Viewing 15 posts - 1 through 15 (of 15 total)
  • #127405
    Hello… New to group

    :new: I don’t know where to start…I’m not entirely sure if anyone on here has the same condition as i 38. As the only people i know who has are my family members which are my mum, my daughter (Age 17) who has recently had it confirmed by a blood test by the genetics team, my uncle, maybe 5 of my cousins or more, my granddad also his sister and brother and maybe many more who are no longer with us or never met.
    we have what is called Distal Spinal Muscular Dystrophy which is affected by the GARS gene.
    The condition usually affects from teenager to mid 20’s, and it’s frustrating, reason being for example myself…it effected me in my mid 20’s started with weakness in my hands to which they were strong and had no problems with money, doing jeans up,making sandwich’s,open bottles, cans, jars, mainly the small fiddly items but they are worse in the winter months especially outside.. also i had what is normal walking like everyone else and my calf’s in my legs were calf’s but only in the last mmmm 1-2 years i have noticed a struggle in the way i walk and it doesn’t help when family members points it out and says oh you can see you have our disease and i have now become self conscious of how i walk…but i don’t walk as bad as my mum and her brother yet…to which i am dreading very much as i feel my left leg has weaken and i can see a slight waste in my calf muscle and it’s so difficult to find the right pair of shoes as i find really flat shoes will make my legs feel weaker than usual and my feet would slap like my mum and then i’m really self conscious, can’t wear a shoe to heavy, can’t wear heels, i found boots help me walk but can’t wear those in the summer.
    With our condition we tend to have the tendency to trip or fall over..and my mum has had several cut open knees and required stitches, to which touch wood i often trip but manage to keep my self up, but my poor mum has the worse of it hers started in her teens…her hands and fingers are always bent as there is no muscle to signal to them to keep straight and her legs the calf muscles and the knee muscle have wasted to which it doesn’t allow her to walk heel toe like normal people, she lifts her legs high to be able to pick her feet up of the ground then her feet slams down to make loud banging noise down on the ground to which then people stares which she finds upsetting.
    I’m just sooo afraid i’m going to turn out like my mum…mine started late compared to her but mild at the moment and it’s only just the beginning for my poor daughter…it’s started on her hands just very slightly and one of her legs…as she knows what to expect.
    My son didn’t want the blood test as he didn’t want to know… but now he is thinking about it he’s 14.
    Sorry to run on :roll: but it does worry me and i haven’t known anyone else to have this condition and how to they manage.

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #127649
    Reply To: Hello… New to group

    Have you had any contact with an occupational therapist, they might have some ideas on how to help with your walking and shoes.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #132569
    Reply To: Hello… New to group

    My consultant advised me against splints to support my legs as he said i will make my muscles waek, and need to try keep what i have there.

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #132581
    Reply To: Hello… New to group

    My consultant advised me against splints to support my legs as he said i will make my muscles waek, and need to try keep what i have there.

    sometimes a few steps between nothing and full leg splints. for me it was heal lifts in shoes and special arch supports to keep foot in good position for walking. then support on knee to stop it bending backwards. Im not sure about the splints causing weakness as in my mind if they let you walk farther for longer then you are maintaining control. I myself am going to ask about leg supports and lower back support to see if I can remain walking at least at home.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #132595
    Reply To: Hello… New to group

    I don’t think I have lost muscle strength in my legs from wearing KAFOs (full length callipers). I wore below the knee splints at night to keep my ankles at a good angle after surgery. I am not an expert however and I would seek advice from an MD specialist if you are unsure. It can be counterproductive to struggle on if you would benefit from splinting but all conditions are different even though they come under the Muscular Dystrophy banner.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #136505
    Reply To: Hello… New to group

    :ty: For your advice….it’s a self conscious thing, for the last couple of days i have tripped but saved myself thank goodness, but hurt my dam knee, think i pulled it as i staggered along…at the moment i will try to manage…and see how i go, as i think i mentioned my mum had splint’s but stop wearing them as you are limited to what trousers and shoes to wear, i do struggle walking around town though, i often wish i could be pushed in a wheel chair as my consultant said i could do that if i wanted if my legs get tired…but i don’t want to be giving in if i could help it….i often wonder if it’s all in my mind as my mum told me about the condition and i’ve had it confirmed but it makes me more aware of how i may be walking and people are looking at me, i often wonder if i could have that bit wiped from my memory would my weakness go and i would walk ok, :roll: i don’t know :bang:

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #136530
    Reply To: Hello… New to group

