Riding with MS

Closed Thread Subscribe

Thread Tools

Search this Thread

May 1, 2011 | 11:17 AM

Puggy

Thread Starter

Tourer

Joined: Jan 2008

Posts: 359

Likes: 1

From: Rockwall, TX

Riding with MS

My wife was diagnosed with MS over the winter. We live in the DFW area and it can get pretty hot (brutal at times). I know that heat can cause some problems with her MS, but I'm mainly wondering how other's are dealing with it. Are there any signs, symptoms or anything to look out for? Are there any tips/tricks that might help alleviate the onset of an MS flairup? Are there any "support groups" for rider's that we might be able to learn from? Any/all help or suggestions would be appreciated. We both love to ride and she (and I) are very afraid of her having problems on a long ride.

May 1, 2011 | 03:52 PM

cdestuck

Supporter

Joined: Dec 2006

Posts: 6,724

Likes: 234

From: Altoona, Pa.

Quote:

Originally Posted by Puggy

Sorry to hear of the diagnose for your wife. Now trust me Im by no means no expert in this field but do know there are so many variables to MS as there are with mony illnesses. I have a friend with MS who has no symptoms but she does have it. Some people have more, some less. Some people progress faster than other s and so forth. Postive attidute can help. Just going to try to see what she can handle. Even a general support group certainly would be helpful. Good luck and hope hers is very slow in progressing.

May 1, 2011 | 04:12 PM

1931jamesw

Ultimate HDF Member

Joined: Nov 2008

Posts: 6,682

Likes: 12

My mother has been diagnosed with it, then told she didn't have it, then told she does have it. The first diagnosis was made around 1995 and she still lives at home by herself but her quality of life the last 4 years or so hasn't been too good but does seem to have improved lately. There are 3 or 4 different types of MS. Some people get pretty bad pretty quick and others aren't affected by it much. One of the things that may help your wife are massages if she suffers from spasms or burning sensations in her extremities. Another thing to watch is diet. This may come into play largely if the disease progresses to the point that it effects her mobility. Carrying extra weight just makes it that much harder for her to move and can lead to having diabetic problems later on too. I think those are the main things other than getting a doctor that you trust and are comfortable with. You might look into buying your wife a good foot massager for home and maybe the occasional spa massage is nice too but can become expensive. One other thing she needs to do is avoid stress. From what I understand it's an auto immune disease where the immune system fights itself. Stress will only cause her to be more fatigued. As stated before, her will to not let it effect her will come into play too. I hope she gets wel soon. With all the controversial stem cell research that has gone on, they say it may be the cure for MS. This (MS) may be something that will test you on where you stand on stem cells being used.

May 1, 2011 | 05:19 PM

ttboy

Advanced

Joined: Jul 2007

Posts: 91

Likes: 1

From: Michigan

My wife found out in 1993 that she had MS. Been riding with me still every since. Granted we don't have the heat you do but she has been able to ride no problem. It affects everyone differently. She had some episodes early on but started giviing herself a shot once a week of Avonex in 1998. Been symptom free since. Its a blessing. She runs everyday and works out, trying to be in best shape to fight it. Your not alone. Any question, you or the wife, ask and i'll get her to help with answers. Good luck and God Bless.

May 1, 2011 | 05:46 PM

Led Sled

Advanced

Joined: Nov 2007

Posts: 81

Likes: 1

From: Ohio

I was diagnosed with MS back in 2006. Luckily for me, I haven't had too many issues. I ride 8,000 to 10,000 miles a year. I make sure I listen to my body and don't push it too much. Keep hydrated and keep my body (physically) in shape. I had issues with my vision so I make sure I wear good sunglasses. The main thing I learned is that you can't live tomorrow today. So do what you can today and take each day one day at a time. I get MRIs every 12 months too to make sure everything is monitored with my MS activity.

May 1, 2011 | 05:52 PM

ptl203

Road Warrior

Joined: Aug 2008

Posts: 1,595

Likes: 7

From: Wall,NJ

James posted some great info for you. My wife was disgnosed with MS approximately 11 years ago. She was on the weekly injection of Avonex since she was diagnosed but they recently changed her medication to a 3x's a week shot. Her MS is progressing, mostly due to her being struck by a car while walking through a parking lot and striking her head. Trauma and stress can certainly exasperate the progression. With the weather, my wife seems to do slightly better in the summer where the temperatures here are around 85-95 in NJ. The cold winters kick her ***. I am adding a tour pak for her next month and adding floorboards to try to make her ride more comfortable. As offered by previous posters, if you need anything PM me and I would be more than happy to give advice for what has worked for us. Most importantly, find a excellent MS specialist who your wife is comfortable with...it makes all the difference. Also, a therapist for her to speak with may help as well. Its a long road and I know my wifes therapist helps her though a lot of stuff that I cant. Good luck

May 1, 2011 | 07:27 PM

hoofnhog

Road Captain

Joined: Oct 2006

Posts: 559

Likes: 51

From: maine

MS sucks............

Trending Topics

1979 XLH 1000 - a good year?

104

2.3k
Stage 1 - What tuner are you using?

28

1.1k
Oil temp monitoring on a 23 Ultra Limited

27

703
Interview - A Straight-Talking Harley-Davidson Dealer

43

2.3k
FLT to FLHS

21

293

May 2, 2011 | 10:09 AM

oct1949

Club Member

Joined: May 2007

Posts: 145,895

Likes: 821

From: 40 miles Northeast of Indy..

Wife found out she has MS back in 2003 for sure, had test ran on her for 3yrs to finally make sure thats what it was..
First thing is to get a good Dr. then on some kind of treatment..
She's on Capoxone.. Its a shot everyday. Hope U have good Insurance, its right at $24k a yr. just for that.

She still has flair ups, couple times a yr, mostly legs. As U know heat and Stress is usually what causes them. (Stress,, OOOps Now its my fault.

.

She seems to be perfectly normal but can go from happy to pi$$ed in a sec, Oh wait thats the way some people are anyway... Bahawawaaaaaaaaaaaa...

As far as riding, I have stated in here many times we do our riding in the later hrs when the suns on the downside. We'll leave around 4-5 PM and ride till she gets tired, usually 2-4 hrs almost daily.

We don't do long trips/vacations cause the high noon sun could bring on an ON-SET, and it wouldn't be good to be a long way from home if that happened.

Even here in Ind with our short riding season we still put on 10k a yr and she's on the rear 95% of those miles. So U just change Ur time, not the amount of miles U ride.

MS is totally different for everyone. No two are alike and thats what so bad about it.

Getting on some kind of Med is the key and the sooner the better.

There are all kinds of support groups and a lot U can find a lot of info on the net. just do some searches and reading.

U can still have a good life once she's on the right meds.

Wish U both the best. and ride safe.