Hello Spyder Lovers Family, Update for Bytemi and Little Bytemi

[Bytemi]

Good Afternoon Spyder Lovers Family

I have been gone so long, I'm sure most of you don't know me. The last two years have been very eventful. The last time I posted it was to let everyone know that we were selling Stealth Billie (by the way the truck bed liner held up great, never faded, never flaked, it was an awesome idea to repaint Billie a flat black). Seeing the inevitable in site "disability" I opened an online store selling antique and vintage items. I figured if I was not able to work outside the home, I could work inside the home. Now my little store in no way replaces my salary, but it is something and we are using the proceeds from the store to pay down our upside mortgage, to prepare for losing my income. The MS has truly been kicking my ass. A typical day for me is going to work and coming home and going to bed. I will grab my laptop and work on store and I've become an expert at bed photography! Over the last year this has only gotten worse, the tremors make it appear that I am having a seizure all the time, I can't walk or stand for any long period of time and to top it all off, I lost my ability to think.

I had a full cognitive evaluation done last July and found that I am smartest stupid person earth! When I was first diagnosed in April of 1996, they did a baseline cognitive test. At that time I was in upper 97% of the US for IQ. In July we found that in when it came to visual memory I was in the lower 2% and for problem solving I was in the upper 82% of the US. This may not seem like a big deal, but to lose that much of your IQ in a couple of years is awful, I feel stupid most of the time.

Over the course of the 2 years, they put me on so much medication, I couldn't even keep it straight. I do however have the smartest dog on earth and she won't let me leave the bathroom in the morning without grabbing my pills, so I could go to work. About 2 months ago, my husband and I sat down to talk about the options, we were seriously considering disability. The problem that we faced was that the company that I work for stopped carrying short term disability and their long term disability no longer covered me for various reasons. Social Security disability has not approved a person with MS since the Affordable Care Act went into affect (my neurologist gave me this piece of information, he can't get anyone approved).

So I had a crazy idea that maybe I just needed to do more. Maybe if I pushed a little harder I would start making it further. So I started leaving work 30 minutes early 3 times a week so I could do PT. When I started I was able to use elliptical for 1 minute and 17 seconds before my legs gave out. It been two months, and I am now at 20 minutes and 26 seconds. But my fatigue is still killing me and cognitive issues are getting worse. I got lost driving home from work. I've worked at the same company for 10 years and I got lost and didn't know where I was. That tipped me over the edge and I started evaluating when the MS worsened. It all started with one pill, that lead to another pill, that lead to another that lead to another pill...... So two weeks ago, I stopped all my medications but the one that I have been on for 3 years.

My energy is back to normal (for me), Erik said I'm repeating myself less and tests my memory without my knowledge. Like telling me I didn't do something that I did actually did and I am able to give him a blow by blow of how I completed the task and what was done with it. The limp has subsided and my legs don't get tired as quickly. The tremors are present, but manageable.

Having said all that, I'm starting to think that I can ride again. There are a couple of accommodations that I need to work out:

1. My right hand is weak and it hurts to hold the clutch in, so we will need a semi automatic.
2. Cooling, I need to find a way to add Air Conditioning to my jacket so I can be geared and not overheat.
3. Finding the right Spyder, Erik thinks a touring RT would be the best and make me comfortable.

I can't believe that after two week of being off the meds, have stopped what I thought was the progression of the MS. Isn't that weird, the drugs that were suppose to control it, made it worse.

As for Little Bytemi, she has totally over come the Convergence Insufficiency. She is a straight A student and in the advanced Math and Science program at school. She was doing Algerbra in 6th grade. We are so proud of her. She said she sees me struggle and not give up and if I can overcome MS she can overcome anything. She is right, her only limitation is what she doesn't fight against. I know that I have said this before, but I will say it again, thank you to everyone that supported her and us while she was in vision therapy.

This forum is awesome!!!!!!!! and it feels really good to be back here talking about getting back on another Spyder. OK it feels great to be on a computer that is not store or work related. Nothing can replace Stealth Billie (she went to a very nice deaf lady that needed the accommodation we had added for my poor sight).

