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help advice please ! LGMD 2E
Hi, Don’t know if i am on the right bit or not but here goes. My wife was diagnosed about 8 years since with muscular dystrophy and confirmed just over 5 years since with LGMD 2B at the Newcastle LIFE Center. over the past 2 years or so i have seen lots of changes in my wife but she seems to just turn off from the illness and how its effecting her. In the past 12 months or so she has left me a few times and seems to think that she can beat this. In the past 6 months i have seem major changes in her ability to do thing like steps but i can not seem to get threw to her. In January this year she left me again and took our two youngest children to live with her and my two teenagers have stayed with me. Last week we went back to the Newcastle LIFE Center for a followup and to see how the illness has progressed. When there she had the same tests done as before and her Hips, Knees, Neck and shoulders are now showing a 2 on the tests and they was all 4 the last time and she is now told that she has LGMD 2E and not 2B. I can not seem to get threw to her on anything about her condition and she just refuses to accept that she will need any form of help on anything. Even a few steps into the house is such hard work for and she does not see it. Has anyone else uncounted problems like this and if so how could i make her see that i am hear for ever and that i am not going anywhere. i feel that over the past couple of years most of our problems i can relate to times when she has had problems with things or she feels that its catching up. Also has anyone else got LGMD 2E and been at a 2 in the muscle tests ? If you have i would like to know if anyone can help what sort of time scale are we looking at before she is likely to be in a wheel chair. Any advise would be great and i just need to try and make her see that she can not do the things she could 12 months back or even 6 months back and then maybe we can move forward in our relationship and get back. Sorry if i have out this post in the wrong place but after 16 years together its hard to see the person i love suffer and change all the time just to get pushed away by them.
Re: help advice please ! LGMD 2EComing to terms with the reality of a condition is the hardest part, and often it is harder on the loved ones surrounding the person, having to watch them struggle, both mentally and physically. I am sorry to hear of your wife’s struggles, but really, as hard as it sounds, until she is ready to accept her situation there is little you can do to ease her towards that conclusion. She has to take it in her own time.
Just be ready, arm yourself with knowledge [which you already seem to be doing], have numbers ready to call when she decides she needs that help. I imagine for you, you just want to take it all away from her, and fix it, the MD, the struggles etc, it is a natural reaction, especially when we love the person deeply.
Quite often, what can be seen as denial behaviour, is more a ways and means to have some form of control over the disease, a choice in lifes menu, not allowing the MD to become so consuming you get lost or drowned somewhere in the midst.
Hang tight … it my get worse before it gets better, but it is important that your wife is the ‘leader’ in her condition.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: help advice please ! LGMD 2EYou are doing the right thing by being there for your wife and offering support. AMG is right in that your wife needs to come to terms with it in her own time and way. Its never easy watching a loved one struggle.
Re: help advice please ! LGMD 2EThanks for the reply’s, I thought we had come to terms with the illness over the years and i know i have. The one thing that sticks out is she said to me last week on our way back from Newcastle was why would i want to be married to someone in a wheelchair. This i found amazing and the only thing i could say is that i love you. She seems to think that one day i will see her in a chair and blame her for it. I have all ways known for a the past few years that the day will come and it has never bothered me but the past 12 months see is so vain about how people look at her and treat her that its only in the past few weeks that she has told the people on her college course she has the illness. I would be great full if anyone out there could give me some advice what to do. She will not listen to me or our children about the illness and seems to think she can and will beat it and this is something i have gone along with for a number of years but knowing now that she is only scoring a 2 in the muscle tests that will keep her out of the chair i am so worried about her and yet she still chooses to live in another house with our two youngest children aged 10 and 8.
I understand i need to let her come to terms with it herself and be there for her but how long should i put my life on hold until this day arrives if it ever does. My concern is that i live in a bungalow that could be adapted very easy and she now lives in a house having to do all the house work now and knowing how this tiers her out i think this will only progress the illness more than when we was together and i did most of the house work,
Would be great to here if this is correct or will it not progress the illness. Maybe i am thinking of it all wrong but most days i don’t seem to know what way is up at the moment and i am struggling to come to terms with the results even though i have seen how she struggles to do things.
Re: help advice please ! LGMD 2EI completely understand your wife’s denial of her situation. I was exactly the same. If you admit to it it becomes real.I thought that I could beat it, that I would never need a wheelchair or help, that I could cope. I struggled on pretending I was OK. Eventually though it all caught up with me and I now use a wheelchair. My husband is my carer, which I hate, but there is no choice. I would not be able to cope without him, he’s brilliant. I feel bad that I can’t do things round the house etc but that is how it is. My husband never makes me feel bad, it’s just me. It’s an emotional roller coaster but my husband is always there for me. Just like you are for your wife.
