The Adventure Begins, Riding with MS!!!!!!! This is going to be long one......

[Bytemi]

I was thinking that I would start this thread to help other people like me that have a physical limitation but want to ride and I will update this thread as I work towards finding my next Spyder, but let me start from the beginning:

In 2010, I had this crazy idea that I could ride a motorcycle despite the fact that I had Multiple Sclerosis. My husband thought I was a little off my rocker, but he is a great man and went with it. He gave me a $10,000 budget and said if you can find one, you can get it. I searched craigslist for months and every person I spoke too, said "No that is too low", then one day I woke up and about a 3 miles from house a 2008 Premier Edition Spyder appeared. I email the gentleman selling it. He explained that he received his Spyder for free as a Can Am Spyder Ambassador and if I was willing to keep people informed about the Spyder he was happy to accept my price. So Billie was born..... and my screw you MS and the customization began. Here is what we did:

1. We installed handle bar risers to bring them back to comfortable level so my legs wouldn't hurt
2. Mirror extenders so they were usable with my decreased vision
3. Heat redirection so all the engine heat was not hitting my legs
4. Add clips to the side for my cane
5. Installed throttle boss for hand weakness
6. Added blue tooth to my headset so Erik could tell me if I was in trouble
7. We used truck bed liner and repainted her flat black (OK this was just for looks and it turned out great!!!!!!!!!!!! Step by step instructions can be found in the forum some place with pictures). Stealth Billie was born.

It didn't take long before I had my motorcycle license and I was on the road!! But then summer hit and the heat started to kill my ability to ride. We tried evaporation vests, ice vests, an iced buff to cool my head, but nothing worked. Then my daughter was diagnosed with convergence insufficiency (that is a long story all its own, basically her left brain and right brain didn't know about each and she was having problems functioning) and we considered selling Billie to pay for her 48 weeks of Vision Therapy. I have always believed that when it comes to money, that I will help anyone that is truly in need, because when I am in need God always provides for me and this was not an exception, I actually won two jackpots at the casino that paid for her Vision Therapy in full. To keep her going in vision therapy we used Billie as incentive, if you do your home therapy and work really hard, you can ride on Billie with me and we can both say "you can't stop me!" together. Thanks to wonderful people on this forum we were able to make the following accommodations to make that possible:

1. Added a sports rack and back rest for little bylemi to keep her save
2. Added arm rests to keep her safe
3. Full gear and a blue tooth helmet so she could let me know how she was doing.
4. A fun trip to Kings Dominion on the Spyder that killed my legs for 3 days, but was so worth it!!!!!!!!!

In the end, she completed her 48 weeks of therapy and has actually become the poster child for the Vision Therapy group. It is still funny seeing her face on emails and mailings. LOL

So anyways, in 2013 because of the MS, I found that I was riding less. I would wake up saying no not today, I'm not up to it. In 2014, there was no riding at all, my legs hurt, I couldn't hold the clutch in, I didn't have the energy. I lot of excuses I know, but riding just stopped being possible. So we decided to sell Stealth Billie, she was going to waste in the garage. I was contacted by a very nice woman, who was deaf that wanted to ride, but needed some accommodations. Stealth Billie was perfect for her, so to pay it forward, we sold her for a price that the woman could afford and I gave her instructions and guidance on how to ride and directed her to this forum, she may be reading this post......

Well now we have figured out that the medications that were suppose to make the MS better, were actually making it worse and I told Erik, I want to ride again. He agreed but said we have to make some adjustments first. Here is what he said we need:

1. Has to be an RT, he feels the comfort will make it easier with my degraded spinal cord.
2. Has to be an SE, since my hand cannot hold the clutch in.
3. We have find a solution to keep my core temperature down.

