new member with limb girdle dystrophy

Viewing 17 posts - 1 through 17 (of 17 total)
  • #147117
    new member with limb girdle dystrophy

    Hi I have a limb girdle dystrophy and looking for a friend with similar condition. Would like to discuss toileting problems when out and other topics.

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147122
    Reply To: new member with limb girdle dystrophy

    Hello and welcome Janeh, to out forum. Whilst I personally cannot help you with your problem I am sure that there will be many on here who can.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #147130
    Reply To: new member with limb girdle dystrophy

    Hi I have a limb girdle dystrophy and looking for a friend with similar condition. Would like to discuss toileting problems when out and other topics.

    Hi Jane and welcome to the forum,

    I have a form of CMD rigid spine. I too experience wonky bladder issues when out and about. My bladder has been the bigest attack on my independance as I can no longer transfer indepenantly from public loos.. I am happy to chat

    Cat

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #147259
    Reply To: new member with limb girdle dystrophy

    Hi,

    I also have Limb Girdle MD. I know exactly how you feel as I am experiencing the same difficulties when out. It as if I have lost confidence in going out. Unfortunately disabled toilets can be too low for people with Limb Girdle MD as it progresses.

    I am very happy to talk further with you on this forum about this and other topics.

    I hope you find the forum helpful.
    :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #147308
    Reply To: new member with limb girdle dystrophy

    Hi Shevvy

    I am in an electric power chair when out which raises me to standing. I have to use a bottle standing up but if I need to sit on a toilet I cant. I have a raising toilet seat at home but no where else has these. It makes it difficult going to see friends also so I dont go out as much as I would like to.

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147309
    Reply To: new member with limb girdle dystrophy

    Hi Cat

    The bladder problems do really affect independence. Do you have to take someone with you every time you go out? I can not transfer on my own from a wheelchair and even with help the height difference between wheelchair and toilet can be tricky.

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147310
    Reply To: new member with limb girdle dystrophy

    Hi Mike

    Would like to talk about other topics too. I do not walk outside any more as I had too many nasty falls and use electric power chair with seat raiser when out. It enables me to stand to get out of the chair.

    Like your love saying!

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147354
    Reply To: new member with limb girdle dystrophy

    Hi Jane

    I too use a powerchair with riser. Yes I now need to take someone with me when out as I can no longer take steps etc. I manage at work with difficulty as my work toilet has a Mountway riser toilet. I have closomate and mountway at home also

    have you thought about trying a transfer board to get from toilet to chair.

    Other options for ladies which I am not ready to pursue is something called SPC supra pubic catheter. this is a system that involves a stoma from bladder thru skin to increase independence. Lots of people swear by this method.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #147358
    Reply To: new member with limb girdle dystrophy

    Hi Shevvy

    I am in an electric power chair when out which raises me to standing. I have to use a bottle standing up but if I need to sit on a toilet I cant. I have a raising toilet seat at home but no where else has these. It makes it difficult going to see friends also so I dont go out as much as I would like to.

    Jane

    Hi.
    I know exactly what you mean about meeting up with friends. Like you I don’t go out as much as I used to or would like to. I use a mobility scooter when out. I have a hoist in my car which I can operate at the moment to get the scooter in and out. I have limited mobility and cannot walk very far. I have to use two sticks when walking. I also now cannot manage stairs. I use a stairlift at home and also have one at work for just a few steps. Sit to stand is another challenge for me. I have to sit in chairs with arms. If I do go out I sit in my scooter.

    It can be quite isolating in that I don’t think my friends or work colleagues have any idea how difficult everyday tasks are and the impact the condition has upon me physically. It is good to have contact with someone like yourself who is going through exactly the same and completely understands.

    I look forward to hearing from you again.
    ;)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #147724
    Reply To: new member with limb girdle dystrophy

    Hi Shevvy

    It is good to talk to someone. It has taken me a long time to get round to joining the forum. At home I have a vertical rise chair that raises me to standing. I used to be able to get out of a scooter but cant anymore. My electric wheelchair raises so I can stand otherwise I would not have any independence. Unfortunately I had to lose my car as I could no longer get out of it. I have to rely on taxis for transport.

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147725
    Reply To: new member with limb girdle dystrophy

    Like you I do not know if I am ready for the catheter. It does not sound very pleasant and is probably more for people permanently in wheelchairs. I find my condition is an in between state, not being able to stand up from sitting but not in a wheelchair all the time either. This makes things quite difficult.