[Fatcycledaddy]

:bowdown::bowdown:You are truly an inspiration!! I will keep you in my prayers that all continues to go well! :pray::pray:

[Bytemi]

:bowdown::bowdown:You are truly an inspiration!! I will keep you in my prayers that all continues to go well! :pray::pray:

I'm not an inspiration, I am working with the cards that I have been dealt and bluffing as much as humanly possible!!!!!!!!!!!!!!!!:shocked:

[ARtraveler]

Was wondering about you. Thank you for the updates. You are an inspiration to all.

Our thoughts and :pray::pray: will go with you.

[Chupaca]

So good to hear from you and how things have gone since you faded away from here. You are amazing and I can tell you I did the same with my mom with her demensia/alzhimer don't know which but she never took another pill till she passed a year ago this month at 93. I always fought with her doctors cause they would all day "because of your age/condition you should take ...." I said they should check her condition cause she never needed them. I hope you can find the right spyder and can get back on the open road cause it will be one pill even I would prescribe.....:thumbup: keep it up :clap::clap:

[Tango]

So good to hear from you. Glad things are looking up for you. Some of us do remember you. I guess that makes us forum veterans. We are pulling for you. :thumbup: Tom :spyder:

[oldgoat]

You won't know me, but I used to read your posts & wonder how you got through each day. You are one strong lady!

There is a young lady across the street from me whose husband left her after they adopted 2 baby girls from China about 13 yrs ago. She has developed MS & sadly I can see her decline from month to month. She is a teacher at the school my grandchildren attend. When she gets home in the afternoon it takes all her strength to climb the 2 steps to her front door & she can hardly bend her knees as she slowly walks.

I thank my lucky stars I am still mobile at almost 77 & will try not to complain about my aches & pains.

All the best to you & I hope you will be able to ride a Spyder again in the near future.

[Bob Denman]

:D Hey, Old Friend!!
I was worrying about you, since I hadn't heard from you in a while. I hope that you'll stay in touch with us from now on! nojoke
I'm glad to hear that you're "making it work"! :firstplace: :2thumbs:

An RT would be more comfortable for you, and here's some info about a company that sells a portable air-conditioning unit:
http://entrosys.com/

Can't wait to hear more... :thumbup:

[vampyregirl]

I remember you as well!!! Nice to see an update from you!!! I hope you are able to get back on a Spyder soon!!!

[Bytemi]

You won't know me, but I used to read your posts & wonder how you got through each day. You are one strong lady!

There is a young lady across the street from me whose husband left her after they adopted 2 baby girls from China about 13 yrs ago. She has developed MS & sadly I can see her decline from month to month. She is a teacher at the school my grandchildren attend. When she gets home in the afternoon it takes all her strength to climb the 2 steps to her front door & she can hardly bend her knees as she slowly walks.

I thank my lucky stars I am still mobile at almost 77 & will try not to complain about my aches & pains.

All the best to you & I hope you will be able to ride a Spyder again in the near future.

It never occurred to me that the MS Meds could make me worse, they are suppose to stabilize not progress. Funny my first husband left me because I got healthy and preferred me sick with no friends, but that is whole other story. Erik likes it when I improve and get stuff back!

[Bytemi]

:D Hey, Old Friend!!
I was worrying about you, since I hadn't heard from you in a while. I hope that you'll stay in touch with us from now on! nojoke
I'm glad to hear that you're "making it work"! :firstplace: :2thumbs:

An RT would be more comfortable for you, and here's some info about a company that sells a portable air-conditioning unit:
http://entrosys.com/

Can't wait to hear more... :thumbup:

BOB!!!!!!!!!! The wonderful friend that introduced me to the Spyder Lovers (see I still have some wits about me :D). I will do my best to stay in touch. I looked at those Air Conditioning units but they are sold out for 2016 and they are $1,500. If you think those are the best option, then I will have to leave room in my budget for one and the new Spyder. :D I think we have decided that RT SE5 or SE6 are the best option, now to find a reasonably priced one that I can work into the budget.