So this weekend we did the following:

Went to Coleman's and I sat on one of the new RTs, he was the right, that back of the seat hit the perfect place, to relieve the pain that shoots down my legs due to the spinal damage. The handle bars were perfect and I could see out of the mirrors. The bike was setup perfectly for little bylemi to ride with me. The floor boards were a nice touch and I never had to worry about verifying where my feet were. The salesman looked at Erik like he was joking when said "we just have to attach an AC unit to her and find a used SE and it will be perfect!". He explained that I had MS and the salesman apologized. In the end, I knew more about the Spyder than the salesman and I told him "I am the living advertisement for Spyders and I talk to anyone that will listen about them".

So we ordered a Cool Shirt System with vest and cooling unit (this is the same unit the race car drivers use to say cool during a race) and it will be here by the weekend. Erik is going to take me out on his Harley and we are going to test the cooling system and make sure that it works. After that, I have my budget and I know what I am looking for, 2014 or new RT. I will be back on the road in no time.

Sam Mac, we have not forgotten you. We are waiting on the cooling vest, if it works, you will receive a PM and we will come and get that beautiful bike you have for sale. If it is meant to be, it will still be available, if not the search shall continue.

So the adventure has fully begun.

[Myron Ah]

Nice post. Glad things are going in a positive direction. I have limits too but they pale in comparison to yours. You inspire me to go any way I can to ride. My legs and shoulders went and now I'm retired on disability. If I remember you stated you did not try for that because the government denies this. I recommend hiring an advocate. I had multiple issues, some from a condition 30 years ago that lingered un known to me, Gilliam Barre' Syndrom. That and a spinal cord injury and arthritis wore my legs out. The advocates get a flat fee no matter how long it takes. they did all the paper work and fillings. Check it out. I hate the "disability" tag but I needed it and paid for it so it is what it is. Glad your riding.

[Bob Denman]

Adele,
I'm glad to hear that your plan is still "rock-sold", and moving forward!

[Bytemi]

Adele,
I'm glad to hear that your plan is still "rock-sold", and moving forward!

Well you know, I always have to have a plan!

[Bob Denman]

Well you know, I always have to have a plan!

[Chupaca]

Truely inspiring, you are a fighter and from the looks of things the whole family is in on this quest. I really hope you find all you need to get you out there so the whole family can ride again........

[Bytemi]

Nice post. Glad things are going in a positive direction. I have limits too but they pale in comparison to yours. You inspire me to go any way I can to ride. My legs and shoulders went and now I'm retired on disability. If I remember you stated you did not try for that because the government denies this. I recommend hiring an advocate. I had multiple issues, some from a condition 30 years ago that lingered un known to me, Gilliam Barre' Syndrom. That and a spinal cord injury and arthritis wore my legs out. The advocates get a flat fee no matter how long it takes. they did all the paper work and fillings. Check it out. I hate the "disability" tag but I needed it and paid for it so it is what it is. Glad your riding.

The problem is, it takes a lot of time to fight for disability coverage and during that time, you can't work. If I go out on disability now, it financially kill us. I'm not willing to take the risk that in 3 to 5 years they will approve me by then the house will be gone and everything else. That's why we started the online store, which is in my husbands name, it is something I can do from home and my hope is that I will get to the point that I can stop working but still not hurt our household finances. If that makes sense.

[MikeT]

Sam Mac, we have not forgotten you. We are waiting on the cooling vest, if it works, you will receive a PM and we will come and get that beautiful bike you have for sale. If it is meant to be, it will still be available, if not the search shall continue.
So the adventure has fully begun.

Interesting. Hope this works out for you.

[Bytemi]

Interesting. Hope this works out for you.

I know it may seem silly to wait for motorcycle air conditioning, but when you stop function if you overheat it is a necessity. I wish I didn't need it and I could just suck it up like Erik does.

[Kwalsh]

good luck with the plan and keep us informed how you are doing

[Motorcycledave]

That is a great plan, the cooling vests
work great,
Now get out there and ride and enjoy
Dave

[blacklightning]

Very inspiring story. I hope you are able to get the spyder of your dreams. And maybe (just maybe), since you are only 1 state away, I will see you on the road one day. God Bless.

[robtdonna]

Not silly at all, heat exhaustion is a huge problem when riding. Wishing you the best and keep on posting.

I just ordered something to try to beat the heat myself, from Duluth Trading Co, their Men's Armachillo Cooling Short Boxer Briefs and Men's Armachillo Long Sleeve Cooling Shirt. Reviews are good, fabric is is infused with microscopic jade that naturally dissipates heat for a cool-to-the-touch feel.

They also have Women's Armachillo shirts, pants, and panties, might be beneficial for you.

I know it may seem silly to wait for motorcycle air conditioning, but when you stop function if you overheat it is a necessity. I wish I didn't need it and I could just suck it up like Erik does.

[Bytemi]

Not silly at all, heat exhaustion is a huge problem when riding. Wishing you the best and keep on posting.

I just ordered something to try to beat the heat myself, from Duluth Trading Co, their Men's Armachillo Cooling Short Boxer Briefs and Men's Armachillo Long Sleeve Cooling Shirt. Reviews are good, fabric is is infused with microscopic jade that naturally dissipates heat for a cool-to-the-touch feel.

They also have Women's Armachillo shirts, pants, and panties, might be beneficial for you.

My husband is going to order the boxers and give them a try, thank you!

[lizmcg]

Duluth Trading Company products are great, although not cheap. Once you order, you'll get daily e-mails with various sales, so if you like the product, wait for an appropriate sale and save. FWIW. And good luck on your journey!

[Bob Denman]

My husband is going to order the boxers and give them a try, thank you!

It'll be okay, if the "Rider's Report", is not quite as thorough, as we're used to!

[marty1096]

I know it may seem silly to wait for motorcycle air conditioning, but when you stop function if you overheat it is a necessity. I wish I didn't need it and I could just suck it up like Erik does.

I love your spirit! I was diagnosed in Dec 2001. When I turned 60, 3 years ago, I decided I wanted to ride backseat. I did. Loved it and in Michigan the time of year was great because it was Sept Oct. cider and donut weather- cold...fantastic time...returned to AZ and wanted to ride, had to find a singles club, the haves and have nots...so as a havenot I got to ride backseat on trips with haves...nice liked that a lot. was doing that and looking online for a beau and someone pulled up to meet me (he had told me he had one)with this red fully dressed crossroads victory touring mc....hey I was hooked. bwahahahaha! he was tall he was big and he had a big bike...how could I lose...so here we are today living together. He encouraged me to go to MC school. I did. got my license and he bought me a victory vegas 8 ball last year....goodness talk about handling, speed, getting out the way of people...I loved it BUT almost every time I pulled up to a stop sign, over I would go...on the hwyway bar. Balance issues. I got tired of playing the damsel in distress and having guys stop and help me get it back up so I could ride away like a bat out of hell. It was over 600lbs. It was fun. I love my very first bike but eventually I had to come to terms with the fact I couldn't do it...I cant ride a bike I truly love ,how it looks, feels and rides....soooooooo and with him gone all the time trucking he said he was afraid for me, and if I was honest with myself, I was afraid also that I would screw up sooooooooo he took me to see a can am spyder..rt... intense red. I had a another problem with the vegas everytime I wanted to ride I had to get my courage up to hit the street...NOT HAPPENING with the RT. Instead of my car I am riding that mc out of my garage every time I can...market, gym, just to go get an ice cream cone...I love it...BUt the reason for this reply I have heat issues. I have questions. and I will tell you this...when its over 100 I don't ride here. Its got to be 100 or lower and sort of cloudy...1. are there moveable vents/louvers I can use on an RT? link? 2. do you have a link for the air conditioning you ordered (shirt) 2b Does it really keep you cool? 3. do you use a full face or half helmet...my full face is sooo heavy...looking for a lighter helmet. My name is Tina. I am pleased to meet you. You are a role model for me...thank you!

