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Old 07-10-2010, 08:19 AM   #1
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New here, but not to the world of MD

Hello everyone, my name is Chris, I'm 27 years old and have been living with MD now for roughly 13 years or so. At the time it began, during around 9th grade I noticed I was beginning to have trouble getting up the stairs in my school as well as my house. I didn't think much of it at the time and just figured I was out of shape and needed to work out. As time went on it became more noticeable and I began to suspect there was something seriously wrong with me. At the time I decided not to tell my family about it out of fear of going to a doctor and being told something I didn't want to hear. So I lived with it, and kept it to myself through all 4 years of high school. The daily routine of going up and down steps at school kept my legs working okay at the time, but once I graduated and stopped doing 3 flights of stairs up and down multiple times a day, I began to really struggle doing steps. At this time, around 18 or 19, my walking in general began to suffer as well. Now allow me to preface this by saying I've always walked on my toes from the time I began walking and was also slower than other kids when it came to running or even riding my bike. I also waddled slightly, this however became more pronounced as I got older and the disease began to take shape.

Fast forward a few years after high school and I was working at a hospital out patient chemotherapy unit doing custodial work as well as being responsible for going 2 block away to the main hospital to get blood from the blood bank for patients who needed transfusions. My boss clearly instructed me to walk, but the hospital was on a huge hill and I could not walk up the hill, so I began using my car to make this trip. When I was asked why do I use my car when I was told to walk because of the liability of me driving, I just said I walk slow and wanted to do my job quicker. I was too ashamed to say that at 20 years old I couldn't walk 2 blocks and walk up a hill. I eventually lost the job due to my "slowness" apparently I took too long to do my work because I just couldn't keep up.

Gradually as time went on, I began to fall more often and lose my balance easily. At my next job which was putting away books at a library I fell a few times and always blamed it on my "bad knee" until one day I fell and they forced me to fill out an incident report and go to a doctor on workman's comp. This was in April 2005, so on April 15th 2005 after nearly 10 years since the symptoms began, I was officially diagnosed with LGMD. The news came like a tidal wave, like I had just been hit by Mike Tyson, I was just silent, the doctor rambled on about things to do to follow up with this doctor and that doctor, and all i could hear was you have what I believe to be a rare form of muscular dystrophy. Finally I left the office and called my mother who was devastated, but I assured her I was fine and everything would be okay, when I knew it wouldn't. My job told me not to come back to work as well, saying I was too much of a liability and since I was part time, they were letting me go.

And so begins the downward spiral of this life I've been cursed with, at the time of the diagnosis, I was told my condition is such that I should have been in a wheelchair already by that point, the doctor actually said to me, I don't know how you are still walking, your weakness is severe. I refused a chair and vowed that as long as I could muster 1 single step I would continue to walk. The last 5 years since then have gone downhill and fast, my girlfriend at the time left me in June 2007 with her parting words being that the man she was leaving me for could walk. The exact quote is " You can't do anything, you never want to go anywhere, at least he can walk"

As my condition has worsened everything I've been so strong willed to keep doing has been taken away from me, sitting at the kitchen table is one, I haven't had a meal at my table in 4 years, I have to stand at the kitchen counter to eat. I haven't been able to go out to eat in just as long. I can no longer go to the movies or to stores, the fear I have of curbs, and stairs and tripping on rugs is all such a burden on my mind. I've been battling depression for a long time, well over a decade now and the MD has just made it worse. My family has written me off saying it's my problem, deal with it, there's people who will take care of you. The only family member who has helped is my mother, but I don't live with her because her house is inaccessible to. For the past 5 years I've been struggling with 14 steps at my grandparents house, I've fallen down them a few times and always dusted myself off, until 3 months ago. I took a fall from the top step and managed to save myself from going down the steps face first, I was able to shift my weight as I was falling and fell backwards into a metal door and door frame headfirst.

