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Viewing 20 posts - 1 through 20 (of 24 total)
  • #164247
    Reply To: Mitochondria disease

    Hi there, one of my friends has mitochondrial disease. She founded the Leigh Network which you might find helpful if you are in the UK. Here are the details

    http://www.newcastle-mitochondria.com/wp-content/uploads/2017/02/Leigh-Network-information-leaflet.pdf

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #164246
    Reply To: New to the whole MD thing.

    Hi Julie,

    I have a form of DMD and I too have scapular winging although I’m not sure how severe it is relative to you. I sometimes get pain in my upper back between my shoulder blades and find it helps to lie on a flat surface and have someone press my shoulders back gently. I also get bruised if I sit on hard back chairs because my shoulder blades and spine are so prominent and they are getting pressed against the hard surface.

    I too have struggled with my weight. I’m now at a weight which I’m happy with and I’m managing to keep it stable. I think it is important to identify why you are having problems in this area and then that may help with a solution. For me it started with severe loss of appetite which was caused by a very low period in my life which was contributed to by lots of different things but my respiratory muscle weakness had progessed and I needed night ventilation and that was a big jigsaw piece. For me in general if I feel stressed or down I really lose my appetite and just eat less – the weight falls off and while it’s easy to see why it’s harder to make it stop!! It took a good while but I got the weight back by just making sure I was eating the highest calorie/protein versions of things eg swapping my milk to full cream, swapping my yoghurts to full fat, lashing in the butter when making scrambled eggs, using sauces on things eg I love full fat tzatziki with salmon, cheese sauce on veg etc etc snacks can be helpful too though I wasn’t very disciplined about having them myself. More recently my appetite has been fine but I have begun to experience difficulties with swallowing safely. This makes eating tiring and means I need to eat carefully. It has taken me a while to figure out what kinds of foods I can and can’t manage easily but now I’m on an even keel and can pretty consistently eat regular meals of sufficient quantity to keep my weight where I want it which is great. There are always strategies though. There are the supplement drinks if needed and even top up with a feeding tube. I was considering that quite seriously but feel happy where I am at the moment so it’s on the back burner but I do find it good to know that for every problem there is always some kind of workaround – at least that has been my experience.

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #150689
    Reply To: What was the last good film you watched?

    Have just watched Inception which has a stellar cast but imo is ridiculous. Watched the Hunger Games earlier this week and wouldn’t rave about it but did think it was good, having watched it I’ll record the others whenever they’re on. There’s some good stuff on TV these days, I’ve been enjoying Fargo though the latest episode has gone a bit overboard with the’out-thereness’.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #150656
    Reply To: Neurology annual review

    So I had my neurology annual review yesterday and came away feeling rather rude but I have basically told the unfortunate doc that I find this annual event to be unhelpful as all they do is rub my nose in my disability which isn’t very emotionally fun and achieves nothing as there is nothing they can do. I just wondered if others feel the same and also whether there is anyone who has stopped bothering with annual reviews? I am not trying to say that regular review with a neurologist is no use but I do wonder if there are better ways it could be done, whether it could be less often (appointment systems don’t seem able to cope with appointments less frequent than annual but surely if there was enough demand this might be possible) or be in some way more responsive to what people need when they need it. Personally I am on ventilation so see a respiratory team and I am also in the highly priviliged position of having access to regular physio via the neuromuscular centre in Winsford so the neurologist adds little. I must make clear that I am enormously grateful for all the excellent care I have received via the NHS and also the NMC but I would be interested in others’ thoughts.

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #150655
    Reply To: Struggling to accept I have LGMD

    Hi Allycatz,

    Sorry to hear of your struggles. I’m not sure that I have any specific way of coping that I can share but here are some thoughts. Developing an interest or hobby that works for you physically can be a good way to get to know new friends. Since retiring I have been trying to read more and have joined a facebook book club which I enjoy. Social media can work both ways but some well chosen blogs/forums/virtual clubs or groups can be helpful. I think it can be helpful to create easy ways for friends to connect, it can be easy for friends to drift away without intending to and I suspect that when I was more able bodied and life was busy with work and other commitments I may have let friendships fall away where I shouldn’t have done. I have found that sometimes just connecting with someone you haven’t seen for a while with a concrete suggestion of something to do together can reignite a friendship. That mightn’t be helpful for you but I thought I’d put it out there. I have found keeping a prayer journal helpful at times which has basically involved splurging all my deepest hurts, feers and angst to God in writing.

