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  • #192861
    Reply To: Hi, I’m Craig with LGMD

    Hi Craig and welcome to Forum :welcome:

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

    Cat Cat
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    #192744
    Reply To: Becker MD Screening

    It is possibly a family history study to measure how the effects mentally socially, physically and genetically things are for the siblings and children of people with MD. It is only with progressing testing tech and thinking that wider pictures and patterns are seen. When I was tested it was said that carriers where not effected. But as Mike proves this is not the case. Both my mother and uncle are showing mild symptoms.

    It is possible only as adults can they measure the gene MD percentage rate or severity.

    Another option to explore and maybe this department that made contact can help with is PGD I think its called. where the eggs and sperm are checked for MD. It is a form of IVF.

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

    Cat Cat
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    #192703
    Reply To: Becker MD Screening

    I personally would want to take test if its being offered as NHS budgets are a fragile thing.

    My mother was told on my diagnosis at 9 that my siblings would be given genetic counselling and testing at 16 or on planning a family. My sister was denied testing they promised when she got married.

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

    Cat Cat
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    #192678
    Reply To: Becker MD Screening

    Hi Ranald

    I think it will be to determine in more detail the level of their carrier status with view to them being of age and having own children.

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

    Cat Cat
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    #192382
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    I find electric blanket and hot water bottles very useful for certain types of pain and cold weather. There is a danger though of heating up to fast and causing what we call in UK “Chill Blaine’s” its a red mottled pattern on legs hands or feet when someone with poor circulation heats up too fast or cant move themselves enough out a directed heat like a fire too close to legs, heat pad/blanket or electric blanket. This can cause pain that can last few hours or days.

    How’s his positioning in bed? Supporting with pillows could help take off points of strain. A air mattress could help also and would limit bed pressure sores. A hospital type bed could let him sleep in a more sitting up position to relive aches.

    I have some movement but still require to be physically turned and repositioned by family. You could maybe look at how often he’s turned and repositioned. When my leg pain is bad I have them massaged to encourage the even flow of circulation.

    I don’t know if it would be available in Albania but there is systems you can put under a foam mattress to aid turning. Some come with remotes for you to self turn as you require where others are a set turn every 15 mins. (vikta Komfi tilt or Toto turning systems)

    If its a electric shock type pain this is very common in muscle conditions and also could be a form of sciatic of his back. Better positioning, turns and massage might help. Also be sure he’s well hydrated during the day as the more dehydrated you are the more chance of the leg shocks and spasms will be. Diabetes is also common in DMD and causes peripheral neuropathy.

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

    Cat Cat
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    #192139
    Reply To: Which centre to move to

    Hi Molly

    Welcome to Forum. Im away up in Scotland but Im sure our Mod Sar will pop along and tell you about her clinic at the Brompton

    Good group to join on facebook is Pathfinders which is a MD group.

    cat x

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

    Cat Cat
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    #192038
    Reply To: Awaiting diagnosis

    sometimes the delay in the testing can be that they need to test in a way that takes time. Muscle biopsy can take longer than a blood test as they need to grow the tissue. Dye it. then map it in a translatable format.

    With your own inheritance and possibility of having more children’s you may want to ask your Neurologist to refer to a genetic councilor and if your carrier status can be confirmed. If you, your partner or both are carriers of the gene then it could give you a clearer picture on how to plan family.

    Initially it was thought that my MD was only peculiar to me. A anomaly in my DNA and not inherited.

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

    Cat Cat
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    #192037
    Reply To: So sorry me again!!!!

    HI pips

    Aspirating food, drinks or salvia is common over MDs. It can be due to our standard cough being weaker. Everyone can have food, drinks or saliva go down the wrong way but able bodied people without MD often have better cough power to effectively clear it.

    Your GP could maybe refer you to a speech and Language specialist (SALT) to have a look at your swallow technique and maybe Ear nose and throat. Always a chance issue is non md related.

    People with MD often have shorter pallets in mouth. Enlarged tonsils and bit less throat muscles power. Try taking slower smaller sips or bites. chew well and watch posture is good when eating and drinking. Try not sitting back or laying down to drink or laying down.

    I find milk increases saliva and causes choking episodes.

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

    Cat Cat
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    #191963
    Reply To: Possible benefits how will I survive

    Might be an idea to keep a food diary to see if anything is triggering the bad days. Caffeine can really tax muscles.

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

    Cat Cat
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    #191952
    Reply To: Out and About

    Being able to pop on and vent about everything and anything is one of the benefits of a forum like this. I was out a walk in a park today and a lady in 60s took a tumble. lots of young and middle age people around and no one but my brother and mother went to assist. I watched people actively turn around or cut off and go another way. It would have been hoped that with all thats gone on in 2020 that kindness might have stuck.

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

    Cat Cat
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    #191943
    Reply To: Possible benefits how will I survive

    Some councils have a money matters “better off” money checker to help you review what help your on now. what you can apply for under your current income and health situation. Citizens advice may also be able to do this.