    I have used a transfer board to go from chair to toilet but the height difference can be a problem. Also I cant do that from my electric wheelchair so need to be in a manual one with a helper. It is quite difficult dealing with clothing and underwear.

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147750
    Reply To: new member with limb girdle dystrophy

    Hi Janeh.

    I also suffer with LGMD. I’m 54 now and also a new member to this forum.

    Interesting to read all the same problems that are being shared.

    Mark
    :new:

    "Stairs? Yes we have stairs, but there's only three" :-/

    Mark
    Participant
    Posts: 0
    Joined: 21/02/2017
    #147751
    Reply To: new member with limb girdle dystrophy

    Like you I do not know if I am ready for the catheter. It does not sound very pleasant and is probably more for people permanently in wheelchairs. I find my condition is an in between state, not being able to stand up from sitting but not in a wheelchair all the time either. This makes things quite difficult.

    I have used a transfer board to go from chair to toilet but the height difference can be a problem. Also I cant do that from my electric wheelchair so need to be in a manual one with a helper. It is quite difficult dealing with clothing and underwear.

    Jane

    A catheter is not something im ready for. But I have read lots of accounts of them working great for people. and they all say they wish they had done it sooner.. and while still walking. It was my bladder issues that made me start using scooter.

    If you want more information on catheters. I will see if some friends will post about them

    I use a power chair with a riser function to stand me up. And I have a mountway toilet riser and a closomat which makes it easier to sit to stand.

    You can also get walker frames that are balanced to aid standing

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #147942
    Reply To: new member with limb girdle dystrophy

    Hi Mike

    I am similar age to you at 60. Do you live on your own and how do you cope with everyday tasks? I still manage to cook for myself but do need carers to help with mornings and showering. I have been a bit isolated since having to give up my car a couple of years ago.

    Hope you are well

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147948
    Reply To: new member with limb girdle dystrophy

    I am fortunate inasmuch as my wife is a nurse and so can help me in the difficult times, like bathing and hair washing etc. I can no longer make a meal for myself, unless it comes in a Pot Noodle container.I have of course lost all my jobs now, but I felt it was imperative to keep interested in something as I found I was falling into the trap of feeling very sorry for myself becasue I can do nothing in terms of work. But I realised that there are a lot of things that can be done sitting down that do make a contribution to the world. So I am now training to be a drone pilot. Equally, I can udnerstand how much you feel isolated if you live on your own. I have seven children and co;ming up to nine grandchildren, so my problem is almost the opposite to yours. Are you involved with any voluntary group, social groups etc. Do oyu have any interests or hobbies that can keep you going. Please do not fall into the trap I almost did. Taking up an interest diverts your attention and also gives you new social contacts. Do pelase come back and perhaps tell us more about your situation. there are ways that can help.
    But I find the two biggest problems for me, as I guess many others, are pain and mobility. My biggest worry is that my DLA/PIP will be taken off me when the time comes. I am still able to drive although my range is now limited by the problems with my legs, and I suspect that my next car will need to be automatic. Do you have a mobility scooter? I see you have a power wheelchair, but personally I find a scooter gives me more mobility, especially with big wheels. I live in a village amd a wheelchair of whatever variety would not work for me. All of the pavements are covered in parked cars, with teh blessing of the police, so I have had to buy a road legal scooter to enable me to get out. A range of around 30 miles makes it really useful. Pension time coming up next year and that will be quite a mile stone for me.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #148554
    Reply To: new member with limb girdle dystrophy

    Hi Mike

    A drone pilot! Toys for boys and all that. Glad you found something to do. I have already fallen into the trap of not feelng very useful. Not sure what to do. Outings are very weather dependant in my local village. My powerchair works ok as the paths are quite good.

    Jane

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #148587
    Reply To: new member with limb girdle dystrophy

    Not a toy a that price, neither is the piots licence to fly one around £1400. But it will let me keep taking pictures for a while longer yet, so it is a good investment for me as I used to be a professional photogrpaher.
    I really am glad you can get out. As a I have seen with my dad (FHSD), once you are confined to your house the rot can reall set in. It is for that reason I have a number of interests that keep me stimulated, including flying the drone.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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