I find that I'm dealing with myriad emotions concerning my LGMD. The biggest ones being: Frustration, Fear, Depression, Embarrassment, Anger, etc.
Of all of these I think frustration is the most predominant. I got used to not doing the big stuff like sports, hiking, etc, but it's the stupid little things like not being able to get up the step into my house, or that I can't bend over to pick up a small item I've dropped. That's the stuff that makes me grit my teeth and growl . My family says "don't get all upset, we'll help you" but they can't really feel this.
Second is fear. I constantly wonder what the future will hold. I'm not so worried about myself but what this will do to my wife and kids. I feel bad it's affected our vacations, home life and future.
The good news is that the other emotions: depression, anger and embarrassment are all very mild and I barely feel those things. Maybe once a month for a few minutes. And of course there's always "Hope". That's the big one that keeps me going and helps me keep a positive outlook. I have to believe that the cure will come in our lifetime. Hopefully for the kids first, and then shortly afterwards we adults.
First let me say, you are a very humble man! The part in your post about helping the children with this disease, then the adults, proves to me that you are an angel!!!! As you know, I do not have MD, but my 5 year old son does. So I know I don't know what you are feeling, but I have so much pain, frustration and fear over this disease that it really gets me down at times.. He will be starting kindergarten this year and I am absolutely terrified of what some of the kids may say. I can't bear the thought of someone making fun of him, but I know it will happen, because it already has a few times and it literally breaks my heart, because physically, there is nothing I can do to help him.
But you keep your head up!!! Let your family help you all they want, and try not to be frustrated by it. It's obvious they love you very much and they want to help. We all must try to remember that strength is not really found in your muscles.... but strength lies within our hearts!!!!!!!
I hope you have a great day and maybe, sometime soon, that "HOPE" will become a reality for everyone affected by this disease!!!!
Thanks Lori for the uplifting reply. If I was next in line for the cure and there was one dose left to give out, I would let Caleb go ahead........I have stood on the rim of the Grand Canyon. I've hiked the Appalachian Trail, run the bases, and held someone's hand walking a sunset beach. Your little boy deserves all of this. And I believe he will know these things someday.
How about a little self pity and jealousy? Sometimes I wish I could be just like "everybody else", rather than be dragged down by such a rare and life-altering condition.
I will also say that, since I started using a wheelchair, I've developed a lot more faith in humanity than I had beforehand. The wheelchair make it unambiguous that I have a physical problem (rather than the "normal" appearance masking profound weakness, which confused people). And the many, many people who hold doors, smile (not in a piteous way), offer help, et cetera is quite remarkable.
The Following User Says Thank You to npwnry For This Useful Post: imax3d (02-20-2012)
Oh yeah, I've felt both of those too. I watch people jump out of their car and run into a store and I think, "Gosh it must be nice to do that without thinking". It's a major event for me to get into a store.
I've noticed as well that it made a difference just using my cane. Without it people would think I was drunk or just "weird". The cane makes people realize I have a problem.
The Following User Says Thank You to michigani For This Useful Post: imax3d (02-20-2012)
Your post about Caleb, made me cry. THANK YOU for being not only an angel, but a hero as well!!!! Your posts on this board are so inspiring and encouraging to me, and yes, hopefully he will get the chance to do lots and lots of things!!!! I can only imagine the frustration all of you are going through with MD, on this board. As I've said in some of my previous post, what frustrates me is how people, my friends, and some family members, just don't understand this disease. We tell them what will probally happen with Caleb, and they say, "You've got to be kidding", , it makes me so mad when they say stuff like that. They just don't understand there is NO "kidding" with this disease. But I am learning to deal with these people. People who have MD or have a child with MD, need someone to encourage and support them, not tear them down by saying stupid stuff!!! That is why I come to this board and read so often, it is a place I can go and understand and be understood.
Keep your head up high!!! Even though at times you feel down, you have no idea how many people on this board you encourage!!!!
Have a great one
I've read some of your previous posts, and I think I read where there was no family history of MD in your family??? That is one frustration I'm dealing with. My husband and I keep wondering where did this come from?!?! I know it's a genetic mutation thing, but it is so frustrating!! Are they doing the DNA test on the two of you? It is frustrating being told you have one type and then they go tell you later that it could be another!! Maybe they will give you a definate answer this time. This disease is so tricky. My son shows all the presenting signs of duchenne, and that is what the neuro told us it probally was on the first visit, but DNA and muscle was negative. But they think the LGMD he has is one that is similar in coarse to duchenne, but not knowing for sure is so frustrating, I don't want to get my hopes up, but we are checking into doing more biopsy testing, since his neuro said they did freeze his remaining muscle tissue.
I've said it on here before, but I'll say it again. I hate the reason I'm on this board, but I feel so blessed to have all of you to turn to, just to talk and vent, because ALL of you understand.
