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  • #190284
    Reply To: Anyone out there with CACNA1S related myopathy?!

    HI Speller1 and welcome to forum

    There is some really good facebook groups for CMD conditions. There is a lot of parents of the various conditions from Uk, Europe and the US. You will also see first hand real time accounts of parents and their kids from birth upwards. Teens. adults with CMD conditions even if its not exact match to your family’s MD path.

    What I would say even people with my exact gene anomaly haven’t all tracked the same as myself. Some of us are ventilated. some from earlier than others while some have no vent need right into 60-70s. Same as with walking. There isn’t always a reason to why certain goals or milestones are met or when.

    Facebook groups
    Trailblasers (mduk group)

    Living with Md
    Cure CMD

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

    Cat Cat
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    #190194
    Reply To: Access to work

    If seeking charitable funding you could as MDUk joseph Patrick trust also.

    Like Mike says a second hand pre owned chair might let you get a feel for how it would benefit around your workplace. There is lots available and as Mike says often free.

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

    Cat Cat
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    #190178
    Reply To: Access to work

    hI Pips

    Thought I had replied but it seems to have vanished :scratch:

    Access to work unlikely to fund scooter as its a temp occasional aid in their eyes. I would explore the range of small indoor powerchairs. My first 2 work chairs was a Mambo mini then progressed to slightly bigger Invacare sure step with riser seat to help me stand. Riser seat function great at aiding a sit to stand.

    Im just restarting Access to Work Chair application which timed out during covid as I couldnt get quotes. But in January they didn’t dismiss or mention any new change regards electrical items. My work applied for a powered desk last year.

    I have to get 3 quotes. and be assessed by NHS wheelchair and seating services. NHS has to confirm my condition and my need. I then need a letter from them that confirms that NHS cannot supply all or part of the solution I need. IE they dont supply riser function or choice.

    Find a chair you feel comfortable in. Get quotes which will be easy enough as they are not special builds. As your OT or Physio to support the letter and then reengage with Access to Work. Be firm its a progressive illness and that a chair would help you protect yourself from covid as other wise you may need to use multiple surfaces for physical support which is touched by a school full of kids. You are a TA. in the even of a fire you need to be able to safe guard your own prompt exit while coordinating kids in your care.

    Both my chairs where about the same as small scooters. They are classed as indoor chairs which means mostly they cant do kerbs, normally distance under 3-4 miles which is more than enough for a working day. They will be ok in brief rain shower as long as you cover the controller which is the same in a scooter.

    IF its remaining in work. Investigate where it will securely be stored and charged over night. A smaller chair might be easier to store. there is also some folding travel powerchairs.

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

    Cat Cat
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    #190052
    Reply To: Sudden Deterioration

    Hi and Welcome to Forum

    I have CMD rigid spine. I have notice that my deterioration comes in 5-7 year blocks. can jog along with little change then have to make bigger adjustments to routine or aids. I have found that I dont recover from injury well. Like yourself I have wrist pain and hand release issues following a sprain that went untreated.

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

    Cat Cat
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    #189856
    Reply To: Taboo Subject Mental Health with Conditions

    HI and welcome to forum to you both.

    What stands out the most is that the depression increase around the enhanced decrees in mobility during and after pregnancy. Try reaching out to the charity below. Its is annoying how doctors link things constantly and solely to MD. It is often the case of depression but equally post partum depression is a chemical change. And the stance Gps taking isn’t helpful in your family moving forward

    This link is pandas foundation. you might be able to connect online or in person with groups who are going through the difficulty with mental health and parenting.

    Home page

    Have all her drugs been approved by her MD Neuro consultant. Some of these drugs can sometimes increase muscle loss as well as being helpful for nerve pain and depression. I would check that the combination isn’t clouding things. But don’t stop anything before they say so.

    What is current challenge right now with the physical aspect of MD?

    It is ok to gain acceptance at your own pace or not at all. Its your right to be angry. Its the moving forward and learning to create work arounds which we all do as time goes on that counts and by moving forward time creates peace.

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

    Cat Cat
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    #189626
    Reply To: Sen school lack back to school help?