I managed to finally get up after crawling for an hour to the sofa and pulling myself up on it. Since then I have not been able to leave my house because every time I get to those steps my legs feel weaker and begin to shake. This disease has finally gotten the best of me and my mind can't will itself to keep going so I haven't been able to leave my house in 3 months and without any family who cares I'm left here to stare at these 4 walls in my bedroom day in and day out. The last bit of freedom I had which was driving has been taken away from me because I can't leave the house, at least when I was out driving I was "normal" and no one could see the way I walked. Now I have to stare at my car sitting in the driveway from my window. I can no longer get into my shower, which has been going on for a year now, so I have to wash myself from the sink with wash cloths. Getting up from the toilet is a nightmare because it's so low, getting out of bed is harder too.

At times I'm still in denial about the whole thing, other times I feel I've come to terms with it, but the biggest blow is when you tell your body to do something and it just can't. To have a mind that still functions properly it's so frustrating when your body is useless. Sometimes I wish MD affected my mental capacity too, so I wouldn't have to sit here and know I'm slowly dying.

Well sorry for the novel, I just needed to vent to people who know what it's like.

Last edited by Soullessone; 07-10-2010 at 08:26 AM.

 
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Old 07-10-2010, 12:40 PM   #2
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Re: New here, but not to the world of MD

Chris,

Wow, you've really had a rough ride. I too was in denial for many years, and should have gone to a Dr long before I did.

I am not going to get into all the details, but you may be able to read my first post if you scroll back in the messages until around May or June of 2007.

Feel free to vent anytime you need to, that is why we are here. There are some really great people on the board!

P

 
Old 07-11-2010, 02:54 AM   #3
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Re: New here, but not to the world of MD

Hi there

Reading your story is much the same as mine although the lack of arm strength in sports landed me in the dr's office. I was told in such a cold manner that I have MD (didn't have a clue what he was talking about) telling me I will be in a wheelchair in 5 years time. I was 19.

I lived in denial for such a long time and I know how you feel. I am fortunate that my family helps me but in the beginning of this MD crap they never bothered to help or even ask me how I was doing. They lived in denial as well.

I think we all wish that our minds have MD as well to make it better to cope with. The acceptance is such a looonnnggg progress even the smallest think gets us under.

I'm a single mom with 2 teenage boys and if it wasn't for them I would have given in long ago.

I have the same fustrations as you have - I cannot sit at the kitchen table I have to stand the same as you and then backpain starts creeping in.

I've modified my house so I can make things easier for me. I've placed railings in my shower and lowered the entrance to the shower that I only have to lift my leg a little bit. I've placed railings at a level by my toilet so getting up is much easier otherwise I will be stuck there untill somone comes and help me - nighmare...

I've placed a ramp outside my front door with a railing to get to my car and although I have this terrible fear of falling I actually give a silent prayer to get me to the car safely

I have an absolute fear of stairs and I think we all have them They might as well place Mount Everest in front of us and at least we will have accomplished something right? My parents have 6 stairs in front of their house and I offered to build a ramp with a railing for me to get into the house without having a mild heart attack everythime I have to get up those steps

I gave my ex the freedom to make it easy for him to leave me because he could not cope with me having MD - It might be normal for abled body ppl not to be able to cope wih ppl with any form of disability. I could have been the same - you never know..

I've fallen so many times (Read 'Ouch") that I've lost count and that I've never broken anything is a miracle. (Except for a toe that is still recovering)

We all deal with this in different ways and my way is humour. I have to admit when I'm alone at home I confine myself because I cannot go anywhere alone I always need help and I hate asking anyone for help

I bought a scooter some time ago - the best investment I've made in my life. This thing stood in my garage for over a year before I accepted that I needed it and now I don't go anywhere without it. PPl do stare at me but that's ok - I have something they don't have -

Maybe you should start accepting that you need a wheelchair to cope with from now on and go to a centre that can help you to show you how to use this thing to make live easier for you.