[oldgoat]

https://www.indiegogo.com/projects/miclimate-a-wearable-air-conditioner#/

http://www.veskimo.com/

[PrairieSpyder]

I'm glad you are doing better, and without the meds! Go figure! I hope you'll find an RT you like really soon and don't forget to post some pics!

[Yazz]

Bytemi, I remember you very well. What I most remember most about you is your adventurous, fighting spirit! Glad Little Bytemi is doing well in school now and happy you're doing better.

Sometimes the doc doesn't know best...

[SteveLaoyster]

This is one way you might be able to stay cool while riding.

http://www.revzilla.com/motorcycle/revit-liquid-cooling-vest?utm_source=product&kwd=&gclid=CKfemdmXl80CFYkkgQodHUsPfg

[SteveLaoyster]

Or.... http://www.veskimo.com/

Opps! Just saw this one was already mentioned. Looks like this one might work real good.

[bmccaffrey]

You have mastered a lot of hurtles in your life and continue to challenge.
Your attitude and heart are truly inspirationl.

GOD BLESS YOU AND KEEP FIGHTING:pray:

[Ron2andia]

Welcome back and keep up the good fight.. Hope you find your Spyder soon!

[MikeT]

I think we have decided that RT SE5 or SE6 are the best option, now to find a reasonably priced one that I can work into the budget.
You might want to look at the For Sale section of the Forum. There are some 14 and 15 listed.

[Kwalsh]

i am new to this forum so i dont know you but my wifes best friend struggles with MS and it is horrible to watch when she struggles with her 2 young kids who dont understand,good luck on the new adventures and please keep up the fight it is a reminder that you can do almost anything if you want it

[Bytemi]

i am new to this forum so i dont know you but my wifes best friend struggles with MS and it is horrible to watch when she struggles with her 2 young kids who dont understand,good luck on the new adventures and please keep up the fight it is a reminder that you can do almost anything if you want it

I taught both of my girls about MS at about 3 or 4, by giving them MS for a day, ok the goal was a day but neither of them made it longer than an hour. Basically I simulated what I experience and asked them to keep their schedule. Add weights to both legs and arms, wrapped their ribs and stomach to constrict movement, put clear lens glasses on them with blinders so they could only see straight a headed and finally put different size shoes in their feet. One too big, one too small. The day started with me asking them to go up and down the stairs 5 times. The struggle started immediately. They were perfectly safe, I watched them closely and caught them when they fell or tripped. They both gave up quickly and said they were sorry. My oldest forgot these lessens about 15, so we did it again but I didn't safe guard her and added three layers of winter cloths. She made it up and down the stairs twice before giving up.

[Bytemi]

You might want to look at the For Sale section of the Forum. There are some 14 and 15 listed.

I did look at the for sale section but they are all too far and I have to have a cooling solution solution in place before the purchase. I don't want to watch news and hear 80/90 or worse 100... degrees and say well no riding today....

[Bytemi]

Welcome back and keep up the good fight.. Hope you find your Spyder soon!


I I found a brand new 2013 RT-S about 2 1/2 hours away at a Harley dealership. Erik thinks it is two far and I'll have difficulties getting her home safely. The heat has started here so we are focusing on cooling, then Spyder. :)

[murphybrown]

Welcome back to posting here....see others have posted about the Veskimo, cooling system....seems to be the best out there. There are several Spyder ryders that have the system. As far as the meds...unfortunately that is the way of our modern medicine and big pharma industry. Welcome back and keep us posted as you. :yes::yes:

[Bob Denman]

I I found a brand new 2013 RT-S about 2 1/2 hours away at a Harley dealership. Erik thinks it is two far and I'll have difficulties getting her home safely. The heat has started here so we are focusing on cooling, then Spyder. :)

If it's a brand new 2013: make sure that all of the necessary recalls have been done on it... :thumbup:
Happy Shopping! :thumbup:

[Pirate looks at --]

This is one way you might be able to stay cool while riding.

http://www.revzilla.com/motorcycle/revit-liquid-cooling-vest?utm_source=product&kwd=&gclid=CKfemdmXl80CFYkkgQodHUsPfg

So this reall works well and at just over $100.00 it is reasonable. They also make wraps for the neck and wrists. Note, I have found that when it it REALLY HOT 100+. This works best with a jacket with vents in the front and back. With my Mesh jacket it drys out too quickly. With just th vents working it stays wet longer and cools longer..

