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  • #74131
    accepting the outcome

    Been wondering what the future holds and how I will cope with it.

    Been to Newcastle but still dont have a formal diagnosis but know I have an inherited form which is likely to progress over time. Up until now I wanted a crystal ball to see into the future but now think I certainly dont!

    I already think I am progressing but the docs just think I should accept my situation and get on with it… easier said than done. I have been filled with lots of anger and frustration and questions the medics cant or wont answer

    So my question is how does everyone else feel about the thought of progressing and the issues it will cause. Have you experienced it and were you supported during this process.

    Many thanks

    Posts: 267
    Joined: 17/08/2011
    Re: accepting the outcome

    @miracle77 wrote:

    but the docs just think I should accept my situation and get on with it… easier said than done.

    If I had the strength so many medicos would have had black eyes for that statement!

    @miracle77 wrote:

    So my question is how does everyone else feel about the thought of progressing and the issues it will cause. Have you experienced it and were you supported during this process.

    When I was first diagnosed, well no because I was pre-school age .. when I first began to realise I had this condition, the majority of the literature and focus was on DMD, a boy at my school had it and it scared the begeebus out of me. I wanted to stay away, not go to meetings and conferences because “I am not going to be like that” [ahh the folly of youth].

    It is okay to be scared, it is a process, a natural reaction, none of us like the unknown and unexpected.

    I have episodes of despondency and fear, going through one right now. It often manifests around christmas and the run up to new year … I have a natural default personality trait to head downwards, so when everyone else is talking of a new year, positive restart and plans they wish to make, I am thinking ‘okay what/who am I going to lose this year’. I tend to brave face around most people and have that one good friend I cannot hold back from.

    Maybe a psychotherapist would say it is how I maintain a control over my condition by controlling what I tell who and what I don’t and I can see the logic in that.

    So much of it comes down to the individuals own ways, I hold back, suppress, dissect and deal with each tidbit, where as my bestest blurts out everything immediately [regularly down the phone to me, we keep BT in profit :lol: ]

    I know my next set of changes are going to be big ones, probably involve permanent wheelchair living, PA’s, moving house etc … the nightmare of getting all those help organisations co-ordinated . I know to over worry about them now is futile, that much cannot be done, sorted or decided until the actual time it happens and until then I can moan and laugh, be silly and serious around here :D

    I'm always the animal, my body's the cage

    I blog about nothingness

    Posts: 4,751
    Joined: 05/03/2015
    Re: accepting the outcome

    I’m kind of the opposite. I tend to want to know everything humanly possible to figure out my next move. I’m always thinking about the future but I find not everyone else around me is prepared to. Practically, knowing what might be around the corner means I can get the ball rolling before hand – like applying for equipment, support etc which might take several months to organise or research to get the right thing.

    Mentally I can be prepared (although that’s a tough one). In an ideal world people (including the close family of someone) would get counselling or something but at the key stages (like stopping walking, being unable to breath or stand etc) I don’t thinks it’s a routine part of health care? Never has an MD specialist talked about getting help to mentally prepare for the future – just left to get on with it like you. Not helpful is it?

    I really think everyone with a progressive impairment should be able to talk through facing the future as an when needed… everyone is different so you might find that you want to learn about things as they come up or become relevant to you. Nothing wrong with that. Progressive impairments are scary and somewhat of an unknown – and that is the thing, you don’t want to spend more time worrying about what will go next to the point it stops you doing what you can do now. None of us know really I suppose – the when, how and in what way it will impact our lives – it’s all very different.

    Might sound a bit odd – but sometimes we have to write bucket lists every year – like things I want to do whilst I can still move x, y and z ! I’m really glad I did loads of things whilst I still could – because now I can still talk about them with people even if I can’t do them now which for me is important socially.

    Just my thoughts x

    Posts: 307
    Joined: 15/03/2011
    Re: accepting the outcome

    Though crassly put, you do need to get on with things. Saying that I spend a lot of time in denial finding a way around things – ok, I might not do things the ‘normal’ way or as fast as someone else but I do it myself. So that’s my way of coping – find another way be it with equipment or (as my physio often tells me) cheating and using different muscle groups. I cant honestly say that this is the best way to deal with the inevitable but it’s the only way I know how…

    Not really helpful advice is it? Maybe there isnt…

    What about second breakfast?


    Posts: 266
    Joined: 01/10/2010
    Re: accepting the outcome

    @miracle77 wrote:

    Been wondering what the future holds and how I will cope with it.
    So my question is how does everyone else feel about the thought of progressing and the issues it will cause. Have you experienced it and were you supported during this process.Many thanks

    Wow, straight ot the point from Gill.

