Cathie's Corner - MS Awareness


Some practical information to make living with Multiple Sclerosis (MS) easier


As with so many complex conditions Multiple Sclerosis (known as MS) is different for each person and whilst there are many symptoms that are widely experienced, everyone’s body is unique and reacts differently.

 

I found a lovely quote from Dolly Parton that resonated with me and I feel that some of us “helping types” should heed:  Dolly said, “I don’t like to give advice. I like to give people information because everyone’s life is different, and everyone’s journey is different.” 

 

Well-meaning friends will frequently offer anecdotes about something they’ve read or someone they know who tried a different diet, activity, medication or other intervention and benefitted greatly and they might suggest this to those living with an ongoing condition. We all need to consider whether this is received as helpful (of course our intent), or may feel like we think that they’re not already putting in their “best efforts” at recovery or wellness. I’m pretty sure they are!

 

In the spirit of general good health and getting the most out of life and considering that most people living with MS will already have many professional and casual inputs, I thought it might be most useful to provide some information about some ways to do things more easily.

 


How to get better sleep quality and quantity

Sleep quality and quantity can be very important to our feeling of wellbeing and getting the most out of life. With MS more than most chronic conditions fatigue can be prevalent and getting adequate sleep can be very difficult.

 

1. A good sleeping mask (total blackout is my personal preference)

Block out light with the best sleep mask on the market. With soft moulding form that sits comfortably over your eyes creating complete darkness without squashing your eyelashes.

 

2. Positioning and heat sensitivity solutions

  • A comfy bed, such as an electric adjustable bed, with a cooling mattress pad and pillow option if temperature regulation is a difficulty, can be 'gifts' to an improved view of the world on awakening. Try to give yourself the very best chance at a restoring rest by working on positioning support and temperature control as needed for comfort and sleep.

    iCare BediCare - IC333 Electric Adjustable Bed

    Available in Stone or Black and in various bed sizes

    $3,500

 

  • There are cooling gel mattresses pads and pillows that might help to reduce the sensation of discomfort and overheating that many people experience. The Memogel cooling mattress pad that you can use on any bed might provide relief. The Gel Layer uses conduction to transition heat out of the body and into the overlay. The mattress will eventually reach body temperature as the product is not powered electrically but the cooling effect can begin once again as soon as you move position slightly. Dissipation of heat will occur naturally during the night with the most significant cooling effect occurring when you first go to bed enabling you hopefully to drop off to sleep in a cooler state. The Complete Sleeprrr pillow works in a similar way.

    Memogel cooling pad

    Memogel Cooling Mattress Pad

    Available in Single or Double size

    $235

    Complete sleeprrr gel pillow

    Complete Sleeprrr Pillow Gel Blue

    Memory foam pillow with cooling effect

    $119

 

Bonus info

If heat sensitivity, a common issue in MS, is causing ongoing disturbance and discomfort preventing rest, an electronic bed cooler might be worth considering. The Hydrosense cooling system is a clever device that does really the opposite of an electric blanket – it cools rather than heats.

 

It's genius really - instead of having a network of wires that heat on command, it has a network of fine plastic capillaries that carry cooled water from the pump unit to keep your bed at a pre-set temperature continuously taking the heat away from your contact points and replacing the water with cooled water to cool you. The system has a bed pad to lie on, and various additional accessories that you can apply to the hottest parts of yourself to manage your temperature to suit your comfort level.

 

There are smaller bed pads to position over you as well as under the body, there are foot and leg cuffs, a neck wrap, back and shoulder vest and a lumbar strap – you can choose the accessories to focus the cooling where you need it most. 
If you’d like to discuss this product and find out more please contact
[email protected] and we will give you a call back to provide more information for you to discuss with your treaters and see if this might be suitable for your situation.

 


Mobility – keeping active and staying mobile safely

Along the MS continuum there will be times when most people will experience mobility or walking challenges – “tripping on air” as one writer has observed of herself. Getting around easily is key to our involvement in so many social, daily living and working activities so it’s very important to maintain as much strength as we can and use whatever assistance needed to do this without undue fatigue and to stay strong and safe. We have a few suggestions depending on the environment, what you want to do and your current physical capacities.

1. Getting around easily

For getting around the house and walking short distances when you need a bit of walking support, an indoor trolley with a convenient carrying tray and basket can offer extra stability, avoid trips that can result if you’re carrying things that hide your feet (like the washing for example) and do the carrying for you.

