Now, that’s a great idea!

09 June 2021
Anonymous

Gadgets and products that members say make their lives better.

We asked MDANZ members to tell In Touch readers about their favourite and most useful gadgets – those products that make you wonder why you hadn’t heard about them earlier.

NAME: Peggy Lake
CONDITION: Facioscapulohumeral muscular dystrophy
PRODUCT: Ceiling Track Hoist - Maxi Sky 2

I wrote an In Touch article many moons ago, about my journey of transitioning from walking to being a power chair user. Anyone who read my story will recall that the power chair, a much-dreaded piece of equipment, was in fact life-changing.

Today I write to share my good luck, in discovering another wonderful piece of equipment.

A ceiling track hoist. Why did no one tell me about these sooner?

I broke my ankle five years ago and after being in a cast for 16 weeks, I lost the ability to do a standing transfer. The lives of my husband Gary and I changed dramatically because I suddenly required full hoisting, for all transfers, forever.

My occupational therapist arranged delivery of an old-style manual hoist. Although we had previously modified our ensuite to install a wet area shower, maneuvering a manual hoist was still challenging.

We struggled for two years before we discovered another option was available.

By chance my sister Andrea met someone who worked for a client who had a Ceiling Track Hoist. Andrea told me about this exciting alternative, so I contacted my occupational therapist and yes, I was eligible to apply for Enable funding.

My occupational therapist recommended a Maxi Sky 2 from Arjo Huntleigh. This was duly approved.

I opted to make a $2000 contribution so that the hoist could be wall mounted, giving a full range of travel in any direction, rather than on the stands Enable would fund which limits the range to left and right only.

The Maxi Sky 2, [as demonstrated by Peggy's husband Gary] is installed, stored and operated so that a single carer can transfer me without any manual lifting, thereby helping to reduce the risk of injury to themselves or to me.

Once I’m in the sling and hooked up, the carer pushes the button to lift me up, then with the slightest push by my carer, the Maxi Sky 2 glides me through the room from bed, to commode, to power chair, etc. All my carers and family absolutely love the ease of use.

Most pleasing of all for me, is that my carers stand to the side rather than directly in front of me and getting an unflattering view whilst I’m hanging in mid-air!

Using the Maxi Sky 2 is a far more dignified experience for individuals requiring hoisting. In my opinion, this benefit alone warrants the investment.

Go to https://www.arjo.com/int/products/patient-handling/ceiling-lift/maxi-sky-2/ to find information about this product.

It pays to do your own research on what’s out there and to listen and learn from each other. Armed with information about equipment you know will transform your life, go to your occupational therapist and ask for their support in applying for funding.

Good luck.

One last tip from Peggy
Let satin become your friend. For a decade I’ve been using satin sheets and satin pyjamas to assist with movement in bed so when I became a hoist user, it was obvious to me that I needed a satin sling.

This makes it easier for my carers to get the sling in place, easier to pull it out when finished and it is much gentler on my skin.

My occupational therapist thought this was such a great idea (really! but it’s obvious isn’t it?) that she had my spare sling covered by the hospital seamstress.

Even though I use satin sheets and pyjamas I also have an empty satin pillow slip under my hips when in bed. My carers pull this to rotate my hips slightly or when turning me.

Lastly, I sit on an empty satin pillow slip laid on top of my power chair cushion. This enables me to make slight adjustments to my position when seated.

Satin has made a huge difference to my comfort and the ease with which my carers can move me.

I hope you become a satin convert, if you aren’t already.

*****************

NAME: Heather Anderson
CONDITION: Charcot Marie Tooth disease
PRODUCT: Billy shoes

These shoes have a zipper that goes along the outside of the shoe and around the toe, allowing the upper of each shoe to open and fold over completely. The foot can be placed on the footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures over top of the foot.

Unzip, flip, zip, and go, so easy.

Heather Anderson says her Billy shoes are easy to put on and take off.

Billy shoes have a big range of sizes and styles, from toddler to adult and they are reasonably priced.

I have funny feet that are hard to fit. Feet that are wide, with pulled up arches, and bent toes. The shoes that I used to wear, they were longer than they needed to be, to fit my funny feet.

Also, as I wear ankle-foot orthosis (a brace or splint), getting one’s foot into a shoe can be an interesting mission and tiring to say the least. I have muscle waste in my fingers, so laces can be quite fiddly and hard to do up. Whereas these Billy Shoes are so easy to put on and take off.

Emma from Adaptive AF Footwear said she has never found a foot that she hasn’t been able to fit. I said: “You haven’t seen my feet.”

I now wear a kid’s size 5 wide shoe and these shoes fit properly.

