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Frightened about things getting worse

crackercracker Member Posts: 324 Pioneering
edited September 2018 in Disabled people
I've talked before about not having any rotator cuffs left, bone eroding there and in thumbs.
I went to take a shower today and could not get my b louse off because of the pain in my shoulder. (Pardon the italics -  have no idea where they came from  I tried again later, being very careful. It took a long time, but  was able to get it off and shower.

They are getting worse. I cannot imagine what I will do if I lose the ability to dress and undress myself and the ability to use my hands because of the thumbs.

Thank you for listening. I am quite down.

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Im sorry to hear you are struggling @cracker it sounds very difficult :(
    Scope
    Senior online community officer
  • susielockettsusielockett Member Posts: 53 Courageous
    Good afternoon cracker, I am sorry you feel so down over all this you are going through. Remember its all about what you CAN do and not what you CANT do. I have found Scope to be a brilliant site and there is always someone here on line you can at least talk to even if its only to moan :) 
    susielockett
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @cracker, I am really sorry to hear this- it must be very frustrating! I too struggle with buttons because of reduced movement in my arms and hands. This may not work for you, but have you tried a button hook? They can be bought online :)
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  • crackercracker Member Posts: 324 Pioneering
    I never even thought of thatI I will check it out right away.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Please let us know what you think @cracker :) Hope you find it useful!
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  • crackercracker Member Posts: 324 Pioneering
    Thank you, I will let you know. I also have difficulty pulled my pants up, since my left shoulder cannot pull anything without considerable pain. I can pull only with my left hand, This takes some maneuvering, and dressing can take me a long while. I wonder if there is an assistive device for that?
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @Jean_Scope, @cracker is based in the USA but I wonder if there are any other assistive devices you know of that could be helpful for them?
  • susielockettsusielockett Member Posts: 53 Courageous
    There all sorts of equipment to be had, some you would not think of. I used to work for a disability charity and they had a store and showroom. If anyone wanted to know what equipment is available go to www.disabilitypartnership.org.uk and have a look.

    susielockett
  • DenzDenz Member Posts: 4 Listener
    Hello @cracker,
    I am sorry you are struggling, I definitely understand & can relate to how you feel.
    You must talk, here is a good platform, no-one will judge & nearly everyone will empathise. You can really find help here. People read what you're going through & even just saying "hello" to you can help you feel not so alone (even if we are ALL over the world).
    You are not alone.
    Someone on this forum will always chat.
    Good luck & best wishes.
    Love & Light.
  • Ami2301Ami2301 Community champion Posts: 7,142 Disability Gamechanger
    Hi @cracker
    Have you tried braces that clip onto your trousers and then you can use your stronger arm to pull the straps up?
    Community Champion
    Disability Gamechanger - 2019
  • crackercracker Member Posts: 324 Pioneering
    Thank you, Denz. Your words are comforting.

    Am - I have sweatpants mostly with elastic waistbands. I do have a couple of other pants, though, and yours is a good idea. THank you!
  • crackercracker Member Posts: 324 Pioneering
    susie, I have copied the link and will take a look at it. Thank you.
  • susielockettsusielockett Member Posts: 53 Courageous
    Your'e welcome cracker, they are local to me here in Warrington but there will be places all over that you can buy them
  • Ami2301Ami2301 Community champion Posts: 7,142 Disability Gamechanger
    You're very welcome @cracker!
    I know it's scary at first when you lose the ability to do the things you used to be able to do but we can reassure you that there are ways to be able to do them again :)
    Community Champion
    Disability Gamechanger - 2019
  • crackercracker Member Posts: 324 Pioneering
    I am at the beginning of that progress, I think. I I cannot reach or pick up something with my left hand and arm but need two hands, I lift the left arm with the right  and place it where it can just stabilize a thing. I can then lift with my right hand.

    I have also learned to use my feet and legs, which are a lot stronger the hands.

    I was just talking to myself in the shower. I told myself that part of my problem is  my internal fight to be without disability instead of learning to work with it. Your words helped me focus on building strength instead of wanting to regain that which cannot be regained.

    All these responses are wonderful. I cannot thank everyone enough.
  • Ami2301Ami2301 Community champion Posts: 7,142 Disability Gamechanger
    That's fantastic to hear! :)
    In regards to reaching objects, there is an aid which looks exactly like the ones that street cleaners use to pick up litter. I call them the 'Grab Stick' lol but I'm sure there is a correct name for them. You can buy them online and they vary in lengths too! :)
    Community Champion
    Disability Gamechanger - 2019
  • crackercracker Member Posts: 324 Pioneering
    Thanks - I do have a grabber. IT is a cheap one, though, made of flimsy plastic. I will look online for  a sturdier one.
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    Hi @cracker

    Thanks for @Pippa_Scope for inviting me to join this conversation. 

    There are lots of ideas for dressing aids at: https://www.livingmadeeasy.org.uk/personal care/equipment-for-dressing-2580/ presumably these would all also be available in the USA if you searched online. 

    Potentially also worth exploring if clothing adapted specifically for your needs would make life easier (for example replacing buttons with Velcro).

    Ideally, I think you need to be assessed by an Occupational Therapist who can advise on how your needs can best be addressed but I also appreciate that in American that can be expensive if it isn't covered by your medical insurance.  

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • crackercracker Member Posts: 324 Pioneering
    Many thanks, Jean. IO think Velcro would help, but my clothes are either pullovers or garments with buttons. I will have to look for Velcro garments one at a time (there isn't much money)..

    I saw my doctor today and he did prescribe O/T for the thumbs that subluxate and a sling for the arm that dislocates. He is also sending me to get Botox, methotrexate and a back brace and braces for the thumbs. 

    All of this really upsets me. I apparently in worse shape than I thought. It may be possible to slow down the progression of my conditions.

    I hope you re doing all right tonight.
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    Hi @cracker

    I'm pleased to hear that you have an OT referral, I hope that proves useful for you.

    I appreciate that exchanging all your current garments for ones that are easier for you would be an expensive undertaking. It is possible to adapt some button garments very cheaply if you know someone with basic sewing skills willing to help out.:
    1) cut the button off 2) sew up the button hole and stitch the button over it so that it looks 'done up' 3) apply an appropriate sized pair of pieces of iron-on velcro to the rear of the buttonhole and the surface where the button was previously attached.................now the garment looks like it is closed with buttons but is actually held closed with velcro......works best for garments that are not overly tight and are made of strongish fabric

    Best Wishes
    Jean 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • crackercracker Member Posts: 324 Pioneering
    Thanks, Jean. I do have a friend who could do this easily.

    Much of my problem is that most of my shirts and turtlenecks, most of my pants have elastic waists that are hard to pull up. I have no front-opening shirts of pants which are easy to pull up.

    I think I will have to go on Amazon and find inexpensive garments I can manage to put take off with one hand. Even socks are difficult.

    Perhaps the O/T person can help me out with this.
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    there are things that might help with socks, examples:
    https://www.completecareshop.co.uk/dressing-and-comfort-aids/sock-stocking-and-tight-aids/ The OT should be able to advise on this.

    Best Wishes
    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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