Viewing 11 posts - 1 through 11 (of 11 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
    Posts: 0
    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 (Mod) Cat (Mod)
    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
    Posts: 0
    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
    Posts: 0
    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
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