To my mind this is by far the most expensive aspect of MND.
Some disabled persons are ‘lucky’ enough to live in a house that is either suitable for their needs or easily adaptable. Most of us are not. We either have to move to a more suitable property such as a bungalow or adapt the house to our ever increasing needs. If you decide to move bear in mind estate agent fees, conveyancing fees and stamp duty. It is essential that the property you are purchasing has the ability to be adapted to your continuing needs such as doorway widening, access to a wet-room and bedroom as well as the other rooms in the house. Also, easy access to the garden. The rooms MUST be large enough to accommodate hoists and wheelchairs and other paraphernalia required for a person who will end up needing complete care. If you decide to stay put and adapt, make sure that any adaptations made will be suitable for later on when your needs change.
A paraplegic has a need which may change slightly as they age but, generally, they remain fairly stable within their requirements; therefore, any adaptations made will more or less be suitable for their lifetime with minimal adjustments.
MND patients, on the other hand, due to their continuing disablement, will have changing requirements during the course of the disease. Any adaptations made to a house need to take this into account and be flexible enough to accommodate these requirements.
ENTRANCE INTO HOUSE
When you are still able to walk but have difficulty with steps you could install rails up the steps or on walls either side of the doors (OT may provide the rails for the walls but probably not up the steps as a result of a means test) to enable you to mount the steps or a ramp to walk up.(OT probably won’t supply ramps- means tested)
If there are many steps you may have problems. However, if the rest of the house is easily adaptable it may prove less expensive to just buy or build a ramp or a zig- zag pathway to get to the house. Look at all options first before considering moving. Moving house is expensive and many barriers can be overcome for less expenditure. Get your OT in to advise you before undertaking large adaptation projects. They should come armed with leaflets and information. Ask as many questions as are necessary – make a list so as not to leave anything out.
If there is only a slight step there are portable ramps available at varying lengths and widths. Make sure that you research the internet as prices vary considerably.
If you don’t mind second hand, look for these on E Bay.
If you live in Surrey, Sussex or Herts there is ‘Ask Des’. A charity website
There is also Disabled Gear. A free website set up by a disabled guy.
There are also ‘threshold’ ramps which enable you to get over a lip at your front door.
DOORWAYS/INTERIOR ACCESS
Once inside, if you are in a wheelchair you may need wider doorways. Rather than spend a fortune widening them you can, sometimes, get away with removing the door and getting rid of the architrave. This will be much cheaper.
There may be more steps inside where a ramp is needed. Access to the garden may be limited and another ramp needed here. Remember, ramps are portable and second hand ones are not expensive.
TOILET AND BATHROOMS/WET-ROOMS
If you have decided that your house will be suitable for adaptation think about access to toilets, upstairs and downstairs as well as access to your bathroom.
Once you are confined to a wheelchair you will need a toilet large enough to accommodate one. Your bathroom will also need to accommodate a wheeled shower/commode chair or a wheelchair or ceiling/mobile hoist. Will you need to turn your bathroom into a wet-room? Grants for this work are only given to those disabled persons with less than £23,000 (check this) savings. Otherwise, the cost is down to you. There are specialist companies which will install wet-rooms; however, if you have any builders whose work you know well or have one who can be recommended to you, this may be a cheaper option.
It is possible to buy all of the equipment for wet room from the Internet, which reduces the cost substantially. I found this company when I was researching for a possible wet-room for downstairs (we decided to have a through-floor lift). Their prices seem to be very competitive. For our wet-room upstairs we chose a company which does a lot of this type of work and was recommended by a friend
There are shower toilets available which are extremely useful. There is the Geberit , and the Closomat. They can be made much higher than the average toilet to allow for standing up as your legs get weaker. Best to get it as high as you possibly can and still be able to reach the floor with your feet.
The Closomat comes with the possibility of an electric toilet seat riser but is extremely costly (upwards of £2,500 just for this). It is possible to ask your OT to refer you to MND Connect which may well offer you a grant towards your work or lend you a toilet for the interim.
The Geberit comes with a remote as standard but the Closomat does not. Closomat has a seat lid, Geberit does not.
Leave plenty of space round the toilet for a frame to aid standing or a commode shower chair.
Under-floor heating, if you can afford it, is a bonus in a wet-room; I love mine. I also have a body drier (see website above). If you are considering fitting a fold down shower chair think about the future when it is no longer suitable and you have to remove it; you will have holes in the tiles. Mobile shower chairs may be a better option. These are available with wheels or castors but these are extremely expensive. Again, research and look on E Bay or put a wanted ad in ‘Ask Des’ if in the catchment area.
Folding shower doors or half shower doors are a possibility in a wet room, especially if someone is washing you. If this is not possible, then, shower curtains are fine. I currently have shower curtains but am considering the purchase of a folding half door so that someone can lean over and wash me without getting wet feet.
Make sure that you do not have a fixed shower but one with a removable, flexible hose. It needs to be able to go down low enough to properly spray a seated person and is removable from the holder so as to be able to spray over the patient if a carer is doing the washing.
Grab rails need to be put on the walls in appropriate places. Check with the disabled person about where to site these as this is very important. Do not use the suction ones; they seem ok, then, they will suddenly come away – dangerous (I experienced this).
Make sure that the taps have levers and are not the standard type and that the sink can be accessed from a wheelchair or shower chair.
THROUGH-FLOOR LIFT VERSUS STAIR LIFT
Make sure that the decision you make here is the right one. We wasted money having a stairlift which is no longer suitable. £7,000 down the drain
Ask your OT to come and discuss the options (again, you may not qualify for a grant) as to what would be best for you. Stair lifts can be expensive. Search the internet for the best price; there are also second hand ones at knock down prices if you have stairs with a ‘straight-run’; but they still need to be fitted. Some companies will do reconditioned ones. Bends in the stairs mean that the design and build will be a lot more expensive. Don’t just go for the major name as they are not necessarily the best. Also, local companies will, often, be able to install these top named ones more cheaply.
There may well come a time when a stair lift is not suitable; transferring on and off may well become too difficult. The other option is a through-floor lift. The most important aspect is the footprint required for this appliance. There are only 2 or 3 companies which do these and only one does a large lift. Check the size and weight of the wheelchair before considering one. Terrys do a large lift, suitable for chairs up to 1300cm and weight (total) of 250 kg. The Wessex is smaller and will only take up to 180kg. These are the two main companies. You may be able to get local companies who are installers to come along and quote. That way, you have a local company if anything goes wrong. Call outs are simpler if you have a local company.
DOWNSTAIRS LIVING
Some people prefer to move their whole life downstairs to avoid the problem of accessing the upstairs. This can be easier for the patients but think about what you have to do to get the house back to a ‘normal’ state. It may be simpler to remove a through-floor lift. A lot of thought is needed here. We decided that the cost of a through floor lift was less expensive than a wet-room downstairs and easier to return to ‘normal’ after my demise!
For downstairs living you will need a wet-room and a bedroom big enough for hoists, a hospital bed and a wheelchair. Think about the spouse/carer and their well-being and comfort as well.
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