[Bytemi]

I love your spirit! I was diagnosed in Dec 2001. When I turned 60, 3 years ago, I decided I wanted to ride backseat. I did. Loved it and in Michigan the time of year was great because it was Sept Oct. cider and donut weather- cold...fantastic time...returned to AZ and wanted to ride, had to find a singles club, the haves and have nots...so as a havenot I got to ride backseat on trips with haves...nice liked that a lot. was doing that and looking online for a beau and someone pulled up to meet me (he had told me he had one)with this red fully dressed crossroads victory touring mc....hey I was hooked. bwahahahaha! he was tall he was big and he had a big bike...how could I lose...so here we are today living together. He encouraged me to go to MC school. I did. got my license and he bought me a victory vegas 8 ball last year....goodness talk about handling, speed, getting out the way of people...I loved it BUT almost every time I pulled up to a stop sign, over I would go...on the hwyway bar. Balance issues. I got tired of playing the damsel in distress and having guys stop and help me get it back up so I could ride away like a bat out of hell. It was over 600lbs. It was fun. I love my very first bike but eventually I had to come to terms with the fact I couldn't do it...I cant ride a bike I truly love ,how it looks, feels and rides....soooooooo and with him gone all the time trucking he said he was afraid for me, and if I was honest with myself, I was afraid also that I would screw up sooooooooo he took me to see a can am spyder..rt... intense red. I had a another problem with the vegas everytime I wanted to ride I had to get my courage up to hit the street...NOT HAPPENING with the RT. Instead of my car I am riding that mc out of my garage every time I can...market, gym, just to go get an ice cream cone...I love it...BUt the reason for this reply I have heat issues. I have questions. and I will tell you this...when its over 100 I don't ride here. Its got to be 100 or lower and sort of cloudy...1. are there moveable vents/louvers I can use on an RT? link? 2. do you have a link for the air conditioning you ordered (shirt) 2b Does it really keep you cool? 3. do you use a full face or half helmet...my full face is sooo heavy...looking for a lighter helmet. My name is Tina. I am pleased to meet you. You are a role model for me...thank you!

Hi Tina,

It is nice to meet you. If you send me a PM I will give you my email address, please feel free to email me any time. Sometimes with MS, support and an open ear helps more than anything else. I have a number of friends and we are each other support group! Just an offer!

As for your head heating up, get a buff (I know what the hell is a buff) here is a link from Amazon: https://www.amazon.com/s/ref=nb_sb_n...-keywords=buff, I have about a dozen different ones so I can match my mood. LOL. Anyways, wet it down with cold water and put it on your head (yes you look like a cancer patient, but whatever), it will prevent your head from overheating. Yes, the shirt really does work, it is a little expensive, but yes it works.
534370_4183189016608_2008885843_n.jpg

I always carry extra bottles of water on ice so if it drys out I can rewet it, but honestly just wetting it works too, the cold water just makes it last long. You can also get a frogtog and wet that and put in around your neck, the collar of your jacket will hold it in place. That will help to keep your core cool, plus the vest and the buff you shouldn't even notice the 100 degrees outside. When it comes to heat, I've learned to control it the best I can. My daughters love the fact that they get handed ice cold water and get the command dump it over my head (LOL) it makes them feel empowered! I hope this helps and please!!!!!!!! send me a PM. I am here if you need support, even if it is not Spyder related!

[Bytemi]

So they changed my medication again because the tremors are out of control. About week after starting the new medication I looked at Erik and said I don't want a Spyder, I can't do it. About a month later, Erik look at me and said stop taking the new medication, it is turning you into a vegetable, you just lay in bed and don't want to do anything. Stop it now!!!!!!!! He was right, I stopped working on store, lost interest in doing anything other than going to work and going to bed. The meds are out of my system now, so I am more active and trying to rebuild things that I let go.