[robertl]

Hi Bytemi. I am new around here so nice to meet you.

My wife was diagnosed last year. Her mom also had m.s. so not sure she was all that surprised. It has been tough to see her lose some of her abilities, mostly the thinking. She's been unable to do her technical job and out on leave. She tried Tecfidera first but it gave her crippling chest pains. They gave her something else for fatigue but don't recall what that was. It definitely helped but not good to use long term. I convinced her to lay off the stimulate and cut back on the coffee so her afternoon crashes seemed to lesson. She's on Augagio for a few months now and no chest pains so far. She's had a sinus infection for 4 months so that's been a struggle but that's being fixed tomorrow with surgery.
She's also had vertigo the past 4-6 months and hoping that gets at least a little better after the sinus issues clear up.
Has hearing loss too so that will require hearing aids.
I traded her sport bike in on the Spyder so she didn't have to worry about balance but mostly she just rides on the back but at least we still get to enjoy riding. She said riding on the back is relaxing which is import for mental health.

In all the research I've done, it seems exercise is the best therapy. Many swear by yoga because it helps with balance and focusing on muscle control. One person said working out 30 minutes in the morning gave her another 3-4 hrs of energy in the afternoon/evening. Wife cannot drive (vertigo) so she cycles around, usually 25-50 miles per week if she's well (she out does me regularly).

Our primary care doctor said something I wish more doctors would say, "there is no disease that recommends rest". Keep moving, however you can. :)

There were a couple of posts recently about riding in the heat.
Most people seem to prefer mesh gear with tshirts or cooling/exercise shirts under or cooling vest. Cyclegear has an affordable cooling vest.
Someone posted this link also: http://www.veskimo.com/

We live in FL so riding is usually early morning or late evening. Neither of us seem to be taking the heat all that well lately so considering going back to the Nashville area.
She doesn't like the passenger seating position much on the F3 but hasn't ridden on one yet. We'll be doing that in October at a demo event. I found the heat control is much better with the radiators out front instead of by my feet on the RS. From what others have said the newer RTs have improved heat management.

Good luck and hope you find a solution that works for you.

Robert

[MikeT]

If it's a brand new 2013: make sure that all of the necessary recalls have been done on it... :thumbup:
FYI: the 2013 has the 998 V-Twin motor in a chassis meant for the 1330. This caused many "heat issues". The ordered fix was putting increased venting for the underneath of the tupperware. Something to consider when shopping, the maintenance cost of the 1330 motor('14, '15 &'16) is signifigantly less than on the 998 motor. Good Luck.

[Bytemi]

Hi Bytemi. I am new around here so nice to meet you.

My wife was diagnosed last year. Her mom also had m.s. so not sure she was all that surprised. It has been tough to see her lose some of her abilities, mostly the thinking. She's been unable to do her technical job and out on leave. She tried Tecfidera first but it gave her crippling chest pains. They gave her something else for fatigue but don't recall what that was. It definitely helped but not good to use long term. I convinced her to lay off the stimulate and cut back on the coffee so her afternoon crashes seemed to lesson. She's on Augagio for a few months now and no chest pains so far. She's had a sinus infection for 4 months so that's been a struggle but that's being fixed tomorrow with surgery.
She's also had vertigo the past 4-6 months and hoping that gets at least a little better after the sinus issues clear up.
Has hearing loss too so that will require hearing aids.
I traded her sport bike in on the Spyder so she didn't have to worry about balance but mostly she just rides on the back but at least we still get to enjoy riding. She said riding on the back is relaxing which is import for mental health.

In all the research I've done, it seems exercise is the best therapy. Many swear by yoga because it helps with balance and focusing on muscle control. One person said working out 30 minutes in the morning gave her another 3-4 hrs of energy in the afternoon/evening. Wife cannot drive (vertigo) so she cycles around, usually 25-50 miles per week if she's well (she out does me regularly).

