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:
I am new to this board, but as I read your posts I feel like I am reading my own diary of five, ten, fifteen years ago. My name is Jodie and I have Miyoshi Mypathy and I am 40. I live in a fancy wheelchair that reclines (because my feet swell if I sit still too long) and raises my seat six inches (because I can't lift my arms over my shoulders) after that I sleep in a hospital bed (because I can't move in a normal bed on my own) It is late here, I have a sinus infection and feel like crap, so keep in mind all I say is tempered by that. I have found that it is vital to share your frustrations, calmly, with your loved ones. They love you. It hurts them to see you embarassed, hurting, socially uncomfortable, etc. Don't shut them out, but be in it together. Some of my best friends and I have laughed so hard at people eyeballing me trying to figure out what is wrong with me that I have wet my pants. And those same friends, helped me change my pants. Many of you talked about what others think. That is hard, on your own. Use your allies to laugh through the hard times. I tease my friends and family about not having any pride left. They know it is not true. They know that I am secure enough in their love that I can let them see me with dirty hair, in clothes with food stains on them or that I can ask them to help me in the potty or to clean my house. Asking for help was the hardest obstacle for me because I had always done for others. God will give you special ways you can give back. My house is the fun house. The kids all love to come here. I make them wait on themselves, and me. lol - but they love it. As your disease takes more from you, (that is the cause of my bitterness - I adapt to life one way and then it takes more away) make sure you don't put unrealistic expectations on yourself. Let others help. They want to. I recently encourgaged my son and husband to go on a vacation without me. It is so much drama for me, for my husband anymore for me to go anywhere overnight. My 8 year old, looked up at me and said so sincerely,"we don't want to go anywhere you don't go." I am the most blessed of all women. To all of you younger people, GO, DO NOW while it is easier. YOU WILL NEVER HAVE THE MONEY. Enjoy your mobility.
You said it all! You sound a lot like many of us here. I won't try to speak for others but I would not trade my life for a healthy persons if it meant being unhappy. I'd rather have my family, friends and my happiness than to be unaffected and lose what I have. I'm 47 with an understanding and encouraging wife and 2 beautiful daughters 16 & 19. Although I have an undiagnosed type of Limb-Girdle, I've been very pro-active in my diagnoses and treatment. My MD doctor and I have a great relationship. He always calls over the group of interns while doing rounds at MD clinic and says "Here's my main man!, The one that does all the research". Doing research, collecting data, keeping notes and drawing pedigree charts is the thing that makes me feel I have a bit of control over my own destiny and that I'm doing something.
You sound like you have a great attitude (though like all of us, I'm sure you have bad days). Thanks for all your posts, I read them all.
PS - read my old thread "Missing the things I used to do" 05-02-2007 It's way down the list. Most of the replies are from adults in our similar situation. (at the bottom of the page, show all threads from 'Beginning' to make it show up) It was a very popular thread. Take care,
Last edited by Administrator; 04-28-2009 at 02:53 AM.
Reason: added info
Hi, i'm Miriam. I was looking for any new updates on LGMD2B, which i was diagnosed with about 3 yrs ago, and I stumbled upon this website. Although i try not to read up on it as much because i feel depressed afterwards, i decided to give it a second shot and im glad i did. Jodie, if you read this, thank you for your honest words, they were insightful and helpful which made me feel better. Personally, I share a lot of the same feelings as many have posted such as anger, frustration, depression, independent-mad-at-having-to-be-dependent. I was wondering, is anybody else experiencing mood swings or any other effect besides the physical ones??
Hello Miriam and my other MD buddies,
I hope everyone had a happy holiday. Miriam, I have been experiencing many low days lately because of the holidays. I wanted so badly to just be able to get out and shop, but for me, everything has to be a "planned event". I missed the days of jumping in the shower and flying to mall if I needed to. So I do get down a lot. I also stress a lot about things because I want things to be as close to perfect as possible for my kids, so sometimes I tend to worry myself into a state of depression. I was having trouble sleeping up until Christmas and afterwards I've been having more peaceful rests. I know I need to stop worrying because I have a great support system but sometimes I just want to do stuff myself so I drive myself crazy instead of just asking for help. That is something I need to work on in the new year. This is a great place to vent and I hope it helps you as much as it continues to help me.
Thanks, so far I have felt good about posting up on this message board. I have read a lot of threads which help to see how others cope and relate to them. Their is something about reading everyones experiences that is comforting to know that we are not completely alone and that there is someone out there who completely understand what we are going through.
Thanks for everyones replies.