I'm having more and more trouble getting up and had to phone my parents twice in the past 2 weeks to come and help me up. In the past it took me about 45 min to get myself up onto the sofa but now I cannot cope anymore

My left leg is getting so weak that I fear not being able to walk at all anymore and then my life is going to be absolute hell. Now I have another hurdle in my way and that is starting to accept being confined to a wheelchair.

Untill that time I have a few more falls to handle and then it's time to go to a centre and learn how to cope using a wheelchair permanently.

Sorry for my long novel and maybe this "sob" story will be some kind of (don't know what acceptable word to use here)

Like my boys say - your body might be useless but your personality has legs.

 
Old 07-11-2010, 03:39 AM   #4
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Re: New here, but not to the world of MD

Thank you both for the replies, Mandy I know all too well about the back pain, I injured my back when I was around 10 years old just being a kid and ever since then my back cracks and pops when I move or have been sitting too long. Add the strain of the MD to the equation and you can probably guess at how much pain I live with daily.

I find it funny how people who don't have MD say it isn't painful, including a dr. at a MD clinic who I spoke to once. No the actual MD isn't painful that is true, though there are times my muscles hurt, the pain comes from the fact I have to compensate for my lack of balance and weakness. My joints are all screwed up from my posture and from my constant falls. My legs progressed faster that my arms, in the early years of the disease i used my arms to pull me up steps holding onto railings, now I can no longer do that. I haven't been able to weigh myself in a few years because I cant keep my legs closed and the scale is so tiny I'm afraid to lose my balance, but the last time I weighed myself I was around 270. I'm 6'1'' and weigh at this point probably just shy of 300 lbs which might as well be a ton of weight with MD. The strain of getting this weight up and about is really hard and damn near impossible now.

But aside from the things I have to cope with on a daily basis, the fact that I think I will be alone for the rest of my life because no woman is going to want to date a nearly 300 lbs crippled guy is a tough pill to swallow, especially when I'm still only in my 20's. I've been in a relationship with someone online for a little over 2 years now and I haven't been able to bring myself to tell her about my condition. The reason is because of what my ex did to me because of it, but now over 2 years into this new relationship and real feelings and talk of our future together creeps into the conversation more and more, I feel so guilty about keeping this secret that now I don't know how to break the news or if I even should, sometimes I think I will just end the relationship if I have to to prevent her from leaving me if I tell her about the MD. My friends say she might not care because she loves you and will take care of you, and maybe she would want to take care of me, but not knowing for sure and not wanting to feel that rejection again is hard.

As far as making my house handicapped friendly, my family wont allow it. I'm not allowed to install a stair lift or any other device to help me, even though I have constantly said I would pay for all of it. They wont even let me put higher railings on the steps so I have something to grab onto when I get to the top step. Not that any of that matters now, since I can't leave the house anymore. You would think after seeing me stuck inside for 3 months straight they might finally give a damn and say we need to help him, but no, I'm still left to fend for myself in a world not designed for us.

Last edited by Soullessone; 07-11-2010 at 03:40 AM.

 
Old 07-11-2010, 07:18 AM   #5
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Re: New here, but not to the world of MD

Mandy: I need you to cheer for Holland in the finals today, Denmark sucked, the US got screwed, and I cannot forgive Spain for sending Denmark out of the European Cup and the world cup in 84 and 86!

Last edited by NP74; 07-11-2010 at 08:34 AM. Reason: Adding info

 
Old 07-11-2010, 01:40 PM   #6
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Re: New here, but not to the world of MD

Chris,

I cannot stress this enough: I UNDERSTAND COMPLETELY !!!!

My name is Mark and I have LGMD. I am 49. My dad died from it and I am paralleling his symptoms and problems exactly. I have posted hundreds of times on this board about my fears, frustrations, hopes and treatments. If you left click on my username "michigani" you can read all my other posts.

My school days were yours. You described my teenage and twenty-some years identically with just a few exceptions. I am so sorry about your girlfriend and the family members that aren't there for you.

