Viewing 20 posts - 1 through 20 (of 21 total)
  • #184893
    Mutual support!

    I have recently been diagnosed (after many years!) with myofibrillar myopathy and am interested in speaking to others with this condition to compare notes!
    Joan

    jwils773
    Participant
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    Joined: 23/01/2020
    #184906
    Reply To: Mutual support!

    Hello Joan and welcome. I am sure someone will be along soon to chat with.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184913
    Reply To: Mutual support!

    welcome to forum. Feel free to ask away and share. We might all not have the exact MD but we do face similar challenges.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #184932
    Reply To: Mutual support!

    Welcome along, Joan, my particular condition is Becker Muscular Dystrophy, I have no idea how similar that is to your condition! Glad to chat any time.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185104
    Reply To: Mutual support!

    Hi Ranald

    Thanks for replying. I don’t know much about Becker! My condition has been in my family for years but
    fortunately is a late onset type. I recently fell and had to have a half hip replacement so am currently
    a bit sore. Hopefully it’ll heal ok but who knows. I don’t walk too well, my hands can be difficult and various other boring things! I find the most tricky thing is trying to get advice or recommendations about my condition from medical
    people. Do you have the same problem?

    Joan

    jwils773
    Participant
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    Joined: 23/01/2020
    #185108
    Reply To: Mutual support!

    Well Joan, My condition can present itself later in life too, in my case when I was in my early 20s, although in hindsight, there were indicators from about 10 years of age.

    I too have some walking difficulties, and have only very recently started using a stick when I go outside, but have, unlike you, no difficulties with my hands other than they are weaker than should be.

    Sorry to hear about your damaged hip, that sounds like a pretty unpleasant sort of injury, and makes my recent head gash seem pretty mild (Said fall and bang on the head is why I’ve started using a stick).

    Apart from my annual neurology appointment, I too struggle to find any sort of understanding from other health professionals; in fact recently my attempts to get my toenails cut by the podiatrist at my local health centre. I have extreme difficulty getting into position to cut them, and end up racked with pain from muscle spasms.

    I just try to get on with things, getting out with my dog for a couple of hours a day is the only time I am out the house really, the rest of the time listening to the radio and on my laptop, washing clothes, cleaning, vacuuming; all very exciting!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185113
    Reply To: Mutual support!

    Ranald, “all very exciting”! I know that thought very well. Highlight of my day at the moment seems to be going to bed. I am taking antihistamines and they are making me so tired. Other than that I get out flying with my drone, but British weather being what it is, thats not very often.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185128
    Reply To: Mutual support!

    Hi

    Sorry about your recent fall. I wouldn’t describe a head gash as mild! I have calipers to try and stop
    me falling but I can actually walk better without them because they’re so heavy. Don’t suppose it’s safer
    though even with my stick.
    I understand your difficulty at the podiatrist but you sound to have more problem than me. I can
    usually manage. I am lucky to still have my car. It’s an automatic so I don’t need my worst affected
    leg, so at least I can get out of the house. Not that I go far but it is a little bit of freedom to be able
    to go for a coffee somewhere as long as there’s parking. It’s the little things that count!
    Joan

    jwils773
    Participant
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    Joined: 23/01/2020
    #185129
    Reply To: Mutual support!

    Just make sure you keep your drone away from my dog! Seriously though, have you to get a licence for it, or does it fall below the minimum weight?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185130
    Reply To: Mutual support!

    Well Joan, I asked again at my recent annual review about getting leg braces, but the neurologist just said it would make things harder. I can’t see that myself as it would surely stop my knees from giving way? I usually “sink down” on my bottom when I fall, kind of like an oversized toddler!

    I went out with the dog tonight without the stick, and it was actually easier; the damned thing just gets in the way when trying to carry a lead, torch, and pooh bag. As soon as I see the light of a bike or other walker, it Is a right struggle to get the dog back on his lead, carrying all that other stuff, and all with one hand! The demented bikers often just charge towards you, even though they must see my struggling to get my dog on the lead. (He will chase them otherwise)

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185138
    Reply To: Mutual support!

    I am a PfCO qualified drone pilot Ranald. It is something I can do sat down, but would prove to be a big problem if it anded a long way away. But you mention dogs. I am very concerned about keep the aircraft away from any animal, at least close in. I normally fly on our beach, but when the dog walkers arrive it is almost impossible as many of them have no control of their animals, often letting them chase my aircraft as it is landing, or walking across the well marked landing areas. Then of course there are horse riders, and that is a whole different story.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185938
    Reply To: Mutual support!

    Hi Ranald

    How you doing? No more head gashes I hope!

    jwils773
    Participant
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    Joined: 23/01/2020
    #185947
    Reply To: Mutual support!

    Thanks for asking, Joan, I am doing fine. I fell tonight whilst vacuuming but nothing broken! I scared the dog though, it was right beside his bed. How is your hip coming along btw?

    I am currently thinking about an e-trike instead of my car. I see so many cyclists whilst out with the dog, and really do miss being able to jump on my bike for an afternoon excursion, especially so as we come into spring!

