Hello from a newbie

Seasea
Seasea Member Posts: 9
edited 19. Aug 2015, 17:42 in Say Hello Archive
Hello all, I have suffered a dodgy left knee for years, but 3 arthroscopies have kept it going, now the "good" knee has given up the ghost. I apparently have patello-femoral OA.

A big nuisance as I now don't seem to be able to walk, so have had to give up my hobby of dog agility and can't even walk my dogs whereas I was doing 3-5 miles a day with them. New puppy also put on hold till I know what is going to happen :-(

Is it worth trying to get a blue badge so I can at least get to the shops? Is it worth trying to get registered as disabled, so I can get the VAT off things like a mobility scooter so I can at least get out a bit with the pooches?

Many thanks

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Seasea from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Moderator JK
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. OA is a blasted nuisance, it's painful, debilitating and frustrating but these may be the early days for you if it is just the one affected joint, which your post seems to indicate. From what you have said I doubt that you would qualify for a BB, the rules have tightened and those of us with mobility issues have to fulfil certain criteria to be considered but there's no harm in applying. I have two kinds of arthritis with around forty affected joints and may well lose my BB in the future thanks to the new regulations. I don't think that one is officially registered as disabled any more, when buying aids you complete a form that specifies the nature of the disability.

    You may not be able to walk the distances that you are used to but I am sure that you could still get out and about, taking a rest every now and again. Using a stick may help to ease the strain on the affected joint, it should be held in the hand opposite to the bad side with your hand positioned at just above hip-height. This will also help the strain on the joint on the opposite side, once one joint is out-of-kilter others can follow because we naturally change the way we stand and move in an attempt to reduce the pain. Good, supportive footwear is essential, this helps to reduce the impact of the foot hitting the ground. We need to keep moving to help preserve our muscle strength and flexibility, because they support our joints. It isn't easy to move around when feeling pain but it has to be done. What has your GP offered in terms of pain relief and medication? Has a timescale been mentioned about a replacement? I know one has to wait until a certain level of damage has been reached before that may happen.

    I understand this must seem like the end of the world to you because of the impact it is having on your lifestyle. It's a steep learning curve for all of us when arthritis decides to interfere with our lives, we're all facing it on here and can empathise. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Seasea
    Seasea Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you for the info DD :-), both knees are affected, as well as a thumb (so far) had an MRI last week, back to consultant in a month. Replacements seem to be off the menu as I'm not old enough! Really can't walk more than a few yards before joints stiffen and hurt - does anyone have experience of knee braces? They seem expensive, but if they help... Desperate to get some mobility back. Pain relief doesn't seem to help during actual exercise, and they don't hurt if not weight bearing.

    Have been on anti-inflammatory and cocodomol and cortisone jabs but no joy.

    TY Seasea
  • alumina
    alumina Member Posts: 40
    edited 30. Nov -1, 00:00
    Welcome to the forums but of course, am sorry for the reason why you have found us. It is very hard to cope with such a sudden change to your physical ability. My disability has mainly crept up on me so I haven't had those sudden shocks to cope with.

    As dreamdaisy has said, there is no national register of disabled people. A few years ago, I heard that energy providers were supposed to keep a register of disabled customers to enable them to expedite any issues extra fast. When I contacted my energy supplier, they rather patronisingly told me that they didn't keep such a register which goaded me into saying quite tartly "Well, whatever it is that you have, put my name on it immediately!".

    When I had a hip replacement a few years ago, I bought a shower seat from my local mobility shop. Again as dreamdaisy has said, I just had to sign a form saying I was disabled and I didn't have to pay the VAT.

    I hope you are keeping reasonably good in spirits? Very tough I know.
    "Always remember that you are absolutely unique. Just like everyone else."
    Margaret Mead
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello seasea and welcome from me, too.

    If you've been used to an active life this will be hard for you and I think you're very wise to give up on the agility trials (My sister used to do them with one of her dogs) and the new puppy.

    I'm not very familiar with patello-femoral OA (despite having acquired 3 new knee joints). Is it different from normal OA of the knee? Does it mean a new knee wouldn't be possible? I can't recommend them highly enough.

