It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Muscular Dystrophy Message Board

A Few Questions

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 11-13-2008, 03:58 PM   #1
Senior Member
Madalot's Avatar
Join Date: Mar 2003
Location: Virginia
Posts: 264
Madalot HB User
A Few Questions

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.

Sponsors Lightbulb
Old 11-14-2008, 08:13 AM   #2
Senior Member
Join Date: May 2007
Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: A Few Questions


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.

Old 11-14-2008, 09:29 AM   #3
Senior Veteran
michigani's Avatar
Join Date: Dec 2004
Location: Michigan
Posts: 538
michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
Re: A Few Questions

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.


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.


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!

Last edited by michigani; 11-14-2008 at 09:31 AM.

Old 11-17-2008, 08:25 AM   #4
Join Date: Oct 2007
Location: USA
Posts: 63
Re: A Few Questions

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.

Old 11-17-2008, 11:27 AM   #5
Senior Member
Join Date: Jan 2005
Location: Canada
Posts: 116
casinogal HB User
Re: A Few Questions

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.

Old 11-17-2008, 12:25 PM   #6
Senior Member
Madalot's Avatar
Join Date: Mar 2003
Location: Virginia
Posts: 264
Madalot HB User
Re: A Few Questions

Thank you to everyone for sharing your experiences on this subject. At least I know it's not just me that has this problem!!

There are times that I can attribute the increased weakness to something I did, like overexerting myself. But that darned conditioner bottle had me perplexed!! LOL

Old 11-19-2008, 06:58 AM   #7
Senior Member
Join Date: Oct 2008
Location: South
Posts: 127
Snickers60 HB User
Re: A Few Questions

This very thing has made me doubt my diagnosis sometimes. Being totally able to do something one day and NOT at all the next.

Like typing.....sometimes I can type and type on the net...and the next day, I can barely hang to answer one e-mail.

Walking is always hard, though easier some days than others....I have a scooter now for the OTHER days.

Sometimes, I too shower, do hair etc. without toooooo much effort, and some days I'd rather get a beating than have to THINK about dealing with it. I have a few hair pieces that help me manage days I can't. Saves that energy for something more important that day.

Like today....I knew I had a Doc appt, so I did my hair yesterday. Because I'm a BLEACH BLONDE , I can usually get away with 2 days, then getting to the Doc alone is easier when I haven't worn myself out with my hair.

I am having really bad days on my legs lately. The cramping is so bad, I can hardly put my feet flat on the floor. I hate it.........and they are soooooo heavy.

I don't do stairs anymore after a TERRIBLE TERRIBLE FALL and injury.

I actually made dinner last night..........haven't been able to do that in eons, and I went out yesterday to run a few errands, but I am shut in usually 5-6 days a week. A LOT depends on the weather, barometer, and humidity for me. I function much better with WARM, NOT HOT weather. This cold just FREEZES me up and I do not want to move I have soooo much stiffness.

I really appreciate this has been a blessing to me.

Blessings to all, Snickers60

Old 11-19-2008, 12:30 PM   #8
Senior Veteran
michigani's Avatar
Join Date: Dec 2004
Location: Michigan
Posts: 538
michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
Re: A Few Questions

Oh yeah....! It's COLD here in Michigan this week. 20-some degrees. It makes everything twice as hard.......literally. I step outside, take a few steps, and feel like I'm freezing solid into a statue. Come on Spring!!!!!!!!

Old 11-21-2008, 05:26 AM   #9
Senior Member
Madalot's Avatar
Join Date: Mar 2003
Location: Virginia
Posts: 264
Madalot HB User
Re: A Few Questions

I too am finding the cold more problematic these days. I HATE hot weather and actually prefer cold, but in the last few years I noticed how much more difficult it is to move and the aches are so much worse in cold weather.

We live in Virginia and our house has heat pumps (people from the north may not even realize what that is). Heat pumps are fabulous in the summer and do okay until the temperature gets in the 20's, then they're not very good. Even though the house is 69 or 70 degrees, it still *feels* cold. Like Snickers, I don't go out many days and am a basic shut in and I commented to my husband that especially on cloudy days, I was freezing in the house. I had purchased a set of women's long underwear last year, but never remembered/got around to trying them out. Since today isn't getting out of the 30's (that's pretty cold for Virginia in the daytime), I decided to give them a shot.

I think I'll put another pair on my Christmas list because they are cozy!! I'm hoping that by trying to stay warmer and keeping my legs warmer, some of the aching will be minimized!!

Thanks again, everyone, for sharing your experiences. Sometimes I question myself too and it's good to know that what I'm experiencing is normal and others run into it too!

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Ask questions !!!!!! !!!!!! !!!!!! adjusterrka Cancer: Lung 2 09-14-2010 06:33 PM
Questions to ask the dr. list PNo Spinal Cord Disorders 6 12-06-2007 09:37 AM
Help with questions for Cleveland Clinic doctor thyme2b Osteoporosis 19 04-06-2007 06:24 PM
autistic son can't answer questions Dolceaura Autism Spectrum 14 02-01-2007 05:09 PM
Questions.. Beekermlady Foot & Ankle Problems 9 08-19-2006 06:36 PM
Questions to ask the surgeon before surgery! girl12345 Back Problems 1 09-03-2005 05:05 AM
Not For The Faint Of Heart - Questions Sickman Panic Disorders 27 08-09-2004 05:09 PM
Some RSD questions... sealover Reflex Sympathetic Dystrophy (RSD) (CRPS) 1 04-13-2004 12:57 AM
Marlene .. A few Questions?? Bren30 TMJ Disorder -TemporoMandibular Joint 7 12-11-2003 12:36 AM
Hi, I'm new and have many questions,Please help RachelH TMJ Disorder -TemporoMandibular Joint 6 11-09-2002 09:46 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:56 PM.

Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2016 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!