Is there a Care Advisor that you could talk to? Maybe get some literature. You are right it would be better for her to live in a bungalow and maybe she will come to realise this. Hang in there and see how things go.
Re: help advice please ! LGMD 2EI can relate to your wifes self esteem opinion of `’Why would you want anything to do with me when ….”, it is a natural thought and it is equally natural for your response and it is equally natural that if the tables were turned, she’d think and believe the same as you. It is hard, someties you have to ardently fight against something, so that the defeat is real, to reach that point of no alternative.
You are thinking practically and she is reacting emotionally. I wish there was an easy answer for both you and your wife.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: help advice please ! LGMD 2EHi sorry to hear about your wife and your dilema. She is very lucky to have someone as understanding as you and she needs to accept that she has MD and let you help especially for the sake of the young children. This might sound harse but she is being very selfish and not thinking of her family and you! I have a son who was diagnosed with MD at 7 years of age. He found it hard to come to terms with at first, but he had no choice in the matter. He is now 20 and in a wheelchair permantly. He didnt want to go into a chair even at the age of 10! He is a lovely man now and has accepted his condition and has learnt to live with it and more importantly accepts the help he needs willingly. Tell her life is to short and that by having someone in her life like you to stand by her and who is willing to accept her condition and who wants to be with her. Im sorry but time she stopped feeling sorry for herself and put her children first! Hope everything works out for you. Sandra Archibald mother of TJ aged 20 with Duchanne. All the best.
Re: help advice please ! LGMD 2EHi and thanks for the advice, I am starting to think that its gone too fare now to turn back. After living apart for 8 weeks now and her in a house of her own i am starting to get bored of the attitude of i can do it all my self. I know she will come round one day but its how long do i put my life on hold for waiting for the day to arrive. All the time i see her she just makes out that everything is fine and she does not need anyone to help out. For the past months since she walked out she is more bothered about what she looks like and her friends. She has made no effort to care about what i am going threw in all this. She just keeps up with the attitude of its her illness and i don’t think it is anymore. We have 4 children and at the end of the day its me that’s left to pick them up and put them back together when she gets bad with it. The specialist said to use that she will be lucky to see 40 and she is 33 at the moment. our youngest son is 8 at the moment and living with his mum and our other little boy who is 10. Our elder two at 13 and 14 have stayed with me after seeing the same attitude as i do all the time. In the past 6-8 months they have talked to there mum about how tired she is and how she struggles with things and it all ways ends up like world war 3 going off in the house between them and her and as a result of the attitude they dont even want to see her most of the time. I really wish she would wake up and realize that our children are more important that the friends at collage probably wont even remember her 10 years from now. I don’t know what clicked in her head that made her so vain but its not the Claire that i fell in love with. The one i love and fell in love with was mum and wife before anything and now everything else comes before mum and wife roll. sorry for ranting on a bit but i am at the point of just walking away and saying do it on your own then or just saying to hell with everything and just ending it all. The pain i feel every day does not get better and to see the person you love falling apart and making people that should not matter to them happy is destroying me as a person and as her husband.
Re: help advice please ! LGMD 2EHi its me again sounds like your in an impossible situation. I think you have to talk to her about how you feel and maybe try living apart but share custody of the children.Keep in touch with her but tell her why you think it would be best given the circumstances at the moment, if she cant make up her mind it isnt fair on YOU or all of the children. It isnt just her illness as there are others to think about especially the children.If she cant accept the help you are willing to give her then sounds like she will learn the hard way. TELL her you are there for her but not like this. I think you need to take a back seat and let her know she can come to you when shes ready and in the meantime try and not get so stressed over it all(easier said than done i know) but you will make yourself ill and stressed and depressed and you sound like you are the strong one and need to be there for the children to make their lifes as normal as you possibly can and explain to your children that mummy doesnt mean to get so stressed about her illness and to talk about all the good times you have had in the past, maybe they could write her a letter expressing how they feel about whats happening. I wish you all the best and hope you can both come to some agreement over this. Doctors cant know exactly how long md sufferers will live and it depends on the individual and she shouldnt dwell on it! Good luck and best wishes.