  • Neat walker support and tray/basket combo

    trustcare indoor rollator beech and red colour

    Trustcare Indoor Rollator

    Available in Beach or Red

    $530

  • Two levels of carrying

    Adjustable Height Trolley Walker

    Adjustable Height Trolley Walker

    $175
  • Super lightweight and compact walker
    If you don’t need as much “carry” capacity but a bit of support from a neat little compact support have a look at this as an option. They’re great to take out too as they fold umbrella style and will stand nearby taking up very little space say in a café or office.

    Stander EZ fold n go walker

    Stander EZ Fold N Go Walker

    Available in Black Walnut, Rose, or Cobalt Blue

    $299

 

  • Discreet and multifunctional walking support
    Also for helping inside the house but a must for shopping and exercise combined outings try the Playmarket Playcare shopping trolley – takes a “full lean” so is very supportive as a discreet walking aid, carries a LOT home for you with no strain, and has accessible zippered compartments in the front and easy top access too with no bending.

    Playmarket playcare trolley folded

    PlayCare Trolley

    Available in Dark Grey or Navy Blue

    $199


    The other trolley from Playmarket, the WeGo is a real carry pal with great capacity able to carry elderly or tired dogs (true – one of our clients told us that since her dog got old she’d deteriorated because she wasn’t walking him anymore – this manoeuvrable trolley has her out there pounding the pavement with a contented pooch once again- a win win for both)! Also handy of course for shopping, carrying washing to and from the line or to put things away around the house – just load up and go from room to room.

    Playmarket wego trolley folded

    WeGo Trolley

    Available in Grey or Jeans Blue

    $180

 

2. Walking support + full body workout

The options above are great for supporting a walk and incidental exercise activity, then our Urban Poles are my enthusiastic suggestion for a supported yet full workout – done at whatever level and pace suits your style and condition. As we all know maintaining flexibility and muscle strength as well as cardio vascular fitness are all good protective activities.

 

The great thing about Urban Poling is that they offer extra points of balance while we walk and use pretty much all the muscles in the body in some way helping us to benefit upper and lower limbs and strengthen and use our core muscles at the same time. Walking is beneficial to the circulation and our waste elimination processes (bladders and bowels are well known to cause challenges at various times for those living with MS and exercise can be useful in regulating these systems too).

 

  • Designed by an Occupational Therapist, Activator Poles are designed to increase safety, performance and stability, normalising walking pattern, and promotes increased functional independence and confidence.

    Urban Poles Activator 2 for balance and rehab

    Urban Poling Activator 1

    With Bell Tips for balance and rehabilitation

    $150

    Urban Poles Activator 2 for taller user

    Urban Poling Activator 2

    With Bell Tips for balance and rehabilitation for taller users

    $159

 


Making daily tasks easier

For daily activities don’t overlook the benefits of “gadgetry”. There are so many clever little products to make cooking, pouring, opening things, slicing things much easier and just possible.

1. Bring back your kitchen confidence

Have an explore around the kitchen and meal prep area to see a range of things you might not have known about.

When eating and drinking are causing challenges, our lightweight, large grip and angled cutlery as well as extended straws, various drinking aids, assistance with dysphagia to make swallowing safer, and even our Swedish robot, Bestic robotic feeding helper, to silently offer your food spoonful by spoonful – we have ways to help assist independent and safe eating see the options and ideas.

 

2. Make getting ready easier

Dressing and reaching assistance and even gardening supports are available to aid weakened hand grip or arm strength as well as to compensate for reduced flexibility or reach. We have continence aids and 'just in case' undies, furniture protectors, bidets and bathing, showering and toilet aids to make dealing with our daily functions as trouble free and energy efficient as possible.

 

MS awareness ribbon

 

The big message here is the right 'tools' are very often available to help you to do most functions in life – don’t struggle when products are readily available to make things easier. My general, but I think good advice is, work out what you want to do most, and what you need to do, then make sure you plan to conserve or create the energy to do it and use whatever means to make it possible, enjoyable and safe!

Please let us provide the information you need to live your best life – we love to help people to find the best solutions possible so chat with one of our friendly & knowledgeable Leef team members at one of our 16 independent living stores around Australia.

 

Cathie's illustration

- Cathie

 

 

Email: [email protected]