    Hi And welcome to Forum,

    Very much in the same boat as yourself. The Scottish guidelines are work from home if you can, which I can for now. There does not seem to be any clear guidance on schooling for the sheltered group.

    Maybe someone on Facebook groups Trailblasers or neuromuscular alliance will have educational years guidance.

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

    Cat Cat
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    #189625
    Reply To: Bionic knee braces

    The do look great Joel. We have keenly watched this tech for years on forum. Would be great to maintain walking ability.

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

    Cat Cat
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    #189624
    Reply To: MD and Diabetes

    I know its common in Duchene. The only men I know with MD who inject insulin are those with childhood type 1. Where they have never produced it themselves.

    I would be cautious of stopping treatment before seeing nurse. In meantime can you look at diet. Both people I know with both type 1 and 2 have to juggle diet and meds to keep level. It could be something in your diet is playing havoc in tandem with new meds.

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

    Cat Cat
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    #189242
    Reply To: Hi

    That is good news.

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

    Cat Cat
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    #189220
    Reply To: Hi

    As Mike says its a good idea to get siblings tested if you can so they can make informed choices later in life.

    Inheritance can often depend on type and if carried in male or female line. then there’s carrier status and spontaneous mutations. that means that the condition is a fluke in the affected person. In the 80s my condition was perceived to be just peculiar to me. But now 30 years on a sibling and 2 older relatives are showing very mild issues which would maybe indicate that them themselves are maybe carriers.

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

    Cat Cat
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    #189219
    Reply To: I’m scared

    Hi Tara,

    I’m not a parent but am using my vent almost full time due to my gastro intestinal complications which cause extreme fatigue and breathlessness. In the not to distant future it is likely that I will need to transition to PEG feeding.

    Don’t know if you’ve heard of this group Pathfinders neuro muscular Alliance (formerly DMD pathfinders) You might be able to connect with other parents via them. https://dmdpathfinders.org.uk/dmd-pathfinders-is-changing/ also on facebook

    Sorry I cant add much but sending massive hugs.

    Cat

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

    Cat Cat
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    #189180
    Reply To: When To Start Using a Wheelchair

    Its often a fine line of keeping going to maintain ability and walk for as long as possible and not overdoing it. Not sure there is a correct answer.

    Have you thought about a walker with a built in seat to give you support. carry stuff and be a handy seat for when you just need to sit down?

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

    Cat Cat
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    #189085
    Reply To: Hi

    HI Will and welcome to the Forum

    :welcome:

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

    Cat Cat
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    #189063
    Reply To: Hello

    :welcome:

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

    Cat Cat
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    #189062
    Reply To: Face Mask Exemption

    All gov and charity’s supporting disability highlight people should not receive abuse or discrimination for not wearing and are not obliged to offer a medical explanation or evidence for not wearing mask out with a medical establishment as long as covid free.

    keeping it simple in most causes does pacify a store security guard or clerk. A simple “I have high blood pressure” “I cant put it on” or “Lung condition” is enough to move on.

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

    Cat Cat
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    #189058
    Reply To: Face Mask Exemption

    Generally speaking wearing some form of face covering is the safest option for you and others. Some masks easier to use than others and there is also a face shield or visor that can be bought cheaply on ebay from UK 3d printing people.

    You can also buy a card similar to the “just cant wait” card for hidden disabilities for using disabled toilets. There is various designs, wording and prices from free plus. below is the idea

    https://shop.disabilityhorizons.com/products/ppe/mask-exemption-travel-card-lanyard-or-clip-badge/

    I struggle in mask so have to both limit and time outings to places that require. I’ve had to visit hospital once or twice during all this and although exempt no way would I risk it. I will carry on with online shopping as much as possible.

    I had to visit a Apple store for a phone repair. I wore in mall. in line and right up till being served. My voice wouldn’t carry over mask and I was struggling. The clerk didn’t push issue once I said I had low long capacity.

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

    Cat Cat
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    #189055
    Reply To: Face Mask Exemption

    English guidelines (end of part 3)

    https://www.gov.uk/government/publications/face-coverings-when-to-wear-one-and-how-to-make-your-own/face-coverings-when-to-wear-one-and-how-to-make-your-own

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

    Cat Cat
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