My house was becoming a prison. I live in a colonial with 13 stairs to my bedroom and two 8" stairs to get in and out. I felt trapped here about a year ago and got very frustrated and depressed. But I believe that there is a solution for almost every problem. I "built" my own 10" custom toilet riser from two 5" risers. I've put grab bars around my house. I've put double railings and grab bars where I need them to get up my stairs and most recently attached a grab bar horizontally on my back door to get my self in and out of the house. I drive my dodge nitro with hand controls but getting in and out of it and in and out of the house is the HARD part. I also got a scooter over a year ago that gets me around town in nice weather.

My doctor also says "how are you walking???!!!!" He's shocked I still am. I have NO leg muscles at all yet I can still walk with my knees locked and hanging on with both hands. I can't carry anything while walking.

I could go on forever. But it's all in my other posts, especially the threads started by me.

We can't cure you here, but you've found a place where we all understand. WELCOME! And I hope you'll post more.

Mark

 
Old 07-12-2010, 01:52 AM   #7
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Re: New here, but not to the world of MD

Howzit - my team was Spain just because they have sexier guys than Holland regardless of the importance of country. The spirit in SA was amazing except for the blowhorns that drives you insane -
Pitty SA didn't even make it past the 2nd round but wait in the next 20 years we might make it to the semi's (LOL)
I would encourange anyone that hosts the world cup in any event to go there - I of course could not because of the vvolume of ppl at a fan park and the fear of someone asking me for a lift on the scooter made me stay at home
My son went to 1 fan walk (where 30+thousand ppl get together) and came hme miserable because Holland lost - he was in such an angry mood - next time hun
Well its all over now and maybe some ppl will come back after being here - not a proud SA yet but slowly getting there

 
Old 07-12-2010, 02:19 AM   #8
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Re: New here, but not to the world of MD

What do ppl actually know what we go through - yea yea all talk sometimes.

I cannot believe what your family is doing to you - it is disgusting. It's like mental and physical punishment!! You should sue them for their attitude (don't know how you do this but there should be a way)

I am so fortunate to have the family I have. I can count my blessings after reading the selfish attitude of your family. If I was there I would defend you all the way and a tongue lashing would be in order.

I don't think a relationship via the net or any other way using a PC is healthy. I've done this and kept my MD from anone I spoke to. That time I was more active than now and could walk unassited but the same thing happened to me and that is when the guy actually saw my body and how I walk I could see the dissapointment on their faces

Things didn't go beyound that. I have the face that attracts a guy but the body doesn't match the face. They do not see the personality immediately but that doesn't count it seems like.

I have emmense fustration when it comes to men. I haven't been on a date for the past 8 years because I keep to myself but the longing for male company is overwhelming at the moment and I do not want to be alone.

Maybe this girl that you talking to has a different attitude. You do get the good ones out there but it is important that you do tell her about your condition before it get's to far and feelings can be hurt.

I believe that love should look beyound physical needs but then again I don't know because I haven't experienced love, real love at all.

Something real stranged happened to me the other day and I'm still amazed my perception of ppl. I was at a shopping centre and at a meat section there was a guy in a wheelchair with his nurse. He must've been complete paralized as you could see it in his arms and hands the way he pushed his wheelchair.

I was in my schooter and as always disabled ppl seem to always greet each other.
When I looked into this guys eyes and saw the "life" in his eyes my heart starting beating so fast and I actually got the "butterflies" in the stomach.

I blushed (done that last in high school) and when he passed me I actually looked back the same time he looked back. My boy insisted I go get his number but I cannot appoach a guy (old school) and maybe he would think that I had the pity attitude.

I kept on thinking about this guy and if we could be a couple and how could we assist each other. (yea my mind going nuts) My mom said that he has a nurse anyway so that would not be a problem (lol)

I would never have guessed that I would have this attitude towards another disabled person but I had. This made me think that a abled body person could actually feel this towards us. You never know

You should go out with your friends and try and get a positive outlook on life (know this is not easy) and not be embarresed if they push you in a wheelchair. Your eyes speak volume and a smile on your face could work miracles.