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #145804
    Reply To: 10 yr old daughter manifesting Carrier

    Hi Gaynor, only just come across this. I am a manifesting carrier of DMD and was diagnosed age 11. I am happy to be of any help I can be.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #144669
    Reply To: Food preparation advice needed

    I use tubs – mainly recycled take away ones!! I like the Australian Womens Weekly cook books and their Stews and Casseroles one is full of readily freezable meals. Foil tubs or silicone bakeware can be useful to cook things like lasagne, fish pie, moussaka, pasta bake which can then be frozen in the container they were cooked in.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #89384
    Re: wheelchairs and physical activity for DMD

    Sorry, I’m not from the MDC team so probably shouldn’t have answered on this thread… Ailsa

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #89383
    Re: wheelchairs and physical activity for DMD

    Hmmm, some musings follow based on my experience as a manifesting carrier of DMD rather than as a parent of someone with DMD or an OT/physio. Well if your son is only using the chair when his legs tire then presumably he’s fairly tired in general at the time. Does this OT have much experience with DMD? I would have thought that a wheelchair should be a tool to make it easier to get around rather than a fitness challenge. I would think that if he’s able to push himself then doing so may help him to maintain that fitness but if it’s difficult for him then working hard to push himself is likely to have limited effectiveness in making him better at it but like you say seems likely to make him frustrated or discouraged if he feels he isn’t achieving. I personally haven’t found OTs I’ve seen have had much idea about MD but then my condition is more rare and it wouldn’t be fair to tar them all with the same brush! I haven’t seen all that many of them.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #86024
    Re: Learn how To Fall…………….and/or Curtains….

    Unfortunately since my neck muscles gave up most of the ghost I can fall as gently as I like – my head still flies off and bounces and I end up in A+E…. ho hum!

    My falling funny story is that I had a fall earlier this year and badly injured my knee so ++ pain, 6 weeks off work – the works (ok that bit isn’t very funny!). A month or so later I had another fall which was very mild but due to the bouncing head looked very bad to everyone else – immediately afterwards I was lying on the ground with a bleeding head exclaiming happily “my knee is fine!”

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85900
    Re: Shower Seat Debacle

    Oh don’t get me started on OTs!!! Thinking outside the box just isn’t in the job description!!
    I got a private OT to advise me when I moved to my bungalow from the flat I’d been in before – won’t be doing that again!!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85479
    Re: Night ventilation

    Hmmm sorry, was a lot older than 4 when I started! I would say though that it does take some persistence to get used to it so be prepared for a tired little boy initially, he will get used to it though. I can’t sleep without mine now! It feels really strange the first time you turn on the machine with the mask on – it’s a bit like when you are in a really strong wind and it makes you want to hold your breath or turn your face away instead of breathing with it which is what you’re meant to do. Getting over that initial strangeness actually doesn’t take very long at all though it’s the getting used to sleeping with it on that takes a bit longer.

    Regarding humidifiers – they started me without one and then added one when I wasn’t managing to sleep very well and it made a huge difference. On these boards and other people I know through my Mum all say how much better it is with a humidifier so I think I’d push to have one from the start. It’s another piece of kit so I don’t take it away with me – once I got used to the vent I was able to reduce the setting on the humidifier and then do without it completely if needed.

    Maybe it would help to think of a name for it together? I call mine my heavy breathing friend – possibly not so appropriate for a 4 year old!!!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85516
    Re: Your thoughts for the next Target MD

    I’ve done bits and pieces over the years – I help out in a shop (not exactly a charity shop but kind of along those lines) once a fortnight and I’ve helped out with young people and international students through church. I am in the fortunate position of being able to work almost full time so my volunteering has always been a weekend and evening ‘extra’. Through volunteering I’ve met some great people and I’ve had the privilege of being a little part of something that makes a real difference to people’s lives – I think it’s a general rule of these things that you get out more than you put in – it’s what we were designed for if you will.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85354
    Re: Muscular Dystrophy and BMI

    BMI is a means of assessing whether someone’s weight falls within normal limits for their height

    BMI = weight in kg / (height in m) squared

    If someone has an abnormally high or low level of muscle for their height then this will affect the result so very muscled athletes such as rugby players will be abnormally heavy for their height and a lot of people with md have an abnormally low level of muscle and so will be abnormally light for their height. I suspect that if people are unexpectedly coming out as obese there is likely to be a problem with the height bit of the equation – scoliosis, lumbar lordosis and difficulty holding the head upright will all result in a lower height measurement than you’d get if you didn’t have those issues. You might be better using a surrogate measurement for height such as ulnar length (ie measuring from you wrist to elbow and doing a standard conversion to estimate height from that)

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85326
    Re: Beckers MD

    Hi there,

    I am a manifesting carrier of DMD which is closely related to Becker as it is the same protein which is affected.

