TL1000s rider diagnosed with rare neuroligical disease. Can you help me?

**2fellas** · 18th January 2011, 11:15

hey everyone

this is not a poor me poor me thread it more about wanting to get this condition out there ....i dont even no if im in the rite place to post this lol...any way crashed my TL1000 last year on some oil on the road from hoons doing donuts on back roads and was diagnosed eith a rare brain disease its kinda like MS and Parkinsons mixed together so aaprt from needing bits to get tilly going again was looking at doing a ride late this year to raise awarness k i no your all curious bout its name so here it is .........idiopathic segmental dystonia ...ta da ....worst thing is .no cure , no treatment diddy zip really so i prob got 3 years of riding left in me ....please dont take this as a poor me story am just puttin my feelers out to get ideas etc

cheers mattman

0212164960

**JMemonic** · 18th January 2011, 11:27

Enjoy them while you can, umm it appears treatment can vary in effectiveness but looks like you are right, there is a limited riding time left.

**Banditbandit** · 18th January 2011, 12:07

Bugga .. enjoy what you can while it lasts ... remember we're not here for a long time .. we're here for a good time ...

**SMOKEU** · 18th January 2011, 12:31

I wish you all the best and hope that you can have many years of happy riding left.

**avgas** · 18th January 2011, 12:48

If you turn off that rumbling twin of yours, I am sure the involuntary movements will stop.
Other symptoms of owning a TL are; deafness, arthritis and dementia.

Take it easy big fella, and ask for the student nurses next time.......they are great

**tigertim20** · 18th January 2011, 15:37

Originally Posted by 2fellas

hey everyone

this is not a poor me poor me thread it more about wanting to get this condition out there ....i dont even no if im in the rite place to post this lol...any way crashed my TL1000 last year on some oil on the road from hoons doing donuts on back roads and was diagnosed eith a rare brain disease its kinda like MS and Parkinsons mixed together so aaprt from needing bits to get tilly going again was looking at doing a ride late this year to raise awarness k i no your all curious bout its name so here it is .........idiopathic segmental dystonia ...ta da ....worst thing is .no cure , no treatment diddy zip really so i prob got 3 years of riding left in me ....please dont take this as a poor me story am just puttin my feelers out to get ideas etc

cheers mattman

0212164960

by getting feelers out there, I assume you mean seeing what support you could find if you were to say, ride the perimeter of NZ to raise awareness?

First of all, write outa basic plan. how many kms in a day could you do, and what towns and cities would you stop into? youll want to stop in certain places to take collections and talk to people. write a basic plan.

Next, approach the LOCAL media, get a story in the paper, people will contact you if they can help.
Next, approach a local bike shop, maybe one you shop at regularly, and see if theyre interested in supporting you, lets say, with a free set of tyres, and a couple hundy towards fuel, and you advertise their name thankng them for support.

Basically, make a plan, advise media, then think about what poeple or businesses would benefit from supporting you.

Good luck.

Also, if you make a plan, try and get local areas to get involved, e.g, when you get to Otago, you might have a bunch of locals meet you, and escort you into town on bikes as well, and so on and so forth, this creates a presence, and poeple go, 'what the fucks goin on over there'?

**racefactory** · 18th January 2011, 16:45

Originally Posted by 2fellas

hey everyone

this is not a poor me poor me thread it more about wanting to get this condition out there ....i dont even no if im in the rite place to post this lol...any way crashed my TL1000 last year on some oil on the road from hoons doing donuts on back roads and was diagnosed eith a rare brain disease its kinda like MS and Parkinsons mixed together so aaprt from needing bits to get tilly going again was looking at doing a ride late this year to raise awarness k i no your all curious bout its name so here it is .........idiopathic segmental dystonia ...ta da ....worst thing is .no cure , no treatment diddy zip really so i prob got 3 years of riding left in me ....please dont take this as a poor me story am just puttin my feelers out to get ideas etc

cheers mattman

0212164960

Fuck me....

Today I was contemplating buying a LS2 cheapy or a proper SHARK helmet, I know what I'm getting now- thanks mate.

I wish you all the best in the world for a recovery and future.

Have a good one mate, thanks for waking me up.

**racefactory** · 18th January 2011, 16:46

Originally Posted by Banditbandit

Bugga .. enjoy what you can while it lasts ... remember we're not here for a long time .. we're here for a good time ...

You can say that again. Hard out.

Never say die...

**crazyhorse** · 18th January 2011, 17:14

No one knows whats around the corner in life - just make the most of what you have got - and by the way - I love TL's - they're great bikes.

Sorry, I know I didn't answer your question - hope someone can

**Teflon** · 18th January 2011, 20:07

What parts do you need for the TL?

**\m/** · 18th January 2011, 20:47

Hope you can get the widowmaker running again soon. Enjoy life as much as possible while you still can!

**2fellas** · 19th January 2011, 14:14

Originally Posted by Teflon

What parts do you need for the TL?

mate

need radiator..brake pedal and bracket and front and rear fairings

not alot aye hahaahhaaha

**Edbear** · 19th January 2011, 14:57

Originally Posted by crazyhorse

No one knows whats around the corner in life - just make the most of what you have got - and by the way - I love TL's - they're great bikes.

Sorry, I know I didn't answer your question - hope someone can

Wot she said!

Sorry to hear your bad news, you know we're all for you on here! I found this link, but I know you and hopefully your Doc will be doing research to find the best possible way to treat your condition!

http://www.neurology.org/content/61/4/546.abstract

**Teflon** · 19th January 2011, 16:33

Originally Posted by 2fellas

mate

need radiator..brake pedal and bracket and front and rear fairings

not alot aye hahaahhaaha

Had a quick look around but I could only find a pair of front disks from my R. If i had any of those parts I would send them to you.

Theres a few radiators on ebay, around $175 nz thats including shipping

http://www.findapart.com.au/

**2fellas** · 19th January 2011, 17:39

Originally Posted by Teflon

Had a quick look around but I could only find a pair of front disks from my R. If i had any of those parts I would send them to you.

Theres a few radiators on ebay, around $175 nz thats including shipping

http://www.findapart.com.au/

cheers mate for that