[One place where] Billy shoes can be found is Adaptive AF Footwear. It is a small family run business. They are happy to arrange a fitting for those that live in or around Auckland. Customer service is fantastic.

*****************

NAME: Mitchell Fels
CONDITION: Duchenne muscular dystrophy
NEED: Keeping warm in winter

Hi, my name is Jan Fels and I live with my husband Paul and son Mitchell, aged 27, who has Duchenne muscular dystrophy.

Keeping Mitch warm is a number one priority in our household, and we have found some amazing accessories that assist Mitch with this.

The first item is a heated throw blanket. Mitch has had a few of these which are really good for keeping him warm when he is at his computer. He also has a fan heater that he uses too.

The second accessory that Mitch has is heated slippers. We got onto these a few years ago after a friend told us about them. They are a bit expensive but for the price they have been a godsend for Mitch and his cold feet.

They have rechargeable batteries that sit in a pocket on the ankle and have three heat settings. The soles of the boots are heated by these. They last for a few hours on the low setting but of course would run out quickly on the high setting. Good value though!

The third accessory that we have is the Under The Weather chairpod. I found these last year and we decided that Mitch would benefit from one of these for when we are out and about during the cold months. Cost was okay and not too expensive. https://utwpods.com/products/chairpod

Lastly, we have the hand warmer that attaches to the driving console of the wheelchair. This has been a totally amazing piece of equipment that has kept Mitch driving through the coldest temperatures, even the extreme cold of being in New York in April. A brilliant invention! [These were found at] www.mo-vis.com/en/products/mo-visproducts/hand-warmer.

A heated blanket keeps Mitchell Fels cozy, left, heated slippers have been a godsend, a chairpod fits over his wheelchair, and a hand warmer keeps his hand toasty when he is driving his wheelchair.

*****************

NAME: Denise Ganley
CONDITION: Limb Girdle muscular dystrophy
PRODUCT: Powerfit Powerlegs

Powerfit Powerlegs is a vibration and acupressure system which helps improve circulation without exercise.

When a person sits for long periods, the body has to work harder to bring the blood back up to the heart from the legs and feet. As a result, blood pools in the lower extremities.

This pressure causes the veins to expand and seep out water into the surrounding tissues. Oedema (or Edema) is the abnormal accumulation of fluid in certain tissues within the body.

The accumulation of fluid may be under the skin – usually in dependent areas such as the legs, feet or arms and is common for people who are sitting in wheelchairs for long periods of time.

I was admitted to hospital because of this and was diagnosed with Chronic Venous Insufficiency. This is when the venous wall and/or valves in the leg veins are not working effectively, making it difficult for blood to return to the heart from the legs.

CVI causes blood to “pool” or collect in these veins, and this pooling is called stasis.

I use Powerfit Powerlegs for around 20 minutes each day, usually in the evenings before going to bed, and have found that it keeps the oedema under control much more effectively.

The vibrations help move the fluid around and then they drain better overnight.

It’s easy to use and I can do it from the wheelchair.

*****************

NAME: Lynda House
CONDITION: Cerebellar ataxia
PRODUCT: Decorated walking sticks

I am a newbie to MDANZ, although I have had cerebellar ataxia for 50-odd years.

I have been asked to tell you about my walking aids – they are cool looking walking sticks. One is pink with a super New Zealand looking pattern all over it (lolly pink with bluish and grey black patterns).

It has a very comfy hand cradle in pink and the foot tip is also matching rubber. I found this one by Googling “walking aids in NZ”.

The other is metallic purple with a claw base (very pretty). It is a HurryCane and stands on its own but only if the floor is level. My daughter gave it to me with cellphone charms attached to the elastic piece that wraps around the stick before the hand loop.

Over the years they have gone but I replaced them with earrings - a much cheaper option and they too can look good depending on the occasion.

These sticks have aided me sporadically in the past, but my walking has worsened, and I now need a stick all the time as my balance is not good.

As a female I coordinate with the colours in my hair that my grandchildren colour frequently.

Lynda House shows off her pink walking stick and matching hair, left, and the HurryCane walking stick that stands on its own.


The gift of a tip

Many thanks to these members who have shared their useful gadgets with In Touch. If you have an item you’d like to tell others about, please let us know.

We’re also interested to hear from manufacturers or retailers who have a product they think may be useful to our members.

Email: [email protected] and use ‘In Touch product tip’ in the subject line.

* This story was originally published in the Winter 2021 edition of In Touch magazine. 

For more information please contact:          
Melanie Louden 
Communications and Marketing Advisor 
Muscular Dystrophy Association of New Zealand 
027 509 8774 
[email protected]