    With you having 2 young children you may be eligible for help with childcare. After school care.

    Are you claiming PIP/DLA?
    Single persons Council tax (apply online via your council or by phone)
    Council Tax band reduction for disabled adapted home (this is worth asking for as it lowers a full band. If you have hand rails, wider doors or any adaptations in bathroom)
    Blue Badge (via your councils web page or gov.uk)
    Carers Allowance (if you have family member helping out they may be able to claim this)

    Google Carers center or Direct payment advice centers for your area. They will have a list of things that may help. Often a few discounts on services.

    I would seek employment advice on your rights even as a contractor. If you where to disclose you are disabled your employer would have hard time justifying at tribunal if they act unfairly. you might find they can make reasonable adjustments by maybe reducing your hours which would allow you to seek tax credits yo support lost hours. ACAS on Facebook respond quickly.

    Dont let having MD put you off applying for other jobs.

    https://www.disabilityjobsite.co.uk/

    https://www.evenbreak.co.uk/en

    https://www.scope.org.uk/advice-and-support/finding-jobs/

    Home

    https://www.gov.uk/looking-for-work-if-disabled

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

    Cat Cat
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    #191937
    Reply To: Out and About

    Sorry this happened to you Ranald and I hope your ok?

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

    Cat Cat
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    #191932
    Reply To: NewYear Greetings

    Wishing everyone a Happy Healthy 2021.

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

    Cat Cat
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    #191930
    Reply To: Exercise

    HI Pips.

    Yes they passively assist the rotations. The better bikes allow you to take over or rest while the machine works your legs.

    My home machine is from a company called Reviber and ordering direct I was able to get the Vat off due to it being for a disabled person.

    https://www.argos.co.uk/product/8633101

    The non electric ones tend to be heavy to peddle. or if light weight machines, where they may peddle easier they need someone to hold and stop it from moving away.

    My Reviber has speed options as well as forward and reverse peddle. More expensive machines like motomed can alter the resistance of the peddling to super light to a more intense workout. you can also use with power off

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

    Cat Cat
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    #191923
    Reply To: Exercise

    Passive and passive assisted physiotherapy videos

    Above is videos by Marina Di Marco, Principal Neuromuscular Physiotherapist in Glasgow demo straitening general stretching’s and advise for MD. Marina is the Neuro Physio for Scotland and has featured in a few videos for MDUk and supporting other muscle charities.

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

    Cat Cat
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    #191918
    Reply To: Exercise

    Breathing exercise, tera band stretches and some seated or standing balance board work are very good for protecting and maintaining muscle tone. All low impact.

    Many useful youtube videos added over lockdown. Yoga. Wheelchair exercise. Breathing and meditation.

    I bought a electric assisted exercise bike to carry on with my gym programme at home. Bike takes most of resistance out of peddling letting me work out harder if I can or work on passive rotations for joints.

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

    Cat Cat
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    #191841
    Reply To: Brother with DMD

    oops lol

    Advice very similar. Constipation is massive issue with anyone in wheelchair, reduced mobility and with MD. Again hydration important.

    Constipation is tricky to suggest any remedies as its very personal. And depends on what else your taking. Again any change to bowel habits needs your GPs input. I myself have slow gut motility due to my MD(slow food transit)

    Massaging tummy with orange oil can help encourage transit. You massage in circular movement from the right side under rib along in a straight line to the left then downwards. Probiotic drinks can help.

    GP may suggest stool softeners to aid movement. Or even refer to a dietician to see if anything in diet causing issue. I wouldnt buy any over counter items till you talk to GP.

    take care
    Cat

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

    Cat Cat
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    #191839
    Reply To: Brother with DMD

    Hi Sofija

    Welcome to both yourself and your Brother to Talkmd.

    Our first advice is always seek advice from your GP for any sudden change.

    This likely is a MD progression but us with MD do get other normal stuff too. I would first ask GP to test urine for infection as this is big factor in sudden loss of ability to hold urine. Important to see GP as could be few things that will need monitored. Prostrate. Diabetes, kidney stones blocking, retention or as above your average urine infection.

    From General MD point of view. It could be new inability to hold on. Or could also be that urine retention is a factor. This is when you don’t void completely then it sneaks up on you when your unaware creating urgency or incontinence. The bladder in effect gets overfull. this can be apparent if flow bit stop start like.

    Your GP will be able to refer to a continence care nurse in the meantime for practical help to access pads to keep dry and prevent issues with sores.

    I have been in this very situation myself and it is very tempting to reduce fluid intake but this can make it worse and make poorly in many other ways too. So hydration is very very important.

    take care

    Cat

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

    Cat Cat
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    #191373
    Reply To: Pet photos

    doggo on chair so looks like the ring leader lol

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

    Cat Cat
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    #191359
    Reply To: Pet photos

    Lovely and lots of fun

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

    Cat Cat
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