I sincerely hope you get a bit further in your quest for acceptance. I can read the anger in your replies and I can imagine it is fustrating to live with this deamon every day of your life.

You have to get past that family of yours and get a medium between the you and them to try and sort this out.

Look in the mirror and smile at the person in front of you because you have your personality that counts for you even if it's a bit negative at the moment..

 
Old 07-12-2010, 06:54 AM   #9
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Mark,

I'm sorry to hear of the loss of your father to this damn disease, as well as hearing your rate of decline as far as walking is concerned. I guess I should consider myself lucky that once I am actually on my feet and standing, I can still walk unassisted ( at least at home where the floor is flat) You mentioned you drive a Nitro ( I'm a huge guy car, have been since literally birth ) and I'm just curious on how you manage getting in and out of it considering the height of it and the narrow door openings. I used to drive 4 door cars until in 2006 when I bought myself a Buick Riviera because I enjoy full size cars and needed a coupe for the wider door opening. The downside is the doors are very long and heavy and make getting out in tight spot impossible.

As far as the modifications you've made to your home, I only wish I could have something like that. I've been out of work since Feb '07 when I was working as a dispatcher for AAA from home. So I've been making due on dividends I earn from some stocks my grandmother on my mother's side bought in my name when I was very young. The amount of dividends is about 600 every quarter, and yet due to the total value of the stocks I've been denied health coverage numerous times. I'll be honest I haven't actively pursued it again in a couple years now because I just got so tired of being turned away. Just like with my family.

The last time I went to a doctor, which happened to be at an MD clinic, I asked about medication for my constant back pain and leg pain. His response was MD is not a painful disease and medication would only cause me to form an addiction. I mean I'm in pain and you're telling me I'm not supposed to be? Well tell that to my damn body then doc, cause it has other ideas about what MD is supposed to be.

I've only allowed myself to be pushed in a wheelchair a couple times by my best friend who I trust with my life ( and who has picked me up off the floor numerous times by himself ) These times in the wheelchair were mostly at large places, like casinos and stuff like that where walking was just too hard, especially on those soft padded rugs you find in most casinos. Now while I admit the ease of mind I had during that time of not having to worry about every little step and path to walk down was most welcomed, I still punish myself into not giving in and buying a chair or scooter yet. I know I'm making this harder than it has to be on myself, but I'm just too damn prideful for my own good sometimes, and in my mind despite how many years it's been since this all began, I'm still strong.


Mandy,

If you only knew the half of it as far as my family is concerned, lol.

My father and I aren't close, we have always butted heads, which he fails to realize probably stems from the fact he only knew how to talk to me with his hands when he was mad as I was growing up. Not to get into a long drawn out life story here, but I'll just say we aren't friends. With that being said, not once in the 5 years since I've been diagnosed has he offered to help me in any way. He hasn't even said do you need a ride to the doctor's office, or do want to talk about it. Nothing. Last 4th of July I asked him about building an apartment downstairs in my grandparents house so I wouldn't have to do the 14 steps anymore, his response was I'm busy right now, we have family over and you call me to ask me about this now? I said to him, dad I fell down the stairs last night backwards, I fell down 6 steps backwards, I can't do these steps anymore, and he's complaining cause I disturbed him during his 4th of July family gathering.

Yeah, thanks dad.

 
Old 07-12-2010, 08:41 AM   #10
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Re: New here, but not to the world of MD

I only have a few minutes, but wanted to chime in on something in this thread.

I've been diagnosed with a form MD since about 2001. Exactly what form I have we have yet to determine. I have significant muscle pain, especially in my legs. My MD doctors never blinked an eye when I complained of it. They "get" it that while MD may not cause pain, compensating for the MD DOES cause some people significant muscle pain.

