Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Sunday, March 11, 2012

Driving Legs

Sorry that I haven’t written in a while. But this is my Place where I write my observations, troubles, triumphs and concerns related to me living with MS. There haven’t been a lot of those lately. That’s a good thing!

Still, I have a few followers and I want you all to feel free to comment and share your opinions and thoughts. I also invite anyone who is writing an MS related blog to send me a link at so I can add the link here. If you don’t have a blog to share but you do have a personal story or information you’d like to share as a guest logger, please email me your post copy and I’ll post it. The most important thing is we, or someone we love, share this disease for which there is no cure, yet. Scientists and doctors are working on new an even better ways of treating multiple sclerosis. Perhaps someday there will be a cure. In the mean time we all have to live with MS as best we can. For me, writing and sharing is one of the many ways I deal with it, one of the ways I keep the negativity away so I can continue to be happy and be the best me I can, even if that awesome me doesn’t really walk anymore!

My husband and I went on an all-day drive photographing trains and barns and enjoying the sunshine! Great source of vitamin D, you know, so keeping the sun roof open was a must! When we do day trips we bring the wheelchair.

There are a few reasons we bring the wheelchair instead of the walker. The first is speed. I am terribly slow with the walker. If we’re out in the country areas and I ask for a “pit stop” it may be a while before we get back into a town where we can find a rest room. Just imagine, ya gotta go and you stumble slowly with a walker. Hmm… The other choice is your Hubby brings around your chair and he pushes you right up to the ladies room door. See the advantage? I’ll wheel back into the store or restaurant we stopped at, but when seconds count… Okay, it's more like when avoiding sudden stumble when you’re concentrating on “other muscles.” But you see what I mean. I’m sure many of you deal with the shortened tolerance time between the urge and emergency.

Next is we usually eat at least one meal in a restaurant rather than carry-out. It really is my preference to use the wheelchair for restaurants. I don’t even want to imagine the horror of stumbling into someone’s table while they’re enjoying a meal, let alone that I can’t keep up with a host person showing us to our table.

But honestly, the most important reason the wheelchair is better for day trips is that after we’ve been in the car for a couple of hours, my legs become very cramped up and spastic. At home I stand and stretch my back and legs about every half hour. We wouldn’t get very far if we stopped every half hour when we travel. The wheelchair means I can pull myself up and stretch enough to relieve any spasticity before I get in the chair. Then the grab bars in the handicap restrooms are not only good for balance and transferring, but I’ll grab them to do a few serious stretches before I go back to the car.

The cramping and spasticity are my riding trouble. Driving is a rougher issue! I wouldn’t ever drive for two hours, I can’t. I discovered just how much work the hamstring muscles do pushing the pedals and moving between them. After about an hour, my right hamstring is very sore! Where the cramps and spasms as a passenger need a good stretch, my leg needs to just rest, be elevated and rest if I’ve driven more than an hour. My Physical Therapist has officially suggested hand controls for my car. If the passenger time is an indication, I’ll, be able to drive a couple hours and take a stretch stop. I know the hand control kit is free with a new car, but to add it to my existing car is a decent expense. I’m going to see if our insurance would cover part of it if I have a prescription.

So, anyone else have any driving/riding difficulties? Do you travel? What things do you do to make traveling more comfortable?

1 comment:

UnicycleRose said...

Thanks for sharing your struggles! My son lives with CHD. You are winners! Keep up the awfully hard fight, cramps and all ;0)