Well I’ve done it. Pressed my luck. - My MSAA Community

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Well I’ve done it. Pressed my luck.

Kompany profile image
14 Replies

I waited until DH was in the shower so I could make it outside on my own down the concrete steps to get to the car. Again with a lot of forethought (although w/ afterthought I should have left my backpack at the top of the steps and reached back for it) I made my way down. I got down one step but my dead leg wouldn’t let me go further or back, so I was stuck. I ended up with a scraped knee & my only white pair of tights snagged up 😡

Now my knee burns like crazy, but no broken bones, but trying to figure stairs out has been the bane of my existence & I just realized that our bed isn’t on risers so I have to figure that out 😡

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Kompany profile image
Kompany
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14 Replies
greaterexp profile image
greaterexp

I’m sorry. We were so fortunate to move to a 1-story house about a year after I was diagnosed. My sewing room was on the third floor, so I probably would have had to stop. We still looked at houses with 2 levels. My husband thought we could install a stair lift, but since we were starting from scratch, it seemed easier to just get one level.

Is a stair lift a possibility for you?

Kompany profile image
Kompany in reply togreaterexp

Well, we rent, and try not to ask too much from them since they are getting up in years themselves. Since I’m getting a wheelchair I think I’m going to wait until we see how that goes. I want to talk to my PT about her suggestions. And then go from there . We like our set up where we live & I don’t mind the bumps and bruises (I don’t feel them 😊) but I’m getting frustrated with my body not listening to what I’m telling it to do 😖 That has nothing to do with the house.

mrsmike9 profile image
mrsmike9 in reply toKompany

Oh yes. I hate my stupid body that doesn't listen to my brain, too. Even worse is when my brain stops working and I can't remember things, words, etc.

Kompany profile image
Kompany in reply tomrsmike9

I hold my body severely responsible for those brain farts & when my body refuses to listen.

I’ve done so many brain exercises to train my brain, to no avail.

In the end all I can do is wipe the tears off my face, fix whatever makeup I have on, say a silent prayer, take a deep breath though my nose & exhale through my mouth & put a big smile on my face 😁(& you’d be surprised at the compliments I get from my smiles!). Maybe they just feel bad thinking that I’m being beaten with all my bruises, even though I talk up my hubby, cuz he is SOOooo much better than my first husband, in fact he spoils me & married me knowing I had MS.❤️🥰

mrsmike9 profile image
mrsmike9 in reply toKompany

I had neuropsychologist testing a couple years ago. I thought I was getting stupider. He told me I wasn't. My brain was like a computer buffering. That little circling thing that drives us crazy? Well, my buffering brain drives me crazy.

Juleigh21 profile image
Juleigh21

We moved 2 years ago into our current home. It’s a one and a half story. I rarely do stairs any more. Can’t trust my right side.

Would it be possible to have an occupational therapist come out to your home to give you suggestions on bathing, getting in and out of bed more easily, stairs, etc.? They have been life savers for me.

rjoneslaw profile image
rjoneslaw

sorry to hear that

Kj9681 profile image
Kj9681

You can do it! 💪🏾👊🏾 #fight! You’ve got this!

Kompany profile image
Kompany in reply toKj9681

Thx🤗 I’ve got a fantastic support group in house (you all) and a network of friends & family who are helpful. (1 young man saw me struggling walking & asked if I wanted any help. I’ve been paying attention to the warnings on my Rollator since I got it but I’m too tired now and my dead leg doesn’t help, so I said “Yes! Thank-you!!!” And holding my leg so it wasn’t dragging & pulling the Rollator I was at my seat and in a few steps I was in a real seat. I’ve known that young man since before he was into video games. He’s become a caring gentleman. His friend took me to my car where my DH had a reprieve from assisting until we got home. 😁

In the meantime I welcomed home my brother, sister-in-law, & niece who had gone to Ireland to visit friends and family. I was able to follow their journey via Instagram. My nephew is predictable. Not yet 20 he is caught sleeping the same way in different beds multiple times. Decades ago I snapped a pic at my Dad’s & last week my niece got another (plus I’ve taken several at our house over the years)

The support system makes all the difference. On my own when I’m healthy I’m a loner & happy but now that I’m getting angry with my body, the support system is very much needed. In fact, the 1st Tuesday of September will be the first Support group I go at my PT office. I thought talking to people in person would help the most especially since giving up driving.

So fight it is, although I’m not one by nature I’ll do what I can to survive 😁

pamgarner profile image
pamgarner

ok,we probably should not try steps.I don't go down them anymore but when I had a broken leg I was determined to get down the steps,my car was down steps and since it was not my driving leg i was determined to get to my car(where I thought I was going I don't know) but I found the best way was on my backside.so my husband decided to get my car painted so I wouldn't have a car to attempt this trick.He brought it back when my leg was healed...smartiepants!!

falalalala profile image
falalalala in reply topamgarner

🤣

IFwczs profile image
IFwczs

It's a good thing you don't turn down offers for help when you need it. What do you mean by "dead leg"? Is it spasticity you are referring to? Have you tried Ampyra? My right leg doesn't move much without Ampyra.

Kompany profile image
Kompany in reply toIFwczs

I have a hyper-extended knee so I have to physically lift it to make it move. It drags when I don’t ergo, dead. I see my neurologist next month to figure things out.

DIsneyQueen profile image
DIsneyQueen

My left leg is my weak one. I can walk but often have to lift it. I also have terrible foot drop in that foot which caused me to trip a lot. My neurologist and PT got me a new leg brace that attaches to my shoe and goes up to below my knee. It is adjusted to prevent hyper-extention of my knee, which made walking hard. It has helped tremendously

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