    I am unaware that BMD affects eyesight – certainly my own eyesight is excellent and I have known boys/men in the later stages of DMD who had no problems with eyesight.

    There is no specific recommended diet. It is helpful to aim to achieve and maintain a healthy weight as being overweight just gives your muscles unnecessary weight to have to shift around and being undernourished or losing weight too quickly can affect your muscle strength.

    I see no reason why BMD would prevent you giving blood if you are otherwise eligible.

    Hope this helps!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85146
    Re: physiotherapy

    I get regular physio at the most wonderful place in the world (they pay me in biscuits to say that :D ) – if you live anywhere near Cheshire I’d highly recommend you look into it – you can get referred by a GP or your neuro if memory serves…

    http://www.nmcentre.com/

    It has been unique in the country but I think there is a new one opening in the Midlands if that’s any closer.

    Ailsa

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85160
    Re: temporary wheelchair.

    If you or someone you know is a member of Freegle / Freecycle could be worth putting out a request for one on that. It can be surprising what turns up on e-bay reasonably priced from time to time – I got a powered bed lift thingy that I needed to get me over a temporary blip after I did my knee in – it proved to me that that wasn’t the brand I’d have gone for if I was making a considered purchase and spending more but it did the job and I was very grateful!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #84897
    Re: Standing from chairs

    Hmm an interesting technique indeed – must give it a try!

    They aren’t cheap but Rainbow Mobility sell office chairs that can height adjust up and down kind of like standard office chairs but you don’t have to get up out of them for them to adjust up – it’s an electically powered up and down. From what I can see there are two brands, the Euroflex and the Hepro – the Euroflex one is a lot cheaper and it isn’t entirely clear it ‘up and down’s but if you go to the manufacturer’s website (Eurovema) there is a picture of a lady in one which has clearly ‘upped’ but she seems to have an extra control on it compared to the one on the Rainbow Mobility website so maybe it’s an optional extra and maybe brings the price up, worth checking out though….

    Anyone else had the experience of going to a meeting or similar, finding and adjusting an office chair to your safe ‘I will be able to get up myself now’ height only for it to plummet as soon as you surrender your backside to its tender mercies so you are eye level with the desk and stuck there until a kind colleague rescues you???

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #84809
    Re: Sorry, long, confused post!

    Hi there,

    I’m an adult but I thought you might find my experience helpful. I use a powered wheelchair at work but only occasionally – I use it about once a fortnight if I am particulary tired or have to do some extra walking. A manual chair is not useful because my arms are actually weaker than my legs. It is something I have only recently acquired but it has been great because it has made it possible for me to get around work without completely knackering myself not to put too fine a point on it!! Yes, it might seem kind of weird to people who don’t understand to see someone go somewhere in a powered wheelchair and then get up and walk but I have found that if I behave like it is the most normal thing in the world people react to me and not my chair. I did wonder whether patients would be distracted by the chair (I’m a health professional myself) and whether I would either not get taken seriously or constantly spend time fielding questions about me rather than doing my job but it has not turned out like that at all. It is generally even easier with other staff because when you see people regularly you get used to each other and the staff I’ve worked with for a while all have a fair idea what I can and can’t do. Similarly I would hope that your son will get to a point where his classmates ‘get it’ and understand that sometimes he uses a chair and sometimes he doesn’t – two points I thought of –

    1) I’d say a scooter isn’t a good idea – I had the same thoughts as you about a scooter being less ‘disabled looking’ when I first thought about getting a mobility aid for myself but when I tried a scooter in the shop I nearly crashed it because I wasn’t expecting to need so much arm strength to steer it!! Your son may not find them easy to use. Also Vicki is right about the size of them – you can get much neater powered chairs.

    2) Re transporting the chair – have you thought of leaving it in school? My chair stays in work and doesn’t come home. You would need to discuss it with the school but perhaps there is some locked room or keycode protected room you could have it kept in. Perhaps there is an administrator’s office it could live in?? It would need to be a room with a power source for charging the battery.

    Hope this helps a bit with your thoughts….

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #84347
    Re: Wheelie Bins

    Hope you had some joy. I have the same issue – I too use carrier bags – helps avoid the bag getting too heavy. My hot tip is to save the plastic bags that fruit and veg, bread, bagels etc come in to put icky stuff in before putting it in the carrier bag bin – stops ick getting out through the holes in the carrier bag – super scrimpers eat your hearts out!!!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
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