I know that it might sound crazy. I work a full time job 40+ hours a week running an IT Department and I run an online store selling Vintage and Antiques, actually I'm expanding into a handmade section and making Rosaries, which I have to say a little difficult with the tremors, but they help me to train myself to control the tremors so I will continue down this road. We are also in the process of expanding past the Etsy store and we are going to start hosting online estate auction using our own Auction web site (not ebay). I am hoping that the auction site, plus the Etsy Store will give us enough that I stop the full time job and have some breathing room, since disability is not an option.

So am I still search for a Spyder, YES..........., but I never completed my test ride to see if I am physically capable of riding, so we are back on that road too.

So in summary, medicine is bad!!!!!!!!!!!!!! and I should have learned my lesson the first time. I need to control these tremors and MS all on my own!!!!!!

[Bytemi]

. Introducing Peanut!! I brought her home tonight after trying to walk out 3 times. So she is a 2012 RT Limited. She had 2001 miles, 2042 now. Yes I rode her home with my husband hovering. I will be redoing my training first in the court, the side roads and build to highway.

A couple questions/observations:

The shift is rough, jolting. Can someone help me?
I kept hitting the horn instead of turning off the turn signal.
The dealership knew nothing about the Spyder other than basic usage. I found the tool kit after much searching. He said he didn't have the GPS but I wonder if it is hiding somewhere.
There is a headset jack, why??
What else is different in the 2012 RT vs the 2008gs?
He only had one key, I guess I can't get another.

I cried for about 10 minutes on the way home. I was so excited.


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[ARtraveler]

. Introducing Peanut!! I brought her home tonight after trying to walk out 3 times. So she is a 2012 RT Limited. She had 2001 miles, 2042 now. Yes I rode her home with my husband hovering. I will be redoing my training first in the court, the side roads and build to highway.

A couple questions/observations:

The shift is rough, jolting. Can someone help me?
I kept hitting the horn instead of turning off the turn signal.
The dealership knew nothing about the Spyder other than basic usage. I found the tool kit after much searching. He said he didn't have the GPS but I wonder if it is hiding somewhere.
There is a headset jack, why??
What else is different in the 2012 RT vs the 2008gs?
He only had one key, I guess I can't get another.

I cried for about 10 minutes on the way home. I was so excited.


Sent from my iPhone using Tapatalk

Glad to see you did it.
Some of your questions:
The shift is rough, jolting. Can someone help me?: Shift points on the 998 engine should be about 5000 - 5500. You will find your sweet spot. The 998 still likes high revs when running down the road. Rough, jolting, is this the initial shift or all of them? Oil level can also be a culprit.

I kept hitting the horn instead of turning off the turn signal.
The dealership knew nothing about the Spyder other than basic usage. I found the tool kit after much searching. He said he didn't have the GPS but I wonder if it is hiding somewhere. There is a headset jack, why??

You will get the turn signals figured out pretty quick.

What else is different in the 2012 RT vs the 2008gs? You have a radio, cruise control, saddle bags, trunk, and better suspension. You can get another key from a dealer, but be prepared to pay around $150 or so.

We have a 2011 RT and it is very similar to yours. We also like it a lot. 24K miles and still going strong.

[Jimboregon]

Show this to your Harley friends. You might need to add a hitch to "peanut"!!

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[Gsebring]

Good for you, the more you ride the more you will get acquainted with it. I can't help with your questions because I have a F3-T, just happy for you.

[Jimboregon]

The shift should only be rough when going into Reverse or First. If you "speed shift" up thru the gears without shutting the throttle down, it shifts smoothly. If you shut the throttle off between shifts, it hesitates.

You'll get used to the turn signal placement. I keep hitting it when trying to blow the horn!

I never have found the tool kit....

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[Jimboregon]

And, you got a deal! Only 2000 miles? I just turned over 7800 on my '15 RT-S.

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