Re: help advice please ! LGMD 2EI have just been reading your messages and i want to thank you all for your words of advice and your kind understanding manner. She went out last night on the town with her sister and mum and just carried on as though she has a normal life. Stupid thing is that she will be bad for the best part of a week now after going round the pubs. I made a choice last night that she is on her own now and i am just washing my hands of her and making a new life for myself and my children, We all know what the illness will do to her and if she is lucky and finds someone new to take that on then good luck to them both. But from this moment on i am concentrating on me before i do something stupid myself. You was correct about making me ill and depressed and over the past couple of weeks i have looked at just ending it all on a couple of occasions and this is something i am not proud of as it selfish to end the pain for me only. Tried to talk to my eldest two this morning about the way there mum is at the moment and they have told me to forget her and move on(Just wish it was so easy to stop loving a person) but they are still saying that they fear for her in her own home with all the steps and all the extra work she now has to deal with and they still don’t want to know about the idea of them spending time with her at her house. My son who is 14 told me that he does not expect him mum to be alive by the end of the year and when i asked why he thinks this he answered saying, Dad mum is getting more and more tired when i see her and she keeps falling when her leg stops working for that split second and i think she is going to do it on the steps one day and then that’s the end for her. I asked him again what he meant by this and as he pointed out her steps are very steep and there is a radiator at the bottom. He believes that with a score of 2- on her neck she will break her neck if she falls. I took your advice and i have asked him to right a letter to his mum saying how concerned he his about her and i am hoping he will and she will take note of it but we will have to wait and see.
Thanks you for all your advice..
Andy
Re: help advice please ! LGMD 2EHi , im glad you have had a good think about your situation and that you have decided to move forward with your life. You are not being selfish at all and the love you have for your wife unconditionally proves this, you have tried to help her and include her in your life and look after her so you can be a family. Your wife cant cope or come to terms with her condition, which is a shame because she can do so much to help herself, like getting a wheelchair to use when she goes out, to save her energy, there is help out there but she is still in denial. I think you have done all you can for the moment. You sound like a fantastic dad and you are there for them. I wish you all the luck in the world and if you ever need to talk, then put a message on here. You take care and look after those children.
Re: help advice please ! LGMD 2EHi there!! It was very hard for me to read through your messages, and to all the responses you have already. In a way I can relate to what you are going through, but it’s slightly different.
My partner and I have been together for 10 years. He has been using a power wheelchair since well before I knew him. So by the time we started dating he had well and truly come to terms with his condition (he also has LGMD but his type is undetermined) as he was diagnosed at 8 and we started dating when he was mid 20s and already using a wheelchair.
He has also broken up with me a few times, citing such reasons as “I don’t see myself having a marriage and children” and “what would I have to contribute”.
At the end of the day I usually talk him around.. I love him and want to marry him and hopefully have children one day.. I don’t care that I have to do all the physical work in the relationship.. I love him for who he is, not what he is.
I don’t think doctors should ever give someone with MD a ‘timeframe’. Won’t listen to anyone who does.
I wish you all the best with your kids, and hopefully your wife will eventually come around and realize how she’s hurting herself and you.
Re: help advice please ! LGMD 2EHi, Its great to here that others go threw the same or similar problems. I have almost given in on making our relationship work now. After over 2 months apart and her blowing hot and cold i just can not take anymore and its now making me ill. One thing that keeps cropping up is how i should let her know i am there for her when and if she realizes she’s made a mistake. The only thing is how long should you put your life on hold for ? One of her problems with the illness is how she pretends it does not exist and does not even tell people about it including some friends. over the past few weeks i keep seeing a little hope for use both and then she just changes again and does not want to know in the space of seconds. As i am sure you can imagine this is messing my head up and our children’s head’s up. i am now at the point again of saying i have had enough of having the change of mind all the time and it still amazes me how she just does not talk to anyone about it including me and our children. I know what you are saying about telling people a time scale but if i am honest about it i took it as a wake up call as did our children and they want the same as me just to try and do things for mum so she is mobile longer and if we are honest its not just for her. I want our children to have happy memories of there mum and all the things they did with mum but over the past two months its just upset they are remembering i feel. I wish you all the best with your partner and hope that you do get married and have children.
Re: help advice please ! LGMD 2EI sure hope you guys are doing alright!! If my husband and I can help in any way get a hold of me. I have LGMD2E and my husband is very supportive and patient. I always fear for him or feel he deserves better but it is ridiculous to think that we are worthless just because our physical body is weakening. My heart and mind and love do not change and that is something I have to remind myself of. I am thankful to know God’s strength when I do not have my own. Very thankful for a strong husband who is patient with me. Praying for you both now. I just created an account when I saw this conversation but I am sure you could email. I would love to speak with her if she were ever open to it.
Also, there is a wonderful Limb Girdle page on facebook where we joke and ask questions and help each other whether with ideas or emotionally or just say, “I understand” and they really do. Maybe that would help her see how wonderful it is to accept support and love. <3
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