A Few Questions - Muscular Dystrophy Message Board

Madalot · 11-13-2008, 04:58 PM

Hi everyone --

I was just curious about a couple of things, see if people have the same issue on one thing and if they know on the other!!

1) Do any of you find that once in a while, you just can't do something one day that you've always done and not had problems? Then the next day, you can do it again? Example -- I shampoo and condition my hair in the shower every day. I have to be careful about buying products that I am capable of using. For example, the bottles can't be to large (too heavy for me) or made of a stiff plastic that is difficult to squeeze. I like pump bottles, but they tend to clog up sometimes. Anyway, I had a new shampoo/conditioning product and was using it just fine. On Monday, I could NOT squeeze the conditioner bottle and get any out (it was full so that wasn't the problem). I tried and tried and finally gave up (it doesn't have a top that you can unscrew or I would have tried that). On Tuesday (and the rest of the week for that matter), I had no problem at all. Does this kind of thing ever happen to any of you?

2) I was reading some of my records from my old neurologist (I changed when we moved in 2004 and now see a top-notch MD neurologist at a major university hospital). My old doctor was rating my weakness at 4+. I looked on the internet and saw a couple of different scales. One was based on a 5-point system, so a 4+ seems almost normal and that didn't make sense to me considering even back then (2000-2003) I couldn't get up from a chair without using my arms, had major problems with steps and getting up from a fall. I saw other scales that were based on 7, 10 and 12 points. Does anyone know what type of scale they typically use in a situation like this? I don't want to call my old neurologist because he sometimes said things, then denied saying them later.

Just curious what experiences others have had.

NP74 · 11-14-2008, 09:13 AM

Hola,

Funny you should mention that. I have experienced the same things, the other day I did the dishes, and when I had to put the glasses onto the top shelf in our cabinet I could hardly do it I had to kind of let my arm "crawl" up the shelves, but when I did it the next day (I was nervous about it), it was effortless! I am sure it has something to do with how much I have used my arms/shoulders prior to doing the dishes. The same is the case with getting in and out of my car. Some days I nearly jump out, and others I have to pull myself up.

Every time things like that happen I get scared and nervous, which makes it harder the next time just because I am thinking about it.

This leads me to a question. How do you guys deal with fear and anxiety issues? I had an unpleasant experience at work a while ago. I have always been careful to make sure I get up and down and walk and stand as much as possible when I am at work. One day the owner of the business I work at told me that he does not want me out of my chair unless I am coming, going, or using the restroom, he told me that he will be found negligent if I fall while working. This has caused me to become even more selfconscious and nervous than I ever was before. I now have my husband come and help me get out of my chair and walk to my car every night when I am off, and most days I will be sitting down for up to six hours straight, which is not only uncomfortable, but also not healthy.

michigani · 11-14-2008, 10:29 AM

Hi girls!

I also experience the on again / off again thing. I am BARELY still climbing the stairs at night. It's not Impossible yet but takes a lot of effort. The first step up is the hardest because of the railing layout. Some nights it takes 2-3 attempts to get up onto that first step. Other nights I get right onto it like it's no problem. The next 12 stairs are not too bad because of the technique that I've developed. But I understand completely.

Madalot,

I've always seen the 5/5 system. I asked my doctor about it. I ALWAYS ask stuff! If I remember correctly, the numbers are Left/Right and a "5" is normal. A "2" means you can hold the limb up against gravity. "1" means you cannot raise the limb against gravity with 3 and 4 of course falling somewhere in between.

NP74,

I feel your boss was a little unreasonable. He should let you do what you feel your limits allow. Plus, I personally always worry about embolisms from hours of sitting. I admire you for working. I won't go into my 5,000 word story but I left my job in 2005 because my building was not accessible nor was it possible to walk construction sites anymore, which was required of my engineering position. (My company designed and built factories and hospitals). Plus I had a great, and unusual, disability insurance which thankfully pays my salary until I'm 65.

I've been having panic issues walking outdoors, like in my driveway or at a store. I'm confident in my house but I'll take 5 steps out in the open (with my cane) and freeze, terrified I'm going to fall. I'm using the walker and scooter much more often!

Take care and try to keep optimistic. I always tell myself there are others out there who have it infinitely worse!

SHANTACLARE61 · 11-17-2008, 09:25 AM

Hi everyone,

I can't tell you how often I thought of posting about this very thing! But wasn't sure how it would be received, because I wondered some days if it was all in my head.

Some days I can bearly walk up my driveway from from the car and other days I can go to the grocery store AND the discount store another thing is somedays I can wash, blowdry, AND curl my hair and other days my arms are to tired just from shampooing that I can hardly towel dry it.

I also have one night out a month with my friends to play bunco. I have able to play the game because they all allow me to not have to move from table to table as the game requires, but the last time we played I was able to get up and move quite easily.
Now I have to wonder what my friends are thinking ( I thought you needed to sit?).
Well I thought so to!
My theory is that I have learned how to pace myself most of the time and due to that, I have more strength at certain times. But then again their are days when this theory gets blown right out of the water.

Thanks for being here and letting me get this off of my chest

.
Mary

casinogal · 11-17-2008, 12:27 PM

Hi, I notice the same thing. Sometimes, I can do things quite well, like going up steps. Other times, I have to pull myself up using the hand railings. I do find if I use support on my weakest leg (elastized knee support) I can manage walking much better. Without it, I am limping in short order and my leg feels weak and heavy. I also notice that my legs will hurt in different areas at different times. Sometimes, I can press on a spot of my leg that feels very tender and like there are knots in it. Other times, that same spot has no soreness and the soreness will be somewhere else. It's almost like it moves.