    :ty: For your advice….it’s a self conscious thing, for the last couple of days i have tripped but saved myself thank goodness, but hurt my dam knee, think i pulled it as i staggered along…at the moment i will try to manage…and see how i go, as i think i mentioned my mum had splint’s but stop wearing them as you are limited to what trousers and shoes to wear, i do struggle walking around town though, i often wish i could be pushed in a wheel chair as my consultant said i could do that if i wanted if my legs get tired…but i don’t want to be giving in if i could help it….i often wonder if it’s all in my mind as my mum told me about the condition and i’ve had it confirmed but it makes me more aware of how i may be walking and people are looking at me, i often wonder if i could have that bit wiped from my memory would my weakness go and i would walk ok, :roll: i don’t know :bang:

    it does limit shoes choice but I personally would opt for supported walking most days and fancy shoes no kafos for nights out in a chair. I have never been offered Kafos apart from wedges and heal lifts inside shoes, plan to ask neuro if they would help me help me walk at least in house again.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #136538
    Reply To: Hello… New to group

    Hi Tilly,
    Is there any chance you could get a power chair for when you go out?
    I know just how much it must bother you, thinking that people are looking at the way you walk, as I had the same problem for years. Sadly,I don’t think you can have your memory wiped and you must not think you have brought this on yourself because you haven’t. It’s a genetic mutation over which we have no control.
    Sybylla

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    #136601
    Reply To: Hello… New to group

    Hi,
    It has entered my mind to get one of those mobility scooters but i’m only 38 and look young for my age don’t want people taking the mick, as i haven’t walked my dog since the warm weather started to come in, as i were wearing my snow boots which gave me great support and confidence as it made my legs feel not so weak, but with the warm weather here i can’t be wearing my snow boot’s so my dog has missed out on lovely warm walks in the lovely sunshine and has put a lot of weight on, as he is now on steroids which doesn’t help with his weight.
    I will try to tell myself it’s a genetic mutation over which we have no control over, but it is hard. :oops:

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #136602
    Reply To: Hello… New to group

    Hi,
    It has entered my mind to get one of those mobility scooters but i’m only 38 and look young for my age don’t want people taking the mick, as i haven’t walked my dog since the warm weather started to come in, as i were wearing my snow boots which gave me great support and confidence as it made my legs feel not so weak, but with the warm weather here i can’t be wearing my snow boot’s so my dog has missed out on lovely warm walks in the lovely sunshine and has put a lot of weight on, as he is now on steroids which doesn’t help with his weight.
    I will try to tell myself it’s a genetic mutation over which we have no control over, but it is hard.

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #136603
    Reply To: Hello… New to group

    I got one of those scooters and it ervolutionised my life. i can enjoy going out again and not coming back exhausted and in great pain. I did not get it for walking the dog, but many people do. Look around and you can get a great second hand bargain. you will not regret it.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #136610
    Reply To: Hello… New to group

    Hi,
    It has entered my mind to get one of those mobility scooters but i’m only 38 and look young for my age don’t want people taking the mick, as i haven’t walked my dog since the warm weather started to come in, as i were wearing my snow boots which gave me great support and confidence as it made my legs feel not so weak, but with the warm weather here i can’t be wearing my snow boot’s so my dog has missed out on lovely warm walks in the lovely sunshine and has put a lot of weight on, as he is now on steroids which doesn’t help with his weight.
    I will try to tell myself it’s a genetic mutation over which we have no control over, but it is hard.

    I was scared, embarrassed. reluctant to start using scooter too. I first started in late 20s on a holiday so that I didnt spoil it for everyone. I quickly em-braised the idea. started renting the ones in malls and as soon as I could bought a boot scooter and hoist for car at my first possible car change.

    using a scooter is much better than missing out or tripping. I gained a new freedom in using scooter. In all honesty people dont stare, little kids are curious as they want a turn lol I had a few people ask in early days if I had MS.

    Go for it. rent one in a mall or seaside town and enjoy it. your dog will thank you for a fast walk.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #136870
    Reply To: Hello… New to group

    ooh you made me laugh on the last sentence about my dog will thank me for a fast pace walk, it put a smaile on my face.

    Tilly78
    Participant
    Posts: 0
    Joined: 17/04/2016
    #136933
    Reply To: Hello… New to group

    Just like Mike, the Mobility Scooter has changed my life
    For the better.

    I was amazed to find so many places that I had not visited
    in years. The progression comes on gradually so you do not
    fully realise the effect it is having on your life.

    Superb too just have freedom to instantly decide to go out
    and not come back completely shattered.

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

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #137675
    Reply To: Hello… New to group

    Hi, I have a type of Limb Girdle MD and have used a mobility scooter for the last three years as my ability to walk has decreased. I have a hoist in my car and have enough mobility to use it. It does make a difference to me and allows me to go out. I have other worries such as accessible public toilets. I would recommend getting a scooter or powered wheelchair. You will be able to be independent.

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
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