It is a comfort to know that others are feeling the EXACT same way as me. It gives me courage
Jodie I loved when you said, "To all of you younger people, GO, DO NOW while it is easier. YOU WILL NEVER HAVE THE MONEY. Enjoy your mobility. "
I needed to hear that. I need to enjoy my mobility and stop feeling sorry for myself. I still have mobility and I need to USE it!!!
I find that my emotions get a little whacky when I am exausted. I just can't deal with things. If three people are talking to me at once, or the kids are fighting I just go nutty!! WHen I'm exausted or fatigued would be a better word, I am CRABBY and I hate that. I hate being a crabby Mom
I get depressed and I have to really think myself through it. I get depressed when I realize I can't do what I want to do ie, keep the house clean and tidy, keep up with kid's schedules, run the tiny errands I need to do and my own hobbies all in one day. I have to tell myself that I have to lower my expectations a bit, do the most important things, do what I can and the rest doesn't matter.
WOW I just discovered this post and it was exactly what i needed to read through, its funny how sometimes when one needs something all of a sudden without effort it is there in front of you.
THANK YOU to all who posted your words are so true and so honest and so ....whats the word ....to read that there are others who think and feel what I am myself at this moment are thinking and feeling is...comforting and adds that little relief that you are not alone.
I cry i get upset i get frustrated I feel a burden on those around me....but those feelings aren't as great (and must not and won't take over) the appreciation I feel for being alive and all the good things around me. . . . . . . . .
SO all I can say is THANK YOU.
It seems that with LGMD there are so many issues to deal with. It is not a disorder that effects just one part of ones life, but all aspects of it. You have a positive attitude for the most part, you are looking to the future with hope. I don't know what is wrong with my legs yet, and so my future looks kinda bleak.
The emotions I am going through are fear, depression, anxiety and wondering what my future holds as far as whats going to happen to me. Reading the various postings on this board, even if the docs figure I have another disorder, gives me strength. I think of how all of you deal with your problems, and that is encouraging.
I have so many symptoms of LGMD, but getting a diagnosis is hard. The movement disorder doctor seemed to have thought my problems were all stress related prior to even doing any sensory testing (which he didn't do much of), so irritation is something that I am feeling. Yes I do have stress, but not enough to give all these leg problems for so many years.
glad you are getting a scooter, and walkers are not too bad. I used a walker and wheelchair for a few years due to leg surgeries gone wrong, and I was self conscious too,but the freedom of walking aids and especially the scooter I had was so nice.I hated being pushed in a wheel chair, but the walker wasn't so bad because you control where it goes
Iíve always been the humorous and positive person but things are changing
Iím a single mom and my boys are getting older. My eldest is going to University next year and my youngest only have two years left before he is off as well and then Iím alone
Iíve progressed to the stage where getting up is only possible in my bathroom where I thought myself to get up.
Any other place in my house is impossible. I can still walk but without shoes and only in my house where Iím familiar with the ďfeelingĒ of the floors
I have to use a scooter when I go out. I cannot use a bathroom anywhere else and my list goes on and on
I need constant help and that has fallen on my boys shoulders when they here.
Weekends when they go to their dad Iím so restricted what I can do that I have to use a chair to move around the house and I hate it.
Iíve fallen 3 times outside after I drop the boys somewhere and return to an empty house. The one time I went to fetch the boys when my leg gave in half way down a ramp towards the garage and I fell on my back with my head facing downwards on the ramp
I tried to get myself up into a sitting position and I couldnít. To make it worse it was midnight so there was no-one outside to help me.
I always take my cell with me wherever I go and started phoning all my family members and this evening no-one answered their phones!
I tried to phone the boys to tell them what happened and that they will just have to wait until I can reach someone to come and help me and they didnít answer their phones either.
After 40 min laying in the cold a neighbor returned home and I shouted for him to come and help me. To make it worse I didnít even know him
Iím getting scared walking to my car alone that I take it step by step holding onto anything for balance.
I refuse to give up walking as long as I can but I am hurting myself physically. My back is giving in and I know I will have to stop doing what Iím doing
The one time I sat down on my couch and just as I was halfway down I realized I forgot my chair that I use to move around the house. Well I couldnít prevent myself from sitting and again I had to phone a family member to come and help get me up
I hide my feelings from everyone and I do not discuss my MD with anyone. I cannot change the fact I have it so why talk about it
Iím getting angrier and angrier as they days go by and cry for nothing. Iím changing into a person Iím not.
I would give up my house, car, and possessions everything just to be healthy again
I'm turning 40 in three months time and even this big day I cannot organize anything myself to celebrate
I even feel guilty by sharing my anger and depressing stories on the board
The following 3 users give hugs of support to: mandy37 2807 (03-30-2012), Dreaman (04-11-2012), Greetings (03-30-2012)