    When you say you 'don't seem to be able to walk' do you mean that literally or just the more usual thing ie it hurts and you can't walk far? If the former I think you should ask your GP for some physio and maybe a referral to an occupational Therapist for some walking aids. If the latter – ah, join the club.

    You can check your eligibility for a Blue Badge here. You have nothing to lose by applying. Even if refused, at least you'll have tried. Good luck.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Seasea
    Seasea Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you all for your advice and support and yes it has been a bit of a shock to go from being reasonably active (albeit a bit hobbly) to wobbling around like a drunken sailor and having to sit down every 50 yards or so when the pain gets too bad - and I realize that I'm just at the beginning of this journey. However, am determined to get out with the dogs and back to walking - my 89 yr old dad is more mobile than me and my 15 yr old dog can do running occasionally! Ho Hum!

    Seasea
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    If you need to sit 'every 50 yards or so' a rollator with a seat would help though probably not if you're trying to control dogs. How many 50 yard stints can you do in all?

    Exercise is good for us and walking is good though you might find cycling easier. With a machine one can stop anytime and not have to worry about t he return journey.

    One or two people use their disability scooters for exercising their dogs.

    What, if anything, has been suggested by the docs?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Seasea
    Seasea Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Stickywicket

    Nothing suggested by the powers that be yet. Had an MRI last week and have an appointment with consultant in a month. Just wondering if there's anything I can do in the meantime. This has been going on since November last year and am having a sense of humour bypass now, so decided to take things into my own hands and ask for advice on what I can do rather than focussing on what i can't. Went to an event I organised on Saturday and over the course of the day (6 hours) walked a whole 1.1 miles - result? Sunday I was chair bound :-( so I have to find ways of actually doing things. Knee braces seem to be all over the internet but at nearly £500 I can't afford to "suck it and see" Scooter is another option, but a proper all terrain one suitable for dog walking is an arm and a leg as well. Cycling is evidently a no no for my particular problem otherwise I'd get a trike!

    I have a tall 3 leg folding stool (fishing tackle shop) that I carry everywhere so I can sit when I need to - its really light with a carry strap and tall enough that I can get up off it fairly easily, so that's a start

    Seasea
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I like the idea of focusing on the positive. I'm sure it helps.

    A lot of 'arthritis' is about waiting – for appointments, meds, operations etc. There's no quick fix. Indeed, for most of us there's no slow fix either :roll:

    I presume you've been offered anti-inflammatories and / or pain relief. A steroid injection can also be an option. Simple exercises can keep the knee moving. (Put 'exercise' into the little pink search engine above. The official stuff comes up on the left and former threads on the right.)

    Yes, I think I've seen adverts for those knee braces. I have the simple, extremely cheap, neoprene type one can buy in the local pharmacy. If used with care they do a job. The key is to only use them for brief periods when the knee is under extra pressure. Overuse means the muscles weaken and that's the last thing we need. I aim for an hour and try to do no more than three ever.

    The all-terrain scooters look amazing but, I guess, out of most people's price range. Definitely out of mine. However, dogs don't have to be walked on country tracks although they're much more fun. Compromise is everything and a basic scooter would at least enable you to walk them on pavements in more comfort while you await what might be surgery.

    By the way, DD is right. There is no register of disabled people now. My local disability shop just asks me to write my condition on the invoice.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Seasea
    Seasea Member Posts: 9
    edited 30. Nov -1, 00:00
    TY Stickywicket, would have to be an all terrain scooter as we live in the middle of the country, in a village who are doing a bit by putting paths in across the playing fields, but they have left large chunks without!! A friend who unfortunately lost her leg when having a knee replacement (don't even go there!) now has a basic on roads scooter, but it can't go up steep slopes or over steps and she really struggles to walk her dog. When she lost her leg, the local dog walkers got together to create a "Bella rota" so she could keep her lovely collie/lab cross. She used to walk miles with that dog - it was always her you saw, out in all weathers. Anyway she can manage if she walks with someone else to open the gates etc and with a long poo picker so having seen first hand what her drawbacks are will be on the lookout for one of the three large wheeled ones (pre loved of course). will also have to get electrickery organised as we don't have a garage or driveway so not quite sure where it would find a charging station! lol