Knee,
I was diagnosed with MS 27years ago this April, at the time I was riding a 500 Suzuki. At that time my entire right sidewas paralyzed, I could'n walk, hold a foam cup withouth crushing it, and was unable to urinate.My neurologist told me to sell my bike and that I would be unable to ride again.I was getting married in afew months so I sold the 500 and continued my life as I had lived it before but not knowing what the future would bring, andmost of the symptoms went away in about six months. Over the next few years I hadafew exacerbations, losing the sight in one of my eyes, losing the ability to speak fluently besides still having the numbness in my leg and thumb. Two years after my onset I just said screw it I'm doing what I want to do, I built my first home with a friend and bought a HondaShadow and promised that I would have a Harley when I turned 50. I had a 2000 Road King, which I sold in 2003 and bought a Road Glide which I ride today. I've been a road captian for my local HOG chapter where I met a fellow road captianfriend who also had MS. We were both working on a ride toraise funds for MS when he died of complications from his MS. The ride is now named in memory of him and this year will be our third running. You never know what kind of curves life is going to throw you, but I've learned from my experiences you can't let it drag you down mentally and physically continue what you can. Laughing helps alot as well as riding.
Best of luck and live your life fully,
JSY
Jeff

 

Jeff,
If you want to , I would appreciate knowing the name of the ride. I probably won't ever get a chance to join you guys, but I dang sure can particiapte with the MS fund.If you feel it is awkward to post it on line, send me a pm.

 

My wife was diagnosed with MS 5 years ago at age 51, which is rather unusual. After the initial relapse she has not had another one that she would recognize. Others are not aware of her condition since there is no visible limitation yet. She has loss of strength and tingling in one hand, but that's it for now. The neurologist gave her some pretty strong daily doses of prednisone and the initial symptoms she had mostly went away. He started her on Avonex, which is a weekly injection that I have to administer. So far; so good! We retired that summer and started doing those things we wanted to do at retirement rather than wait another few years as was planned. She tries to stay well informed on all the news relative to the disease, but hasn't let it determine how she lives her life. While her symptoms are minimal right now, we both understand that may change over night. In the meantime, we count our blessings and try to do whatever seems right at the moment. We will not miss anything we want to do, but we do plan ahead with this under consideration. Best of luck to you!

 

FlGEEZ,
The ride is called the J.T.Pruticka MS Charity Ride out of Harley Davidson of Ocean County NJ, 300 Rt. 70 Lakewood, NJ 08701. The ride will take place in April 07, we've just begun to start working on the logistics. I'll will keep you informed as to the date so you may contribute. If you would like I'll also send you pictures.
Thanks so much,
JSY
Jeff

 

Knee,,,,,,,,,,,,,,,,,,I wish you many, many more years of safe riding. Your attitude is fantasic. You have the support of every HD member. God Bless.

 

Thanks. We aren't all that far away. Send the date and details. If we can't make the ride, I'll ask you toforward the contribution details.

Price

 

I have four very dear friends with MS, as you know it affects all of you differently.

This we do know; if you pay attention to your body, get plenty of rest (even if you can't sleep) and stay out of the heat and keep your body cool you should have for the most part a very productive life. Rest and staying cool is the key, "do not"overwhelm your body for any reason. Iknow of one individual thatjust about gave up on lifeall together because he had got to thepointof not being able to ridedue to heat exhaustion (here in AZ that's a given), then someone gave him theanswer while just talking in general...buy a Goldwing (his only fault) because they are water cooled and have fans in the lower vents the pull airaway from you, "AND" he bought a body suit similar to heated gear thatcools (we've all seen the advertisements on thevest).Dude it can get to114 deg's here and often is, and he's doggone near freezing in the dead ofsummer...he says...life is good .

We lost our Mom to diabetes, mostly because sherefused to change lifestyles and would not give up her favorite passions like: smoking, soda popwith sugar, sweet cakes, etc. It was her life and her choice but her disease progressed way to fast, due to her refusal to adapt.

Think about water-cooled vehicles (VROD, hondaor whatever) get a trike kit when and if it becomes necessary. Cooling suits/clothes etc. (just food for thought or an idea that worked for someone else)

Anyway you folks have identified how to changeand adapt in order to continue to live for your passions and your family...good for you and God Bless.

 

Hey Knee,
Thanks for sharing.My next door neighbor has it,& it's starting to show.She has it rough without MS(husband left & a 12yr old to tend with).She just had to stop working & is trying to get SSD(Good luck if your American[:@]).She talks to my wife alot about it,& my wife is her friend so it's kept betwen them so I don't ask.But made it known I'm there if needed,no questions asked.
So from what Ican see,,,,,,,,,,ride my brother,,,,,,,,,,ride til it hurts

 

Sorry, this will be long...
My dad was diagnosed with MS back in the late 60's - he was about 30 years old with 4 young kids and a wife. Within 2 years he was in a wheelchair full time. He was completely paralyzed from the waist down. He worked as a salesman and most of his clients were in downtown Chicago, and back then streets didn't have curb cutouts and there was no handicapped parking. He had hand controls installed in the car and would put his wheelchair in the back seat. He would have to swing himself around in the driver seat, reach back through the open back door and get the chair, then transfer himself into it, get himself up over the curb and into the building, then make the sales call. But, he was an extremely strong willed man and was not going to let something like this stop him. In fact, it motivated him to the point where he became an activist for the disabled. With soldiers coming home from Viet Nam in wheelchairs, accessability was something that needed to be adressed. My father started locally, raising money at our church so they could build a ramp. Then, he moved on to local public buildings. Our town was the first in the state of Illinois to mandate that all new construction had to include curb cutouts, ramps and handicapped parking. The rest of the state followed suit. Eventually, he was asked to join the President's Committee for the Handicapped and was invited to Washington DC to meet President Ford.

He continued working full time for nearly 30 years and even ventured into politics. He had too many accomplishments in his life to even try to list them here (I even remember watching him on the Phil Donahue Show). He died 11 years ago, but his legacy and memory lives on in the plaques and signs around town that bear his name.

Don't let anything stop you from living your life to the fullest.

 

Knee… I was diagnosed with MS 3 years ago but many symptoms go back 15 years that I can attribute to MS, or maybe not… who really knows. Anyway being open about it and even joking makes it much easier for me. I’ve considered support groups but have not pursued it since I feel comfortable discussing with friends and family. I also take Copaxone and after my first year using it my MRI showed reduced lesions and each year afterwards no progression. I do every thing I can to keep my body and mind healthy, from exercise, reading and eating right; well most of the time anyway.

I recently stopped riding my bike; 98’ Valkyrie, which I sold after months of thought. I was getting dizzy at times and my reaction time was getting questionable in my mind. I found myself kind of freaking out in twisties – like I was unable to mentally process what to do, in other words it was not natural anymore. It just was not right; and I was afraid to ride with anyone near me because I needed the entire lane. Oh… this was a bad thing and I could see road rash in my near future. I have rode bikes since the age of 12 and I’m 44 now; MX, Street and Cruisers. So I guess my body was telling my mind it was time to stop, !$#@. All is not lost though I still get the wind in my face; I moved to four wheels and bought a Corvette Convertible. It’s not the same – but the free open feeling is there.

Never give up… just adjust! I look at the disease as an opportunity to experience and learn new things and share my experiences with others. It’s all in the attitude so keep it up and ride until you’re body says otherwise… you’ll know.

F6rider (well I used to be anyway[8D])