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



Muscular Dystrophy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-31-2010, 12:53 PM   #1
Senior Veteran
(male)
 
michigani's Avatar
 
Join Date: Dec 2004
Location: Michigan
Posts: 538
michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
Stairs... I hate 'em!

I'm usually upbeat and optimistic. Hopefully I'll stay that way. But last night I DID have a rotten experience. It finally happened. I could not get started up my stairs. (I climb 13 stairs every night to get to my bedroom). The first and 13th step are the hardest because of the railing and wall setup. There's nothing to grab. I was tired more than usual and I couldn't begin to get up the first step. Next, the comments from my wife and daughter started that I had "better figure something out". Then a bunch of yelling and screaming. Finally I went and sat in my lift recliner saying I would sleep in that for the rest of my life. Goodbye bed, goodbye showers!

After about 15 minutes my wife said lets give it another try. We discovered that with a little upward yank on the waist of my pants I could get up. This was almost no effort on her part...maybe 10 pounds of lift but enough to do the job. The next 11 steps I can handle, then I usually need an arm to grab once at the top.

Moving seems to be out of the question. My wife and daughters love our home. yet they want ME to come up with a solution that doesn't cost thousands and doesn't require moving.

OK, that's my vent for the month......back to happy Mark now.

 
Sponsors Lightbulb
   
Old 05-31-2010, 06:42 PM   #2
Senior Member
(female)
 
Join Date: May 2007
Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: Stairs....I hate 'em!

Hey Mark,

Sorry about the bad experience with the stairs. It is funny how I can walk on forever and ever, but I cannot do a flight of stairs without my husband pulling me up. Our house is thankfully a ranch style with no stairs of any kind.

We just went on a week's vacation to see my in laws in the Midwest, and all the houses there have stairs to get in and out etc, and by the end of the week I was drained physically and emotionally. I simply got tired of pretending that having my husband basically carry me up the stairs is no big deal. It is ok now and then, but to repeatedly ask me to go outside then back inside then back outside etc, just takes i toll. Oh well, I am back in Florida now!

I hope you will keep on doing well on the stairs, finding a solution should be a shared decision, and I hope you and your family can work something out.

P

 
Sponsors Lightbulb
   
Old 06-02-2010, 05:26 AM   #3
Senior Member
(female)
 
Madalot's Avatar
 
Join Date: Mar 2003
Location: Virginia
Posts: 263
Madalot HB User
Re: Stairs....I hate 'em!

Mark --

You have my sympathies on having to deal with steps on a daily basis. I am so glad that we made sure the house we bought didn't require me to go up and down stairs like that. The last time I used the stairs was when we blew a fuse and my entire family room and computer down. I had to go into the basement twice to try to fix it and I messed up my ankle to the point I couldn't walk at all! I ended up having x-rays and doing physical therapy to fix that stupid ankle so I could keep walking on the main level of my house! I'm guessing that my weakness causes me to compensate and in doing so, puts tremendous strain on that ankle.

Now, the only time I'll go in the basement is during tornado warnings! I avoid those stairs whenever I can!

 
Old 06-27-2010, 12:03 PM   #4
Member
(female)
 
Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 70
Monnie45 HB User
Re: Stairs....I hate 'em!

I am able to get up and down stairs but slowly and with difficulty. I am also able to get up one curb but noticed today that it is very difficulty with my right foot, with my left it is much easier. When I see stairs without railings, however, I freak. I seem to need the rail to balance myself. I am working with a physical therepist but am not optimistic about it getting better. I am very anxious when I go places I haven't been before especially when I am with people that don't understand. What can I say to them?

Marlene

 
Old 06-27-2010, 03:41 PM   #5
Member
(female)
 
Join Date: Jan 2005
Posts: 94
dkbladez HB User
Re: Stairs....I hate 'em!

Hello again Monnie,
If you feel comfortable talk to those individuals and explain to them that you may need help getting up stairs or the curb. You may want to pick one or two who can be your designated buddies. It doesn't take much to help and it can be done without drawing attention to yourself or others with practice. Many of us here have been at this point in life, unfortunately I am way pass that point now but it wasn't that long ago that I was feeling the exact same things you are speaking of.

 
Old 06-27-2010, 08:02 PM   #6
Junior Member
(female)
 
Join Date: Dec 2005
Posts: 38
1stxmom HB User
Re: Stairs....I hate 'em!

I know how you feel Mark. I am 29 yrs old and have been dealing with this all my life. I have a really hard time climbing stairs. When I see stairs without a rail I start to panic. Anything that reguires a step up is difficult for me. If you don't mind me asking what kind of muscle disease do you have? I am in the process of trying to get a diagnosis. I have been misdiagnosed twice now.

 
Old 06-28-2010, 12:45 PM   #7
Senior Veteran
(male)
 
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: Stairs....I hate 'em!

Quote:
Originally Posted by 1stxmom View Post
I know how you feel Mark. I am 29 yrs old and have been dealing with this all my life. I have a really hard time climbing stairs. When I see stairs without a rail I start to panic. Anything that reguires a step up is difficult for me. If you don't mind me asking what kind of muscle disease do you have? I am in the process of trying to get a diagnosis. I have been misdiagnosed twice now.
Hi "mom"

I have LGMD and I'm 49 years old. There's been a small development. Read my "guinea pig" post from a few weeks ago. My doctor started me on Albuterol (usually used for asthma) 6 weeks ago. This has helped increase my energy and stamina. My stair climb has gone better since starting the treatment. I'm not stronger, just not nearly as fatigued at the end of the day.

 
Old 11-20-2010, 08:57 AM   #8
Member
(female)
 
Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 70
Monnie45 HB User
Re: Stairs....I hate 'em!

