Home Adaptations
Key Messages:
Make your home adaptations ahead of when you need them. It will increase quality of life and take away a lot of stress as your illness progresses. Some items can have quite a long lead time and Kennedy Disease is a progressive disease. It will only go one way!
Thoughtful adaptations can significantly help you to reduce your dependence on your Carer. Carers need to be nurtured. We should be under no illusion – most Carers did not choose to be one.
Some Ideas on Adaptations:
Note: This list is far from exhaustive and what is right for one person living with KD is not right for another. That said, this list has been prepared by someone living with the disease.
Emergency Call System
An emergency call system can be invaluable if you fall over and are unable to get back on your feet. It will also give your family members peace of mind when they leave you on your own. Some watches, including Apple Watch, have an emergency call capability and are more discrete than something around your neck.
Through the floor lift or stair lift
A through the floor lift or stair lift is a great option if you struggle with stairs or simply carrying things up and down stairs. The stair lift is the cheaper option but, if you have the space, a through the floor lift, if installed in a cupboard, is the more discrete and the easier to use. Some through the floor lifts will accommodate a wheelchair.
A stair lift can typically be installed in a day and a through the floor lift in 2-3 days.
A mobility scooter, or powered wheelchair, can open up your life and make it possible for you to access places you might otherwise subconsciously avoid. They are great for trips around town and for accessing the countryside. KD-UK has partnered with TGA, and they oNer a 20% discount for people living with KD.
If you plan to use your scooter year-round it may be sensible to invest in a scooter with a canopy.
There are many highly portable foldable scooters and wheelchairs on the market that are great for putting into the boot of the car. The eFOLDi lite pictured here only weighs 15kg yet will still go over 10 miles on a charge.
Be warned though, that the small lightweight scooters are invariably less stable than a large scooter and need to be used with care.
If you suffer from respiratory issues or sleep apnea, an adjustable bed can make life a lot more comfortable. It can also make it easier for you to get out of bed!
There are many types of bath lift on the market. Some need professional installation and some are standalone. The Mangar lift in this photograph is not too expensive, entirely portable, works well, and is quick and easy to set up.
Simple things like a seat in the shower in the shower, a non-slip mat, and a low-profile shower tray, can make showering much safer.
Slippery bathroom tiles can be very dangerous for KD suNerers and bathroom mats/rugs are a trip hazard. There are many non-slip tiles on the market that really do work very well. Ideally, you want to source a tile with an R12 slip rating.
A rise and recline chair can be a great help if you have trouble getting out of a chair. The lifting footrest can also be great comfort to tired leg nuscles. There is a huge choice available and at varying price points.
Make sure that you tryout the cjhair before you opart with your cash.
If you are refitting your klitchen give thought to installing a high level combination microwasve and oven. This makes cooking much easier fior people living with KD and will stop you having to ask your partner everytime you want to put something in, or take somnething out, of the oven.
If you a are side sleeper a knee pillow is a really simple device to help you sleep more soundly. It can also reduce the risk of night leg cramps. They only cost a few pounds.
Another very simple fix is to install handrails both around the house and in the garden where there are steps. A bad fall can be devastating and is most definitely best avoided!