    Maybe we do need to address and answer these questions.

    Three great posts for your from three of our finest explore several aspects of this. Scary and Despondent
    are two words that leap out at you and there is no getting away from the fact of progression. Things
    will get worse. Just mentioned on another thread, eighteen months ago the Neuromuscular Advisors sorted
    it all out so that I could sit and sleep comfortably, now they are back this week as the progression
    has defeated their best efforts.

    What also comes out is that you can plan ahead. The people I feel most sorry for are the ones who
    have a car accident and wake up paralysed for ever. The shock for them and their families must be
    just awful. At least we are being given advance notice and can firstly get our heads around it and
    spend a lot of time making all the right decisions. Technology is arriving at an amazing pace and will
    surely solve many problems before our progression takes us there. Companies like Apple are making
    quantum leaps and that will continue.

    My big one is how long I can remain at home and all the time I am preparing the battle lines for
    that one. At times I seem to be making progress on a daily basis.

    I like the bit about control. It is good to deal with things in your own way in your own time. Since
    meeting all our Talk MD peeps on the forum I do feel more in control.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    Posts: 4,630
    Joined: 27/09/2010
    Re: accepting the outcome

    @miracle77 wrote:

    So my question is how does everyone else feel about the thought of progressing and the issues it will cause…

    It’s a hugely difficult issue, and one that, to be honest, none of us really wants to face.

    Personally, I’ve tended to find over the years that when there are significant downturns in my condition, especially ones that affect function – I suddenly can’t do something that I used to be able to do – it’s easy to slip into depression. Though I’m not sure one ever escapes from that entirely, I’ve learnt gradually to spot the warning signs of that and to deal with it, managing it in a fashion.

    I’ve also come to realise that we’ve spent too many years just lurching from crisis to crisis, only dealing with problems after they’ve happened, rather than trying to look ahead and prevent them from becoming an emergency. So although it may not be a happy thing to do, there’s a lot to be said for trying to foresee what’s likely to happen, and to get the support mechanisms and, where necessary, the equipment in place to deal with the situation when it does arise. I think one makes better and more long-lasting decisions if one can manage to do that. It’s always difficult to make the right decision when you’re in the middle of a crisis, as you tend to look for the quickest and easiest way out then, rather than the best solution.

    And possibly the most useful people you may find are a good OT – and especially, if you’re able to make contact with one, an MD Care Advisor.

    And don’t be afraid to rant and complain! It does us all good. And there are people who understand.

    Posts: 564
    Joined: 24/01/2011
    Re: accepting the outcome

    a big thing for me is the financial longterm outcome. its expensive being disabled and at the minute I am able to cover social and physical wants and needs as I work.. but for how long. I reaken if my new back problem is a perm feature that I will be lucky to survive till the end of 2012 in the workplace and I dont make enough to live and save. ten yrs ago my master plan was to work till 40 but I really dont see it as possible and my retirment age when ijoined was 60 now its 68 so i doubt I will be around to actually draw it as I am sure the peeps in power will find a way to raise it to 98 to cover their own butts.

    Its also the feeling of helplessness with the anti social services, they make it harder than it should be to access services and help. I also find it difficult that help needed is not freely /happily given If you quailify via your personal physical needs. working or not or modest savings shouldny factor, with help in improving physical mobility and personal care items.. they should be aim to help us live..

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Posts: 1,002
    Joined: 20/09/2010
    Re: accepting the outcome

    If you’ve got any burning ambitions that you are still able to fulfill do them ASAP so you can look back and say “at least I did it”.
    I know it’s easier said than done but learn what your limitations are and adapt as necessary. If doing the housework wares you out rather than try to do it all at once spread it out. Little and often. When you have a bad day recognize it and adapt. Try to make things easier on yourself any which way you can. If you need help from friends or family ask for it. I’m sure they will help. In my experience people are backward in coming forward. They will, hopefully, help if asked but won’t offer. I get depressed if I get too stressed or tired, which if often, but I know that I then have to rest and/or have a good cry and I will be OK again. I try not to think too much about what I am missing but it is quite hard. It can be an emotional roller coaster and as someone has mentioned there is no physiological help. I would love some psychological help!!!!!!

    You can always get things off your chest here.

    Posts: 166
    Joined: 15/09/2010
    Re: accepting the outcome

    i have always been a positive thinker /doer …i set myself little mental challenges so to stay that way . I think of what the future holds and certain things get to me . The biggest one is , being a grandma in a few weeks time (im only 39 by the way haha) and not being able to cuddle the baby …still it gets me out of the night feeds . The most important thing to me i suppose and it might sound vain , but to keep myself as healthy and look after my appearance …hair and make up and a good sence of humour …and i always think to myself , there is always someone out there far worse off than you !

