist on the impact a MND'ers slow, nasally speech, one that also lacked much puff after 26kms, makes on other folk.

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Start Line

1/23/2013

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M(i)ND Games

6th January, 2013
If I didn’t already love the world, and life, then perhaps I would say having a supposed death sentence hanging over you like Motor Neuron Disease brings greater appreciation for each (extra) minute on this good planet.

A definite benefit that MND does bring, though, is the massive challenge. I admit I'm unsure how to beat this disease, but I initially figured I could live with it. When first diagnosed in late '09 (after a year of tests), I immediately put in place a simple, simple plan - plenty of sun (surely ‘life’?), eat healthy, ditch all and any mental stress, while engaging in enough physical stress to remain fit and ‘able’/mobile (and to massage the ego?), and keep on smelling the smallest of roses…..

However, having now 'survived' 3 years – not record-breaking, I know, but tidy when you’re told death could be as little as 6 months away, and on average 2 years from the stage I was at – I'm keen push my boundaries a little. As in, try to do more, particularly ‘good’. Obligate myself a little more, bugger the stress. And in doing so, laugh at my Mistress MND - non-arrogantly - a lttle louder.

And that’s where the real challenge kicks in. Even before diagnosis, when I kept dropping things and my speech slowed-up, I felt plain knackered. A bit shit-house. Now, I often feel fully shit-house! As though I'm completely enveloped in this monstrous globule of dark, super-sticky snot or glue, spat by some huge and unwell overhead creature.

Every time I stand, that globule is stretched, but never broken - sill affixed in multiple places to the floor. Turn my head towards a small gap, suck in a breath of air. Concentrate, concentrate – walk straight, not as I feel.

So here begins the sporadic and I’m sure tangent-filled tale of very average Tony attempting to step up from his simple, pacifist, and purposefully private “I’m happy to live with MND, providing it doesn’t kill me” plan, to a (just to me) more arduous, 'naff the fatigue', and ‘public’ (by virtue of writing these thoughts) plan/challenge. If I help one other MND'er, directly or indirectly - or anyone - by doing this website, and keeping running, then cool, that's the aim/hope.

7th January, 2013
I have no plan to write every day, so relax reader! I just wanted to record that after writing the above entry yesterday, I ran 22 kms. Well, not quite – I walked a total of maybe 500 metres to a km while eating my banana and nut bar, plus drinking water, not being able to swallow safely while running (even at my pathetic pace). 3 hours, give or take a few minutes; around 8 and a half minute kms, better described as a stumble!

The last 3 kms were very, very painful; it took 30 minutes or so before I could swallow water without feeling as though I was drowning.

21st January, 2013
In between the 7th and today, I ran 18kms without stopping. Yeehah! It's taken the legs awhile to come right, but today I managed 13kms in 1hr45mins, despite it being bloody hot. And I got down some small gulps of water while still trotting. Handsome! So I'm eyeing up an event this Saturday called the Tussock Traverse, a 26kms jaunt from Tukino around to Whakapapa Village in the Tongariro National Park. Figure if I can trot for at least the more runable parts, and do my best over the rocky stuff, I'll crack 5 hours. Or thereabouts.

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Forward>>

Coffee Meltdown - Orewa Sunday

Not Keen On Their Shoes, But Love The Slogan

The Battle For RightLeg

March 13th, 2013

The Panic Of Glue-Foot

March 09th, 2013

Entering Half-Marathon (Rotorua)

February 09th, 2013

January 26th, 2013

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