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  • #193776
    Reply To: Tight Wrists would like some help…

    Hi Mano

    Some Physio recommended hand stretches’ will help loosen wrist and maintain function. Thera band and excerise grip therapy balls are also helpful

    If your already in Further Education they may be able to refer you to a Occupational Therapist who can advise on working posture and even Assistive tech to make you more comfortable. Employers can also seek via Access To Work a assessment of your desk, seating and equipment. My employer provided a riser desk and gel wrist rests.

    Looking at your seated position at computer could be a start. Desk and chair need to be right or it has a knock on effect.

    Cordless number pads can reduce amount of arm reach and lift.
    Mice:- there is a big range of mice out there from standard, gel covered, tracker balls, track pads. Corded non corded.
    Keyboards:- some have more slop than others.
    Gel mouse pads and gel keyboard wrist wrests

    This company might be able to give you ideas on solutions to make working more comfortable. Few case study ideas on page below.
    https://www.specialeffect.org.uk/what-we-do

    Long term. Eye Gaze tech might be worth thinking about. This is where you can control a tablet with your eyes.

    Ive not used it but I believe Cortana (windows software) and Alexa (apple) can via voice commands help reduce some keystrokes.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193748
    Reply To: Muscle spasms

    Hi Ranald

    Yes your OT should be able to supply a wash/dry bidet toilet seat aid to your own toilet that should only take small amount of plumbing and electrics. When making case suggest to them that it will aid your ongoing independence without needing council toileting carer support.

    If its new spasms maybe ask GP to check bloods. I was having unusual spasm and it turns out me Folic, B12 and something else was not right. Its worth having it checked. Again if the back pain when coughing is new I would inform GP.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193713
    Reply To: Help…muscular issues, no help from gp

    HI and welcome to forum

    Your symptoms are common across the MDs, polymyalgia/polymyitis, Lupos and other neuroglial conditions.

    Testing blood for creatine kinase levels can be start to verifying muscle conditions. Formerly ask your GP to refer you to a Neurology consultant and Neuro/Respiratory consultant. Write to him formerly asking for the referral. If another consultant ordered your scan you could ask them to refer you also.

    If your Contrast Scan was same as a Ct Scan the IV solution could effect you differently than previous times. I took reaction on my last scan.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193352
    Reply To: Insurance

    thats good news on your vaccine

    I couldn’t get life insurance or employment insurance when I got a mortgage. When I travel my travel insurance is over £1000 single trip. Ive only managed abroad 4 times in my life :shock:

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193339
    Reply To: Staying active!

    Thats great your dads playing Powerchair Football. I Started playing couple years ago.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193338
    Reply To: Hello MD community!

    Passive assisted stretches help warm up muscle and maintain mobility in joints. Reduce tendon shrinkage. My family or carers do stretches with with my arms and legs every morning to help wake muscles up for the day.

    It could be his MD progressing or could be combination of aging, just coming out of a long winter plus the effects of covid restrictions making us less mobile and doing less normal social stuff. My health and mobility has really taken a series dip in this last year where I havent been able to access my normal routine of going to work, disability sports and activates.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193295
    Reply To: General Anaesthetic Worries

    Hope all goes wel and your home asap. Please do let us know how you get on.

    take care

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193287
    Reply To: General Anaesthetic Worries

    :welcome:

    My biggest operation was spinal fusion at 10 hours long.

    Have you talked to your Respiratory Team or Neurology about your pending operation?

    I have always been told to make surgeon and anesthetist aware of potential “malignant hyperthermia” during sedation. They can tailor the sedation. There is a test for it which I was negative for but I still make surgeon aware.

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

    Cat Cat
    Moderator
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    Joined: 20/09/2010
    #193252
    Reply To: Hello

    Hi Amy and welcome to forum

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193142
    Reply To: Oxford Astra Zenica Vaccine.

    Something for you and your MD or respiratory specialist to talk over. I too had a high temp within 24 hours of first vaccine but it quickly passed and was away morning after leaving just ache feeling on arm when touched for around a week.

    Although the first vaccine has a high effectiveness rate its the second that aids the longevity.

    Not really a right or wrong answer as its all personal choice and only a doctor can really weigh the risks on persons health etc.

    What you could maybe look into is asking medical peeps to help you prepare to manage the after symptoms. Not endorsing this but I took paracetamol few days leading up and after as I normally do for the flu jag to stabilize temp.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #193072
    Reply To: Hello MD community!

    HI and welcome to forum

    I gradually started using aids to walk. First just hiring when shopping or on holiday. Introduction of walking sticks on occasion Then having a powerchair in work. I started using a powerchair full time when I could no longer stand to get my scooter out standard car. Since getting a van I can drive direct from my wheelchair I quickly adapted to using the powerchair full time.

    The best advice is to be open minded when a aid or adaption could help. it could be extra grab bars around house, Handrails on outside steps or putting a ramp in. I avoided any intervention for far to long. I wish I had been able to adapt house more while I had more walking ability.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #192969
    Reply To: Ivf tips and advice

    Hi some useful past posts

    Preimplantation Genetic Diagnosis

    Shona Davison on BBC 3 tonight

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #192968
    Reply To: Living with Duchenne Muscular Dystrophy

    I have CMD SEPN1. welcome to forum :welcome:

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #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
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #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
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #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
    Moderator
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    Joined: 20/09/2010
    #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
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #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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    Posts: 1,002
    Joined: 20/09/2010
    #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
    Moderator
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    Joined: 20/09/2010
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