Our primary care doctor said something I wish more doctors would say, "there is no disease that recommends rest". Keep moving, however you can. :)

There were a couple of posts recently about riding in the heat.
Most people seem to prefer mesh gear with tshirts or cooling/exercise shirts under or cooling vest. Cyclegear has an affordable cooling vest.
Someone posted this link also: http://www.veskimo.com/

We live in FL so riding is usually early morning or late evening. Neither of us seem to be taking the heat all that well lately so considering going back to the Nashville area.
She doesn't like the passenger seating position much on the F3 but hasn't ridden on one yet. We'll be doing that in October at a demo event. I found the heat control is much better with the radiators out front instead of by my feet on the RS. From what others have said the newer RTs have improved heat management.

Good luck and hope you find a solution that works for you.

Robert

Hi Robert,

I tried Tecfidera, had intestinal crapping that was dilating. Lost 40 pound in a month because I was unable to eat or drink any anything. My husband is concerned about the weight of the veskimo, he thinks I won't be able to use it long term without making the fatigue worse. I take Nuvijil for the energy issues and it is a life safer, but I had to quit smoking because it spiked my blood pressure. I had been on Aubios for the last 2 years and that is the drug, that lead to other the other drugs and what appeared to be progression. As for the vertigo, if you don't mind me asking, does she take Valium every 4 hours? Valium is the ONLY thing that I have found that stops and controls the vertigo and allows you to function. It takes about a week to get use to, but then the groggy feeling goes away and you can function normally. :D Just a suggestion to help her get back to driving and working if that is what she wants. :D

Adele

[Bytemi]

FYI: the 2013 has the 998 V-Twin motor in a chassis meant for the 1330. This caused many "heat issues". The ordered fix was putting increased venting for the underneath of the tupperware. Something to consider when shopping, the maintenance cost of the 1330 motor('14, '15 &'16) is signifigantly less than on the 998 motor. Good Luck.

Thanks for the information so I am now looking for 14', 15' or 16' RT SE6. See I am getting closer to what I need with every post. :yes:

[Bytemi]

By the way Little Bytemi is so excited at the idea that we can ride together again she keeps asking, have you found one yet???

It was a great bonding experience for us and it got through a very tough time in her short little life. I think it also showed her that when you are handed something you don't you can handle, you just have dig down and find the strength to continue.

[MikeT]

Thanks for the information so I am now looking for 14', 15' or 16' RT SE6. See I am getting closer to what I need with every post. :yes:
How far are you from Galax, VA??????? There's a low mileage '14 RTL for sale:19,000.00. Posted by Sam Mac on 5/13 but he had a reply posted on 6/6.
Just looked the distance between cities up. 315 miles.Too far???????

[Bytemi]

How far are you from Galax, VA??????? There's a low mileage '14 RTL for sale:19,000.00. Posted by Sam Mac on 5/13 but he had a reply posted on 6/6.
Just looked the distance between cities up. 315 miles.Too far???????

6 hours!! Lol, the perfect one will appear just like Billie. I searched for two months. Too far, too expensive, bad color... Then out of the blue there she was two miles from my house.

[d.o.spyder-rts]

Bytemi, Welcome back! I've just started to frequent the site more and was wondering how you were. Thanks for the update, you may not think you are an inspiration, but you truly are. It's great to hear little Bytemi is doing well also. Please don't be a stranger and keep us updated. Dale

[Bytemi]

OK, I found this cool site that has cooling options for people with MS:

http://coolshirt.com/product-category/ms-products/

They have good reviews. I think I found my cooling option!!!!!!!!!!

[robertl]

Hi Robert,

I tried Tecfidera, had intestinal crapping that was dilating. Lost 40 pound in a month because I was unable to eat or drink any anything. My husband is concerned about the weight of the veskimo, he thinks I won't be able to use it long term without making the fatigue worse. I take Nuvijil for the energy issues and it is a life safer, but I had to quit smoking because it spiked my blood pressure. I had been on Aubios for the last 2 years and that is the drug, that lead to other the other drugs and what appeared to be progression. As for the vertigo, if you don't mind me asking, does she take Valium every 4 hours? Valium is the ONLY thing that I have found that stops and controls the vertigo and allows you to function. It takes about a week to get use to, but then the groggy feeling goes away and you can function normally. :D Just a suggestion to help her get back to driving and working if that is what she wants. :D

Adele

Thanks Adele. I'll definitely let her know. As with many diseases it takes time to figure out what works best for each person.

