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Strategies for Coping with PMR and GCA

Fri, 01/29/2010 - 18:14 — Bea

ORGANISATIONS

Angus Long Term Conditions Support Groups
www.altcsg.org.uk

Angus CHP have just produced a new DVD which is based on the self care toolkit booklet by Pete Moore and Dr Frances Cole a GP and is available to be viewed online in two formats from the following site NHS TAYSIDE

The video is well worth a viewing as it reinforces the learning that we from the booklet or through attending various courses or groups the added bonus in my humble opinion is the lady who narrates the DVD has a smooth relaxing voice so its good to close your eyes and just listen to her talk you through the toolkit points and relax while doing this!

Social Work Department (Scotland)

    Will assess house for provision of aids, for example:
  • Hand rails in corridors, at steps, in bath.
  • Bath aids and raised toilet seats.
  • Perching stool, trolley and walking sticks.
  • Grab for picking up articles.

    • **Various catalogues are available: These cover many aspects of inability to cope with everyday tasks. **

  • Community Alarm Service

    • **The cost was £3 per week in Perthshire, but gives peace of mind to those living on their own.**

    Occupational Health Service Tayside
    Tel: 01382 346 030

    Princess Royal Trust for Carers
    Provides information and support for carers and disabled people
    www.carers.org

    Arthritis Care Scotland
    Arthritis Care Scotland run Self-Management courses for 'Challenging Your Condition' and 'Challenging Pain'. For more information contact Alex.
    Telephone: 0845 600 3756
    Email: alexf@arthritiscare.org.uk
    Post: Arthritis Care in Scotland, Unit 25A, Anniesland Business Park, 242 Netherton Road, GLASGOW, G13 1EU.

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    Publications
    'Living a Healthy Life with Chronic Conditions'
    Bull Publishing Company.

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    A Daily Tonic

    This is a little tonic
    Daily to be taken,
    With essential ingredients
    Stirred but not shaken.
    Take a good measure of hope
    Add positive thought,
    Mix well with courage
    Blend faith in the lot.
    Pour in perseverance
    This essence a must,
    Sprinkle in laughter
    Then savour with trust.

    M.D. Dundee.

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    Miscellaneous Hints
    We are all aware that reorganising our cupboards and drawers so that the items used most often are to hand, cutting out the bending and stretching, which are fine as gentle exercises but not when you’re in a hurry.

    • Don’t try to lift heavy pots; Take a small container to the pot and remove desired quantity.
    • Get a long handled brush for doing hair when you can’t lift your hands above shoulder height.
    • Same styled brush can be used for feet in shower. If shower is over bath, put in plug so feet get a soak.
    • A laundry trolley is a great boon if you dry clothes outside. One end of a large item can remain in the trolley while you struggle to attach the other end to line. **This idea will only work when our condition is less severe.
    • Use a grab or walking stick to help smooth the duvet in place on the bed.
        • When things are really bad and dressing is a problem, ladies,
      • try to use garments which fasten down the front and don’t have to go over the head.
      • Slit nighties down the front and pants down the sides, and put on some fasteners or better still Velcro.
    • For those kind friends who say, “Just tell me how I can help”, suggest they do the above conversions and you’ll soon find out if they really mean what they say!
    • Use low energy bulbs because they are unlikely to need replacing, thus avoiding the temptation to climb on a chair or steps.
    • For those who have a weakened grip on pens, for example, special grips can be bought to fit over the stem. At least one supermarket is stocking retractable pens with rubberised stems.
    • For removing caps and tops from bottles etc., an ordinary green scouring pad can be more beneficial than some of the special gadgets available.
    • A good coating of nail-hardener can be effective for splitting finger and toe nails – repeating every few weeks.
    • When you feel you could cope with a little weeding, use two kneeling pads side by side and simply move across from A to B, then put A on the right side of B ready for the next move and so on.

      • **This avoids getting up and down until you come to the end of a row. An upturned box placed at the end of the row before you start and on which you can lean is helpful.

    • If a duster is too heavy try a feather duster.
    • Take life day by day and don’t dwell on yesterday if it was a bad day.
    • Look forward in hope.
    • Diversion therapy: e.g. hobbies.
    • Pamper yourself occasionally. You deserve it!
    • Gentle exercise, stretching the limbs even when sitting.

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    When I wake up in the morning I lay for a while and ask myself where the pain is today. Sometimes it’s in my hands and arms and sometimes in the thighs and hips. I no longer question why it's where it is. What did I do yesterday that caused this? I accept it is where it is and decide what tasks I will be able to carry out today with the pain in that part of my body.

    When fatigue engulfs me I lie down, even if it’s only for 15 mins. I don't necessarily sleep. Just lying down can help to rejuvenate.
    To keep my muscles exercised I walk as fast as PMR will allow for about 2 miles on the flat twice per week. Also I attend aquafit classes twice per week. I highly recommend swimming and aquafit for PMR. It really helps to loosen up the muscles and gives you back some control of your body.

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    Helpful Ideas and Activities

    • Hydrotherapy
    • Setting targets
    • Be content with what you can do each day, e.g. taking 3 days to do 1 hour’s ironing.
    • Pacing yourself (not easy when you’re feeling good).
    • Take frequent rests.
    • Change activities so that you’re not using and possibly tiring the same muscles.
    • Swimming
    • Cycling
    • Walking - even just a short walk every day.
    • Gardening -you are at home and can rest whenever necessary.
    • Meditation -many find this very helpful and there are lots of CDs available.
    • Relaxation - there’s a wide selection of CDs available
    • Don’t try to do too much but don’t give up, keep trying.
    • Do something that you enjoy that isn’t energetic when energy levels are low e.g. reading, listening to music, watching TV.

      • **Use it as a learning opportunity. I learned that there were TV programmes which I could enjoy. I even learned that there could be two on at the same time. So I learned to record and even to play back.
      It can even be good for a marriage! I learned to accept help (not easy) and my husband learned to give help for years without a complaint. **

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