Mark, I have myotonic dystrophy 2. I was diagnosed several years ago by a blood test.

Marlene

 
Old 11-20-2010, 03:15 PM   #9
Senior Veteran
(male)
 
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: Stairs....I hate 'em!

Quote:
Originally Posted by Monnie45 View Post
Mark, I have myotonic dystrophy 2. I was diagnosed several years ago by a blood test.

Marlene
Hey Marlene,

I looked at my data, and I have a lot. For all the information I've collected, I have almost nothing on Myotonic type 2. I should ask my clinic doctor if testing is an option. But he would certainly want to consider it a suspect before proceeding.

My symptoms are, by far, weakness in the hips and legs, then my arms. My grip is starting to go in the last few months. other symptoms of much less concern are occasional heart palpitations, blurred vision, hard-to-hold-bladder, aspirating liquids. All of these happen only once in a while. Do you experience any of this? I might talk with my Dr. if Myotonic is a possibility. I'd LOVE to get diagnosed.

Mark

 
Old 11-20-2010, 04:38 PM   #10
Member
(female)
 
Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 70
Monnie45 HB User
Re: Stairs....I hate 'em!

Hi, Mark, I have seen your name a lot, Michigani. Are you on other boards as well? You always seem to know so much. I have a hard to hold bladder but I have had three children and that is not uncommon. Unfortunately, I also have problems with the other end, if you know what I mean. I have not had blurred vision normally. I have other symptoms, though, a tightness in my lower forehead and upper cheeks and sometimes straining of my eyes. I have also been diagnosed with Meniere's Disease and according to an MRI that I had, have chronic maxillary sinusitis. I have been told by my ENT that the tightness could be caused from the Meniere's and from the rhumatologist, that it could also be frrom the MD2 and my thought it is also possibly from the sinusitis. By the way, my father had muscle weakness but it was never actually diagnosed, not even NIH could diagnose him, now it has a name.

Marlene

 
Old 03-10-2011, 12:28 PM   #11
Junior Member
(female)
 
Join Date: Nov 2007
Location: CA
Posts: 17
sarahJ74 HB User
Re: Stairs... I hate 'em!

Mark, have you thought about this for stairs:
Get a brick or something just a bit bigger than your foot, that is about half the height of the first stair. It is much easier to step up onto something shorter, then you're half way to the bottom stair. Then put one up at that top stair too.
We considered moving into a home with stairs and because of the curve we could not put a chair lift there. I was going to have my husband build permanent wooden blocks onto each stair making the height of each stair half as tall. It does make more stairs to climb, but makes it so much more manageable!!!!
Luckily we did not move into the two story home, but this current home has 2 tall steps on the front porch and I had him place square cement bricks that are about 3" tall and about 7 inches square. That helps me get up onto the tall step much easier!

I hate stairs too!!!!! If there is a rail or wall for me to just gently put my fingers on to help balance me I'm fine. (Usually I need more than a slight balance, I use the wall to push against to help me get up) But if there is not a rail I PANIC!!!

 
The Following User Says Thank You to sarahJ74 For This Useful Post:
michigani (03-10-2011)
Old 03-10-2011, 12:55 PM   #12
Senior Veteran
(male)
 
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: Stairs... I hate 'em!

Quote:
Originally Posted by sarahJ74 View Post
Mark, have you thought about this for stairs:
Get a brick or something just a bit bigger than your foot, that is about half the height of the first stair. It is much easier to step up onto something shorter, then you're half way to the bottom stair. Then put one up at that top stair too.
We considered moving into a home with stairs and because of the curve we could not put a chair lift there. I was going to have my husband build permanent wooden blocks onto each stair making the height of each stair half as tall. It does make more stairs to climb, but makes it so much more manageable!!!!
Luckily we did not move into the two story home, but this current home has 2 tall steps on the front porch and I had him place square cement bricks that are about 3" tall and about 7 inches square. That helps me get up onto the tall step much easier!

I hate stairs too!!!!! If there is a rail or wall for me to just gently put my fingers on to help balance me I'm fine. (Usually I need more than a slight balance, I use the wall to push against to help me get up) But if there is not a rail I PANIC!!!
Sarah, thanks for the input. I guess great minds think alike! Indeed.....I have done the same thing you did. 3 years ago I made a couple of 3" high wooden steps which I used as "half steps" at my back door. Together with grab bars bolted to each side of the door this system worked for a while.

Unfortunately I am now at the point where my legs will barely support me. There's not near enough strength to lift me even up a 3" step. I still get in, but my wife or daughter must grab my belt or pants waist and assist me by giving me a boost. It only takes 10-15 pounds of lift on their part but it's enough to get me in the side door.

We are definitely looking at buying or building a fully accessible, zero step home very soon.

Mark

 
Old 03-10-2011, 01:15 PM   #13
Junior Member
(female)
 
Join Date: Nov 2007
Location: CA
Posts: 17
sarahJ74 HB User
Re: Stairs... I hate 'em!

A zero step home sounds nice
Thanks for all of your posts and comments. It makes this such a nice place to come and feel "normal"

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Just fell down the stairs, who has feet/body pain in the morning? gorgee Fibromyalgia 13 03-14-2008 02:51 PM
Fibro and Stairs builder Fibromyalgia 10 10-25-2007 08:19 AM
Using Stairs After Laminectomy Surgery Baybreeze Back Problems 7 08-07-2006 05:59 PM
I walk sideways down the stairs. keithp Foot & Ankle Problems 5 06-11-2006 01:47 AM
Hate it cberg Addiction & Recovery 7 03-04-2006 09:25 PM




Thread Tools

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 02:34 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!