[MikeT]

Thanks for the information so I am now looking for 14', 15' or 16' RT SE6. See I am getting closer to what I need with every post. :yes:
Since travelling outside your local area is not an option, have you visited Coleman Powersports to see if they have any '14s or 15s in their inventory?

[Bytemi]

Since travelling outside your local area is not an option, have you visited Coleman Powersports to see if they have any '14s or 15s in their inventory?


I hate colemans I'm search craigslist and cycle trader. I can travel a little bit not 6 to 10 hours.

[sandeejs]

Good Afternoon Spyder Lovers Family
The MS has truly been kicking my ass.
I tried to send you a PM yesterday, but apparently I did not succeed. I also have M.S. It's part of the reason I switched to the Spyder. The older I got, the further away the ground seemed to get when I was on 2 wheels. (Plus I needed more storage than I had on the Honda Shadow.


A typical day for me is going to work and coming home and going to bed.
Know the feeling. When I was working, I'd come home and sometimes have to take a nap to have the energy to go to bed.

the tremors make it appear that I am having a seizure all the time, I can't walk or stand for any long period of time and to top it all off, I lost my ability to think. I had a full cognitive evaluation done last July and found that I am smartest stupid person earth! ...... This may not seem like a big deal, but to lose that much of your IQ in a couple of years is awful, I feel stupid most of the time.....
This kinds of stuff is awful, no 2 ways about it. But, it might not be as bad as it seems once your anxiety eases. Lots of cognitive issues are effected by depression, anxiety, worry, fatigue and even the heat, for us with M.S. Plus when you get your 3 wheel therapy going, you might feel tons better. So, take it easy on yourself!!

I'm glad you are getting your meds straight. It seems to me that the opportunity to over medicate us is great. Too many doctors don't have the time or inclination to listen and talk, so they prescribe or ignore. I bothers me that I'm on 5 medications, but I know that I need each one and why. And, I get sick without them!

As for the heat, you might want to check out my friend Paul Pelland's Weblog. He's a long distance rider with M.S. and did some testing on cooling systems. I think he designed some kind of cooling system, also. He calls himself "Long Haul Paul". <http://www.longhaulpaul.com>

~Sandee~

[Bytemi]

Thanks for all the great information. I love the long haul Paul page. I think we have figured out the cooling part, well we know what we have to budget for. Now to find the right spyder. :)

[Netminder]

I to would like to welcome you back Bytemi! It was great to hear your update. I also have two friends that have MS and realize the struggle you go through and applaud you for your strength! It is so sad that our medical fields do not look more at the effects medications have on us and are so willing to prescribe meds without realizing they might do different thing to different people. One size does not fit all when it comes to meds. Anyway so glad you are feeling better since stopping them and happy that you will be starting wind therapy once again. Wishing you and family all the very best!

[Bytemi]

I to would like to welcome you back Bytemi! It was great to hear your update. I also have two friends that have MS and realize the struggle you go through and applaud you for your strength! It is so sad that our medical fields do not look more at the effects medications have on us and are so willing to prescribe meds without realizing they might do different thing to different people. One size does not fit all when it comes to meds. Anyway so glad you are feeling better since stopping them and happy that you will be starting wind therapy once again. Wishing you and family all the very best!

Agreed, a solution that works for me, may not work for another person a vice verse. I just hate that it took two years for me to realize what was happening. I guess I had a moment of lucid thinking. :banghead:

[Bob Denman]

Adele,
Have you contacted the "Gentleman from Galax", and asked him if he'd consider delivering the bike to you? :dontknow:

I'm not saying that he will, or that he should: I'm just sayin'...

http://www.spyderlovers.com/forums/attachment.php?attachmentid=131782&stc=1