    Do you drive, Joan? I do but am increasingly conscious of how ridiculous it is for us all to own a private car, however convenient it may be; there will always be an excuse why each of us drive, but pollution levels don’t care about our convenience, and sooner or later we will have to make difficult choices. (Can you tell I admire Miss Thunberg?)

    Talking about cars, my car hit a pigeon a couple of weeks ago, and is going into the garage for a new front grille. That an re-calibration of the radar brake support thingy. Nothing is ever simple with modern cars! I just feel so much money is swallowed up by running a car, added to what I said above, it is increasingly becoming a millstone around my neck. My daughters are grown up now, and I guess they can visit me by train, no doubt as long as I refund the ticket cost!

    I look forward to hearing your views on green issues, cars, and anything in between,

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185954
    Reply To: Mutual support!

    Hi ya Ranald

    Just chipping on the car thing. I have been without my car for over 2 weeks while a fault is being investigated. I’m going absolutely stir crazy now and it makes me realise how important my car is for me. It’s one of the only WAV adaptions that I can get in and travel comfortably without angering my already weak neck. There is a taxi I can hire locally for essentials but at around 30 quid a time I can’t afford it often and it’s not all that smooth a ride.

    I do have a conscience about emissions. It’s a diesel for one thing. Hoping that one day there will a similar eco-friendly adaptation available but for now, it enables me to have the contact with the outside world which helps me keep sane!!

    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
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    Joined: 05/03/2015
    #185964
    Reply To: Mutual support!

    I can understand your concerns Ranald. I too run a diesel WAV, and I feel almost ashamed each time I start the engine. A replacement vehicle that is electric will cost around £40k, well away from any resources I have. Where I live, buses are few and far between and are seriously expensive, well more than the cost of running a car over the same distance, but, and it is a big but, none will take my wheels as well myself even if I could get on one. Travel by train to our nearest town is similarly expensive and even more difficult, and again will not accommodate my wheels. I could not travel the 75 miles I have to go to get my physio by public transport as the cost would be very significant and the journey for me at least, impossible. The other alternatives like walking and cycling are, for obvious reasons, not an option for me.
    So what do I do to try and make a difference? Well I do not go out as much as I used to do. parking in our nearby towns is becoming increasingly restricted with Blue Badge bays being removed to make way for taxi ranks. On line ordering is becoming the norm. Medical advice is done by phone (appointments for those are getting even more rare now). I also drive more sensibly when i do drive. No hard acceleration, high speeds, use of gears etc all help me to achieve a mixed mpg of around 45 from my wav. I managed to achieve 60 mpg on my last 4×4 with the same principles.
    However, I would also make a suggestion here. A quick survey of the cars from Motorbility reveal the overwhelming majority are powered by diesel or petrol. Perhaps the government could set an example and help all those of us who have no alternative choice, get an electric vehicle and thus set a trend.There is still the problem of charging as I cannot get my vehicle off road unless I make substantial and thus extensive changes to my property. Like all my other adaptations I would have to fund them myself as I have too much money as a pensioner to get a grant. No easy way out methinks here.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
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    Joined: 02/11/2015
    #185974
    Reply To: Mutual support!

    Mike, I can’t remember whether I was reading on here or elsewhere, but I read that electric vehicles often aren’t strong enough to hold a powered chair. I’m not 100% on that, it might have been some other equipment that power chair users use, but I wonder if adapted vehicles might be the last hold-out for carbon-based fuels. That said, I do agree that that would be a great way to force electric onto the roads; by making them more accessible for adapted vehicles.

    JonoWhitehead JonoWhitehead
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    Joined: 05/09/2019
    #186007
    Reply To: Mutual support!

    The reality is that private motor vehicles are a luxury the planet just can’t afford – billions of internal combustion engines, electric vehicles, or whatever. That is of no comfort for those of us unable to get about without said private motor vehicle.

    These islands are crying out for cheap, reliable, and accessible rail and bus networks; not just for the lucky few million in and around London. Anything less just means governments are as incompetent as most of us believe them to be! (Clown show Johnson and Mr Cummings anyone?)

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #186014
    Reply To: Mutual support!

    I would agree wholeheartedly there, except “governments are incompetent??” surely not. :LOL:

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #186522
    Reply To: Mutual support!

    Hi Ranald

    I must say an e-trike sounds good but perhaps not in all weathers!
    I drive a small petrol car and have to say that changing to an electric
    model would not work for me because I can’t get the car up near the house
    to charge up. There are public charging points but not near enough for me to use.
    As far as buses are concerned I still need a car to get to them! Maybe living
    in a city would be easier but I don’t want to do that!
    How are you getting on social distancing? I do miss meeting up with people but
    mainly things go on as before!
    Sorry about your latest fall. Hope the dog’s got over it!

    Joan

    jwils773
    Participant
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    Joined: 23/01/2020
    #186588
    Reply To: Mutual support!

    HMG were on about (pre Corona virus) bringing the banning of the sale of new petrol and diesel cars forward from 2035 to 2032, a mere 12 years from now! Your charging point difficulties, Joan, will surely apply to millions of drivers and solutions will have to be found asap. Even new plug-in hybrids will be banned.

    As for the new, fangled social distancing thingy. I’ve been doing that for years! I keep hearing folk moaning about going stir crazy and the like on the radio, and I think “welcome to my world”.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
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