    Posts: 65
    Joined: 02/02/2011
    Re: accepting the outcome

    Wow! This is such a big topic, and it’s one that I have ideas about but personally have always found difficult. I think it’s an area that is totally neglected by many involved in our health and care. I also think that it is interesting to explore some of the common reactions that people have expressed – is this particular to MD or do people with other diagnoses react the same way?

    I’ll give you a bit of my story. I always hated walking and I walked “funny” but noone noticed (except me and my friends) until I was about 7. At 8 I had a lot of horrible tests and a muscle biopsy at GOSH and had a diagnosis of MD – possibly DMD manifesting carrier. The eperience gave me a deep hatred of doctors and a phobia of needles but I went back home and got on with life. I couldn’t understand what all the fuss was about. I was fine before the doctors got involved and I would be fine afterwards. Nothing was going to happen to me. I refused to talk to anyone about it and would not let the words muscular dystrophy be uttered in my presence. There may have been some psychological support offered at GOSH but if there was they didn’t try very hard. Every year I went to Newcastle and saw the very nice Dr Gardner Medwin, but I probably hated him too. My mum had a lot of support from Philippa Harpin, the MDG OT, but I really hated her, because she was the one who said I would end up in a wheelchair – and that I’d come round eventually when my friends started being able to do things I couldn’t. And this went on really right through secondary school and university. If there was something I couldn’t do I just didn’t do it. I wasn’t missing out by not playing sport – I didn’t like sport anyway.

    I started using a wheelchair when I was 14 and that was horrible. I remember the visit to Newcastle and Dr GM suggested I speak to a new research student in his team, Dr Bushby. She was really nice and listened to me while I cried and cried. I didn’t use the wheelchair very often, and it did mean that I could go shopping with my friends but I always left it outside the shop and walked most places, even if it was painful.

    I was a bit better when it came to going to university. I knew I would have to use a scooter. My mum had bought one when I was 16 but I’d refused to use it so it just sat outside the house for 2 years. In fact, in a new place with new people, it became a talking point and part of my identity. I gave it tiger print seat covers and called it the sex machine. I gave drunk friends lifts home from the pub and it was fun. But I wouldn’t in a million years use a powered wheelchair in case someone might think I was disabled!

    And so it went on – and it still does to a degree. My method for coping with change has always been to cross each bridge as I come to it. Don’t think about it, get on with life, and deal with it when I have to because it’s become a crisis. I don’t think that is always healthy though and I have also realised that my attitude as a child came from a deep rooted prejudice against disabled people in my own head. I would like to be more like criptic and be able to look at the future and plan. I’m starting to get there but I think that is very difficult if you are only ever surrounded by non-disabled people. My method worked up to a point: live your life and don’t worry about it until you have to. As long as you can cope with the fact that there may be very difficult crisis points with periods of depression as you get used to the new change.

    There is a very difficult balancing act with MD between function and support. For instance a pressure-relief mattress may help with pain but leave you unable to turn over in bed. The fact that I was so stubborn and continued to walk as long as I could meant that I stayed stronger for longer, but how much did I miss out on and how much did it damage me psychologically? How much better would life have been for me if I had gone to a PHAB club or on the disability adventure holiday my mum wanted me to go to? Or maybe even if I’d gone to the special school my mum fought hard to keep me out of?

    Things that have helped me with acceptance:
    – getting on with life – keeping busy
    – meeting other disabled people
    – being an expert in what’s out there to help you – even if you don’t want to use it
    – getting political about disability access
    – time – it took me about 2 years after I could no longer walk
    – various care advisers from the MDC – unfortunately no longer available in my area – make use of yours if you have one

    Get yourself to all the disability exhibitions and roadshows you can to open your eyes and your mind. Meet up with other disabled people and learn that being a wheelchair user isn’t the worst thing in the world that can happen. Neither is having other people help to get you dressed or to use the toilet (which the whole world seems to think is the most terrible thing ever) or to use a hoist. I still struggle. I do not want to use a hoist, or a powered wheelchair or drive a big van rather than my small car. I don’t know why – but I do know that it is not until I face my own prejudice that I can deal with it. This year I think I will try to seek some psychological support in order to help me through some of the changes I am facing. Like physiotherapy services it is terrible that this does not seem to be easily available and I will probably have to look to the private sector. I was desperate to talk to someone when I was a child but there was noone for me to talk to – or they were there but couldn’t get through to me.

