Tips & Advice

IF YOU LEARN, TEACH.  IF YOU GET, GIVE.

– MAYA ANGELOU

 

CLOTHING

  1. Stretch fabric is easier to pull over arms and legs than cotton/linen clothing.
  2. Pants with drawstring waistbands make it easier for helpers to grab and pull when moving you from bed to chair/car and vice versa.
  3. Wear layers so that you can either warm up or cool down without having to change clothes.
  4. When outdoors, wear a brimmed hat in summer to prevent sunburn and a beanie/hat/scarf/snood to prevent heat loss in winter.
  5. If getting arms into clothing is very problematic, cut open the backs of Tshirts and nighties/sleepshirts, hem the cut edges, and stitch on hooks & eyes or press studs or hook & loop tape.

COMFORT

  1. An air or memory foam mattress provides greater comfort and helps prevent pressure sores.
  2. Buy a memory foam cushion for your wheelchair.  It’s more comfortable, thicker than a standard cushion and retains its density longer.
  3. Support arms on pillows when in bed to reduce drag on shoulder joints.
  4. Place a rolled-up towel on either side of lower legs to prevent leg rotation.
  5. Ask your physiotherapist for aids that prevent shortening of Achilles tendons.
  6. In winter use a light fleece blanket instead of a top sheet to reduce heat loss through bedding.

COMMUNICATION

  1. Use charts if unable to speak.  See ICU page for more info, paragraph 2.
  2. Learn to click/cluck to draw attention if you can’t operate a bell.
  3. Wireless, battery-operated bells/buzzers are great because both ends are portable; the press-button transmitter can stay with the you and a carer can carry the receiver. No need to shout for help!
  4. Thank goodness for touchscreen technology.  To type this blog…
    1. I sit at a table with a 10.1″ Tablet placed on a recipe book holder, which is balanced on top of a tray and a box to get it to the correct height.
    2. I type by holding a rubber-tipped stylus between my teeth.
    3. A vertical pen holder is positioned on the tray in front of the book holder so that I can put the stylus into the holder whenever I need to talk or drink.  
    4. A small sponge is wrapped around the mouth-end of the stylus, and is secured with an elastic band.  The sponge and elastic band are washed every day
  5. My touchscreen phone is also placed on the tray when I work on the Tablet so that I can make and receive calls as well as create and read SMS’s.
  6. Skype enables me to see and communicate with people who are not able to visit.

ENTERTAINMENT

  1. I love reading but don’t like having to rely on someone to turn pages.  Now that I can move my arms and hands, my carer places a rubber thimble/thimblette (available from office/stationery suppliers) on my index finger so that I can now sit in a quiet space and turn pages myself.
  2. A portable radio/CD player/multimedia player to listen to news, music, chat programmes, audio books, etc.
  3. eBooks.
  4. Television.
  5. DVDs.

FINANCIAL

Fortunately, we belong to a very good health insurance scheme – Discovery Medical Aid .  There are certain expenses that are not covered and we have to fund these ourselves, but the majority of my expenses have been covered.

Depending on your personal financial circumstances you may need to consider some of these options:  

  1. Health care insurance.
  2. Hospital cover.
  3. Income protection policy.
  4. Disability insurance.
  5. Life insurance.

SURROUNDINGS

  1. A clock helps me plan my day and keep track of time.
  2. Photos and messages from friends and family were invaluable when I was in hospital as they were constant reminders of the people in my life.
  3. If possible, position your bed near a window which has a view of the outdoors.
  4. Depending on whether you live in a house or an apartment, you may need ramps to move around inside, get outside, or into a vehicle.

© louisehasgbs 2014. All rights reserved.

Disclaimer: This is a personal account of my experiences. Discuss all treatment, therapies, medication, diet and supplements with your own doctor and/or specialist.

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One Response to Tips & Advice

  1. betsy says:

    I was diagnosed with GBS after receiving a flu shot Nov 2013. I am now walking without the aid of walker/etc. The fatigue level is hard for me to deal with, since I always had a very active lifestyle.
    I now have CIDP and receive IVIG every 4 weeks. I have met and heard about people that got GBS from vaccination’s. I tell everyone I see to not get a flu shot. This has been a journey, however I have Jesus in my life, and some wonderful Dr.’s

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