I am on two pain medications. I started out on one and when that one didn't keep giving me relief, I was given a second one to use as well.

And for the most part, I am doing much better.

Chris -- your story upsets me so much on so many levels. I'm telling you my experience with pain to let you know that not all MD doctors are like yours. I have two neurologists and both of them are fantastic. Both of them understand about the pain and are okay with trying to keep it under control.

Last edited by Madalot; 07-12-2010 at 08:42 AM. Reason: Typos

 
Old 07-12-2010, 08:44 AM   #11
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Re: New here, but not to the world of MD

Hi Chris,

My Nitro is the perfect height. I am 6'-0". I can open the driver's door and back-up to the seat which is just at the bottom of my butt. I can sit down then using both hands, lift each leg in. First the right then the left. My arms are still pretty good shape, maybe 50%. Legs 10%. At that point I use the hand controls to drive but I often use my right foot on the gas pedal. Getting my foot on the brake pedal is out of the question. I can get in and out of mini vans also. Cars - no! And high trucks - no!

Almost all of my home modifications are inexpensive things like grab bars and home made items. I've not had anything paid for by insurance.....they always say "no". I saved and bought a lift recliner chair for $800. That was the biggest expense so far. I could use a major house modification or better yet a whole new ranch house.

I also bought an aluminum directors chair with a 30" seat. I take this all over.....picnics, the park, peoples homes, etc. Comes in very handy. Well worth the $75. Got it from Tall Paul's Tall Mall. Disabled people are always asking me where I got it.

I'm sorry about your pain. For the most part MD is not painful in itself but there is certainly pain caused by inactivity and shifting bones and organs because there's no muscular support. Some doctors just don't get it. I've been fortunate to have no real pain issues, just minor aches and pains some days.

Sorry about your dad. My dad and I WERE friends. He didn't live to see me get this. He would have been devastated. But I'm glad you have a good friend. So do I. He takes good care of me. We have lunch once a week. PS - I can't walk on padded carpet at all without a walker.

Take care,

Mark

 
Old 07-13-2010, 12:44 AM   #12
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Re: New here, but not to the world of MD

Hi there

I asked my mom why a parent would respond this way and she said that they do not want to accept that their child has MD and the way they cope sometimes is with hate, dissapointment and anger.

This is actually so sad as we experience the same feelings but we express it by wanting to talk about it to no avail.

I can c that you are so angry about your situation and rightfully so but on the other hand acceptance is such an important part of your recovery. I've lived with this deamon for half my life and acceptance is sometimes something I still cannot accept and when I fall I have hatred towards myself.

I actually hate talking about my feelings to my family because the last thing I want is pity. I hate ppl doing things for me and I believe that I can still do things for myself regardless how hard it gets.

I still cook, clean etc although the back pain is sometimes unbearable and the spasm I experience is so painfull that I sometimes cry internally. I cannot show myy kids that I have any pain due to this because that will influence their trust in me to be able to take care of them

I hide a lot of feelings and it doesn't bother me anymore. I have this and I cannot change it so why dwell on this and be angry all the time. it is a waste of time and I can do much better things with my life and rather be happy.

Pain - of well, I've been on pain killers many years ago but that made me sick more than anything else and well there is the financial aspects to this as well.

I've learnt to meditate the pain away and this works for me. Close your eyes bear the pain and think it away. Not an easy way of dealing with this but it helps me cope.

I refuse to go to dr's and confirming my status. I don't even know exactly what medical terms I fall under but what I know is that I have a combination of 2 MD's and that is all I want to know. I want to live my life not obsessing my medical status and that again helps me cope.

You can vent all your anger on this site and that helps to scream as much as you want to and we are all here to listen.

Mandy

 
Old 07-26-2010, 01:23 AM   #13
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Re: New here, but not to the world of MD

Hi Chris

Just wondering how you're doing. You've been so silent and no recent posts

Hope you well.

Mandy

 
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