    It’s interesting that tuangfox feels sorry for those who aquire their impairments suddenly – such as people with spinal injury. I have always felt the opposite. I will not say that someone who is tetraplegic as a result of an accident (and I know quite a few) has an easy life but there is a before and an after, and there is a concept of rehabilitation and well developed support services geared towards rebuilding a new life – both in statutory and voluntary sectors. Importantly in spinal units there are other people going through the same thing. People with progressive conditions must deal with constant loss and change and acceptance of increasing and different amounts of support. There is no one moment when you learn to live as a disabled person and accept the new life. There is no getting better, just learning how to live with it. But maybe the thing that we do have on our side, as tuangfox expresses, is time. Some of us may not notice the changes and we do have time to prepare if we are willing to. That scooter might have sat outside the house for 2 years, but at least it was there.

    By the way, I finally got a diagnosis of LGMD2a a few years ago, 30 years after my muscle biopsy, thanks to the
    work of Prof Bushby and her team. I wasn’t too bothered about having a definite diagnosis but perhaps it is helpful for me in learning to think about the future. I would say I agree with the doctors that it will be helpful to you if you can accept and learn to live with your new life but I would also ask them what support they can provide you to do that.

    It seems that this strong denial is a common feature of many people with MD. It is a well accepted stage in the “change curve” but I wonder if the fact that the progression is often slow and unnoticeable makes it a more difficult stage to work through than for other impairments. Do people whose MD is fast progressing accept changes more readily, because they have no choice?

    Sorry for this long and rambling post. Hope it has been helpful to miracle77, and food for thought for others, as your posts have all been for me.


    Posts: 33
    Joined: 29/01/2011
    Re: accepting the outcome

    hi ameena
    i found what you have written here most interesting . I was diagnosed with LGMD over 10yrs ago but only last year got the full diagnosis of LGMD2A last year . I was always lead to believe that this type was an adult form . I really feel most lucky as its only in the last year that i use a wheelchair full time and im 40 this month . Things have got increasingly difficult in the last 2 years , i suppose as my arms have got increasingly weaker . I have always been a very active person ie worked , mum and enjoyed a great social life . Now that im in a chair im still as active but its just different as having to drag my husband , who is my main carer around with me and i have given up work …not that i mind especially in the cold winter months haha . I have also just had to give up driving as i used hand controls but having to ask my husband to steer around roundabouts is not such a great idea …
    I think its so important to have a good support system around you , family , friends carers …people that can pick you up when you have a down day , not that i have them very often but when i do there is always someone to vent anger or frustrations too . My husband always says to me to take one day at a time …he is my rock ! My daughter who is now 18 has watched my deteriorate and is amazing …when i got diagnosed she was 8 . She has been with me when i have fallen in the street and people stare, laugh and point , they seem to think you are drunk . When people see an elderly person fall out in the public everyone automatically rush over to help , thats life i suppose .
    I get my new electric wheelchair in the next week or 2 and i am so excited as i will be able to get myself around by myself again , woo hoo ! so thats all good . I employ a pa through the ILA direct payments also which is great, gives my hubby a bit of respite .The best thing is being in touch with people with MD through this site or the one on facebook (LGMD beyond limits and limitations)i think thats what its called …great for people newly diagnosed as when we were , i was at a loss as to who to talk to who would understand what i was going through .

    anyhow take care


    Posts: 65
    Joined: 02/02/2011
    Re: accepting the outcome

    Well I was assuring people we do like long posts.

    Two more great long posts making lots of great points. Ameena now breaks
    Karl’s recent record.

    I hope people will read them at length and gain from the experience.

    I do so agree on the subject of local care advisors from the MDC and how much
    you can gain from them. Also how over the years you go through many “Medicos” and
    you end up an expert on so many aspects of what is out there even if it is not of
    direct use. Maybe Talk MD is now the place where we pass the “nuggetts” of information
    to other people who may badly need them.

    Ameena’s point about being a child with no access to disabled people I had never thought about. Maybe
    my mother did me a favour by dragging me to all those disabled clubs and then a generation later my
    mind did not have such a giant leap to make.

    What balancing acts we go through. On so many things do you struggle or “go with the flow” and
    are we ever sure if we aver make any right decisions. Looking back denial was the way to go till
    the meeting the MDC local care advisor. Two days later she was in my home, within a week there
    were Falls Prevention Service, O.T.’s and other experts turning up. Suddenly denial is not
    an option, it is really real.

    Rachel’s “one day at a time” is good and the only logical way to go. Why do I spend so much
    time worrying about years to come and worst possible outcomes of so called Benefit and Welfare

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    Posts: 4,630
    Joined: 27/09/2010
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