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!

[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.

[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........

[ARtraveler]

Please keep us updated. You are an inspiration.

[sealfloorboards]

What a great story, similar to mine in a number of ways. I contacted a disease called GILLIAN BARRE At age 35 in 1980. I was totally paralyzed for four months. Recovery was slow and difficult and I never fully regained my movement, balance and coordination. 10 years ago, at age 65, decided I wanted to ride a motorcycle. I finally got my endorsement on a Honda 250 scooter. My friends that I was crazy, too old, and to disable...BS! I moved up to a Honda SilverWing 600 cc scooter and loved it until I saw a 2008 CAN AM GS SE5. that was a game changer. However, because of my disabilities I did not sit well on my new 2009 RS SE5. The foot pegs too far back, hard on my knees, and difficult to get on. the handlebars are too far forward and I needed a taller windshield, otherwise I love It. that was the beginning of my "Ride In Comfort" concept. I added 5 inch handlebar risers, a 24 inch tall windshield, and invented the Seal Floorboard. Now with my disabilities I was able to ride long distances very comfortably.

Since that time, in 2009,, I have designed floorboards for the RS, RT, and now F-3. my Seal Floorboards were the first floorboard made for the CAN AM Spyder and have been the Industry Leader since that time. Seal Floorboards have helped thousands of older and disabled riders to continue riding and enjoying the freedom that only comes from riding a bike. There are lots of stories out there of people, like you and me, with disabilities. Most thought their riding life was over, now they can enjoy their CAN AM Spyder. I'm luck to be one of those fortunate ones.
Ride in Comfort,
John

[Myron Ah]

That makes perfect sense. Each situation is different. We do what we have to when we have to. I remember telling customers I should be riding my motorcycle instead of working. But if I didn't work I wouldn't have the motorcycle! One fortunate thing was being able to pay it off after closing up the business early in the year and getting the taxes back from quarterly payments made earlier. You keep going. Keep posting. Inspiring you are.

[Bytemi]

The Cool Shirt System is arriving today!!!!!! I will post pictures and information after it is received.

Also, Jason from Colemans called me and sent me pictures of a 2014 RTS with under 3,000 miles that they just received in stock. He has not been able to to provide a price yet and the pictures have Buy Out, written the windshield, not exactly sure what that means, but whatever. He said it needs to go to service and then he would let me know. My fingers are crossed. It is stealth gray.

[Bob Denman]

Fingers Crossed.gif for you!

[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!

[Bytemi]

I got the cool shirt system last week and Erik took me out on the Harley to test it out on Saturday. We rode for about 30 minutes to go to lunch and then back home. The system worked!!!! Erik said he was sweating and I was conformable. I wasn't hot, or cold, just comfortable.

2016-06-25 11.12.14-1.jpg

The only negative thing I can say about the system is it builds condensation fast, so you shirt does get wet. See pictures below, I know the one looks obscene. Also when you disconnect the hoses, water that remains in the tubes pours out. Being aware of that, I know not to hold it in my lap when disconnecting from the unit. LOL
2016-06-25 12.57.10.jpg2016-06-25 12.57.20.jpg

We did find a new complication and I don't know if was just the Harley or it will be all motorcycles, but 5 minutes into the ride my hip went into a spasm. I spent yesterday in bed because it hurt too much to walk. So we are adding another step into this process. I am going to rent a Spyder for a day and see if I have the same issue. I found a place in Fairfax, about 30 minutes from my house that allows daily rentals for $260 a day. If you have a better suggestion, I am open to ideas.

So the process continues and I am moving today but still sore.

[Bob Denman]

I'm glad to hear that it worked so well for you!
As far as the hip: it might have just been the Harley's seating position, but it never hurts to investigate it fully.
Let us know how your day on the rental ride goes!

[ARtraveler]

I got the cool shirt system last week and Erik took me out on the Harley to test it out on Saturday. We rode for about 30 minutes to go to lunch and then back home. The system worked!!!! Erik said he was sweating and I was conformable. I wasn't hot, or cold, just comfortable.

2016-06-25 11.12.14-1.jpg

The only negative thing I can say about the system is it builds condensation fast, so you shirt does get wet. See pictures below, I know the one looks obscene. Also when you disconnect the hoses, water that remains in the tubes pours out. Being aware of that, I know not to hold it in my lap when disconnecting from the unit. LOL
2016-06-25 12.57.10.jpg2016-06-25 12.57.20.jpg

We did find a new complication and I don't know if was just the Harley or it will be all motorcycles, but 5 minutes into the ride my hip went into a spasm. I spent yesterday in bed because it hurt too much to walk. So we are adding another step into this process. I am going to rent a Spyder for a day and see if I have the same issue. I found a place in Fairfax, about 30 minutes from my house that allows daily rentals for $260 a day. If you have a better suggestion, I am open to ideas.

So the process continues and I am moving today but still sore.

A suggestion for combating hip spasms (ask me how I know). Bring along a couple pads to play with concerning height. If you have a sheepskin or an AirHawk--they can be helpful. I have used one or the other, or both, depending on the "pain of the day." Most times, one of the combinations will allow me to do a daily ride. You get the hip positioned just right--and sometimes you are good to go.

[Bytemi]

A suggestion for combating hip spasms (ask me how I know). Bring along a couple pads to play with concerning height. If you have a sheepskin or an AirHawk--they can be helpful. I have used one or the other, or both, depending on the "pain of the day." Most times, one of the combinations will allow me to do a daily ride. You get the hip positioned just right--and sometimes you are good to go.

Thank you, I will look into that. The part that sucks is once it starts it doesn't stop until the MS has decided I have paid enough for whatever stupid thing I did to make it start to begin with!