Hope everyone has a great day
The emotions im feeling at this very moment is embaressment and self-concious because my knee gave way outside and i've just fell while i was talking to an elderly neighbour and i had to lean on him to get up so i felt i bit stupid because just out of the blue i slammed down but he was ok with it and helpful but when i got in the house i had a good cry kinda makes me feel better. Im feeling self concious because just now i have no aids so i kinda of appear "normal" so people act really weird when i say i cant get up the stairs or i cant pick that up or i fall and i look drunk struggling to get up they look like what the hecks up with her.
The Following User Says Thank You to Broxy For This Useful Post: imax3d (02-20-2012)
Broxy, I understand COMPLETELY. I lived in horror of falling or climbing stairs while i was still less affected. I thought "I'll die if I fall at work or in public because people don't know yet". It got much easier just using a cane. That by itself was enough to give people the message that I had a problem.
Also I get frustrated when an 80 year old blows by me on a set of stairs. And...I've been accused of being drunk by more than one stranger. I feel for you.
Check my 'between a rock and a hard place' thread.
Yea, frustration is what I'm feeeling. I walked around in a daze for a few days just shaking my head. My husband won't talk to me about it, says "lets just wait for the results". I knew something was going on with Danny and thought I was prepared but when they send the MD representative in to talk to you it becomes all to real.
In reference to Mark and Broxy,
I AM at that stage where people are always looking at me with "that look" of what's up with her? Then I was going up some stairs obvious difficulty the other day and my friend says "is it really that bad?" I wanted to say "No, I'm just practicing for when it gets worse!" I have seriously thought about getting a cane even though I don't yet need one just to let others know I'm not drunk or on drugs AND maybe they will be a little more considerate.
I have seriously thought about getting a cane even though I don't yet need one just to let others know I'm not drunk or on drugs AND maybe they will be a little more considerate.
I have thought about that too, even though i dont think it would help me any, it would just show people that there is something wrong and im not just stumbling and struggling for nothing (and not drunk).
At first I was embarrassed to use the cane. It just felt so weird, like it wasn't natural. And I imagined a hundred eyes on me and people thinking "what does HE need a cane for?" But you know what, that was all in my head and now I think nothing of it.
I'm moving into the next stage where i need a chair or scooter. I'm going through the same phase all over again but I know I'll get used to that as well.
I think thats the biggest thing is what other people think and it really shouldn't be but one of those things that can be hard to get past. Someday i will be like stuff them and then just one glance from someone i will be paranoid again "they were looking at my legs, looking at the way im walking" I admire you Mark it must have been hard at first using the cane and now the scooter or chair, i will probably feel exactly the same way when i need an aid, im bad enough just now walking in front of people.
How do I describe the feeling of having researched Bethlem for a year and half and then the docs tell me It's possible that I actually have FSHD?
Maybe I should have started a new thread. But here goes anyway.
We finally had the appt. for my 10 yr. old son. And the pediatric neurologist thinks he shows more of the signs of FSHD, so they took blood from us both. and now we wait.
Well I got a message from my doctor yesterday-----the blood tests were normal----not fshd.
Well, I guess it's back to the Bethlem dx. My doctor did say that we could start genetic testing. I will be able to talk with him more about that at my next appt. in Sept.
How am I feeling?
Well, I've been using my walker. The cane isn't enough anymore. Again, I was REALLY embarrassed and vain the first couple of times out but it felt SO GOOD to feel like I won't fall down. I feel so much more secure, to heck with the vanity! Falling down in the middle of a parking lot would be infinitely worse.
Those of you that are still a year or two away from this stage, I understand completely!
Also , I order my scooter this week. A 4 wheel Pride Victory 10. I'm looking forward to it. I hope I can get it by late summer or early autumn so I can enjoy some outdoor activities again. I've been kind of down being imprisoned in my house but I'm excited about getting the set of wheels.
Wow, Finding This Health Board A Couple Of Days Ago Has Changed My Life!! I No Longer Feel So Very Alone. I Also Feel Frustration At The Every Day " Use-to-coulds". I Was The Caretaker Of My Family. The One To Jump Up To Anwser The Door, Grab The Phone, Fill An Empty Milk Glass,let The Dog In, Let The Dog Out. Everything! I Hate Hate Hate Hate Needing Help. I Feel My Youngest Son Got Cheated. He Is Now 12 And Doesn't Have The Same Mom His Older Brothers Had At That Age. I Taught Them To Ski, Ran And Played With Them,hiked,camped,traveled, Parasailed, We Would Go To The Park On A Whim. Not So With My Youngest As This Lgmd Thing Is Fairly New For Me (2+ Years Diagnosed) . Also 2 Of My 5 Sons Are Biological So Run The Risk I Have Passed This On To Them As My Father Did To Me. That Is My Biggest Fear And The Reason I Try To Hide My Frustration And Pain From My Boys. I Don't Want To Scare Or Worry Them.
What you just said, above, sounds EXACTLY like something I'd say. It's the same list of things I'm going through at age 47, so I understand completely. You may be able to relate to a thread I started called "Missing the Things I used to Do" Here's a link: