Each day walking is harder. I’m starting on a drug that might help (Cladribine) in four weeks and two days. I’m very frightened that I’m not even going to be able to walk by then.
Hello luv. Is there no way you could start this new drug sooner?
4 weeks and 2 days when you have daily difficulties, is a long time isn`t it?
How do you get about now? Are you doing what some call furniture/wall walking?
Do you use a walker? What about FES, have you tried that? There are many folk here who find FES so helpful. I never knew about it when my mobility failed me.
Please let me help you come to terms with not being able to walk, as I have been a ful time wheelchair user for several years.
Of course, no-one would choose to be immobile and rely on a wheelchair.
But if that happens, try not to think your world has come to a stop.
Infact, the opposite of that happened for me. I was struggling so much, having daily serious falls, trying desperately to drag myself around and feeling so utterly knackered all the time.
However, life can and does become easier once we become wheelie people!.
I no longer dread getting up in a morning, or dread going out. I can once again enjoy going places, knowing I wont be holding others up and getting on their nerves. Infact, I can keep going when others are just about done in on their pins.
If you want to talk more, please do so hun.
luv pollx
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Thank you Poll. I use two sticks or a walker to get around indoors - already using a wheelchair when out. Using two FESs as well.
I can’t have the Cladribine any earlier because I have to have four weeks washout off Gilenya.
I am scared of being in a wheelchair full time because of the other effects it can have on your health. Particularly what being “wheelchair-bound” means for your bowels and your lungs. Plus not being able to go in a normal car any more. I’m scared.
okay, here`s what being a full time wheelie means to me and how I cope with it.
Bowels…oho…a BIG …topic for discussion heareabouts!
Mine have always been troublesome, even before my hsp.
I take a movicol every night…if I dont go, I add stuff like figs, or prunes, or more water.
Lungs? had no problems with them…been a wheelie for around 13 years.
You can do upper body exercises. I also have feet and leg massages.
Transport? You may still be able to transfer with help of a person, a banana board or a turney seat.
If not, you`d want a WAV…a car where you get in via a ramp and are fastened down, either in the front, middle or back.
We have a 16 year old camper van with an electric tail lift. I sit at the back.
luv Pollx
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Hi Sewingchick
It’s a tough situation, but you are doing the right thing. Even if the amount you walk is reducing little by little, you’re still able to do some. And if you can still use crutches you’re probably not going to lose the ability completely in a few weeks.
I only do the titchiest bit of walking, using FES and a walker. And by titchy, I mean about 10 feet a few times a day. The rest of the time I’m using a wheelchair.
But, if you were to give your poor legs a day off, it probably wouldn’t mean that you couldn’t walk at all the next day. I often have to have a day when I don’t walk at all because my legs are just too knackered. The following day, I strap on the FES and start again.
Maybe you should use the walker a bit more rather than sticks. It’s not as good for core stability because you lean on it more, but it’s safer and might mean you keep what walking ability you have before starting the Cladribine.
And then just think, it might be a miracle drug that enables you to go back to your sticks and even increase the distance / time you walk
Sue
Sue`s advice is good. I hope the caldribine enables you to keep mobile hun.
pollx
Thank you. I’m meant to be standing in a corner each day holding the walker and having good posture, to get my thigh muscles working. Hard to motivate myself but I’m going to do it straight after this.
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