So, you are beginning to be a little ‘wobbly’ on the pins. What should you do for the best? The obvious answer is a walking stick, or two. Beware. Walking sticks can be a useful aid when having initial difficulty; however, do not use them for too long. Once you are tripping up to any extent they will not prevent this, neither will they stop you falling over backwards. If you are at all concerned about tripping or falling, then, opt for a walker. You can start with a three wheel walker as these are small, lightweight and easily foldable. They can have a bag, basket and/or tray on them making them useful for carrying things around. Do not buy a new one as they are ‘out there’ in their hundreds, second hand for next to nothing. Make sure that you get a lightweight one, not a steel one; these can be heavy.
Even when using a wheelchair the walker (rollator) can be useful indoors for getting places (slowly) or just transferring from wheelchair to bed, toilet, riser-recliner, etc. When you become more unstable the three wheel walker may tend to tip up, making it dangerous. Time to start using a four wheeled one. There is a variety of these on the market. The best ones are quite expensive but are worth it. They tend, in the majority to have a seat and, sometimes a bag or basket. I have got to the point whereby I lean on the walker far too much and can easily tip it; I am only using it to transfer and walk a couple of steps but have now got an ‘Etac’ one which is very wide. Make sure that you research well and try before buying if possible.
Next 'step', may be the wheelchair. However, you may opt for a mobility scooter. These can be limited in their usefulness for a person with MND; however, the carer of an MND patient has said that he found a scooter extremely useful for a while; so, try it for yourself, it may suit. Another MND guy used one all over Europe for a couple of years. Once your balance is affected, be careful as it may be difficult to mount and dismount the scooter.
Remember, you can buy them second hand very cheaply if you can't get a scooter from wheelchair services. If you choose a small one because they are easy to transport, they are quite restricted in their capabilities. They will only really be suitable for flat surfaces, the three wheel version is quite unstable. Larger scooters are not very transportable but can mount kerbs etc. Just beware of the drawbacks.
Wheelchairs are, generally, available through your local wheelchair service. Ask your OT or physiotherapist or neurologist to refer you if they have not already done so. Unfortunately, this is still very much a ‘postcode lottery’. There is a scheme which is sponsored by Lord Cadbury whereby chairs can be purchased through MNDA Oxford. However, this service is only available in a handful of local wheelchair services so far. Some wheelchair services will offer a voucher scheme if you want a chair which they do not normally provide. They will give you the value of the chair which they would have offered plus a fixed sum to cover mainteneance; you then purchase the chair yourself from a supplier and are responsible for the maintenance. On the plus side, the chair belongs to you and you can dispose of it and use the monies towards another chair when your requirements change.
Remember, you can buy them second hand very cheaply if you can't get a scooter from wheelchair services. If you choose a small one because they are easy to transport, they are quite restricted in their capabilities. They will only really be suitable for flat surfaces, the three wheel version is quite unstable. Larger scooters are not very transportable but can mount kerbs etc. Just beware of the drawbacks.
Wheelchairs are, generally, available through your local wheelchair service. Ask your OT or physiotherapist or neurologist to refer you if they have not already done so. Unfortunately, this is still very much a ‘postcode lottery’. There is a scheme which is sponsored by Lord Cadbury whereby chairs can be purchased through MNDA Oxford. However, this service is only available in a handful of local wheelchair services so far. Some wheelchair services will offer a voucher scheme if you want a chair which they do not normally provide. They will give you the value of the chair which they would have offered plus a fixed sum to cover mainteneance; you then purchase the chair yourself from a supplier and are responsible for the maintenance. On the plus side, the chair belongs to you and you can dispose of it and use the monies towards another chair when your requirements change.
Criteria for getting a chair in each health authority differ greatly. It is a bit of a minefield and it can take quite a while to get one. One friend was offered, precisely, £400 for a chair (those of you in the know will realise that this amount is laughable and will only be enough to purchase a cheap, manual chair). Another friend was refused an electric chair because she only required it when outside!! Make sure that you keep on top of them if you do get offered one, like a ‘dog at a bone’! Some services can take forever to get anything done.
If you still have enough arm strength and can wheel yourself, opt for a manual chair for as long as possible as these are, again, easy to handle, can be folding and are fairly lightweight. I had a ‘go-faster’ titanium one to start with which was great. I could wheel myself around and, even, bump up and down kerbs. Very kamikaze! If you prefer to be wheeled in a manual chair ask for a lightweight one.
Once it is decided that you require a power chair take your time choosing one. There are so many chairs to choose from. Generally, the wheelchair services provide a limited range which are suitable for most situations. However, you need to do a lot of research before deciding on a chair. There are some fairly basic electric chairs available, but, again, they have limited capabilities. Many only drive on the flat and are not even capable of going over the slightest lip in a pavement, let alone mounting a kerb. Make sure that you check your requirements up against the specifications of a chair before choosing let alone purchasing one.
There are chairs which have, either, a 'kerb mounter' fitted or, if they are mid wheel drive, can, sometimes, have the capability of mounting kerbs up to about 4 inches. Some 'all-terrain' chairs will mount up to a six inch kerb. If you like cross country 'walking' then opt for an all terrain chair. They are expensive but great. I had a Fronteir X5 which was amazing. I only sold it because of my neck problems causing me not to be able to go over bumpy surfaces. There is also The Fieldmaster and others. Just search the internet for 'All terrain wheelchairs'.
If possible, a mid-wheel drive is best as it is much more manoeuvrable, particularly inside. Choosing a chair which can be used indoors and out is a good idea. If you are unable to get a mid-wheel drive, those with drive wheels at the back are, generally, ‘outdoor/indoor’ and with the drive wheels at the front, ‘indoor/outdoor’.
It is also necessary to ensure that the chair will fit into your car. If you have an adapted car make sure that it will take the chair which you choose. It may be able to be strapped in or 'locked down' with a special mechanism and bracket on the chair.Lock-down systems are easier to deal with than straps though the initial outlay is more they are worth it and they are, definitely, very safe. I have an Unwin system.
There are chairs which have, either, a 'kerb mounter' fitted or, if they are mid wheel drive, can, sometimes, have the capability of mounting kerbs up to about 4 inches. Some 'all-terrain' chairs will mount up to a six inch kerb. If you like cross country 'walking' then opt for an all terrain chair. They are expensive but great. I had a Fronteir X5 which was amazing. I only sold it because of my neck problems causing me not to be able to go over bumpy surfaces. There is also The Fieldmaster and others. Just search the internet for 'All terrain wheelchairs'.
If possible, a mid-wheel drive is best as it is much more manoeuvrable, particularly inside. Choosing a chair which can be used indoors and out is a good idea. If you are unable to get a mid-wheel drive, those with drive wheels at the back are, generally, ‘outdoor/indoor’ and with the drive wheels at the front, ‘indoor/outdoor’.
It is also necessary to ensure that the chair will fit into your car. If you have an adapted car make sure that it will take the chair which you choose. It may be able to be strapped in or 'locked down' with a special mechanism and bracket on the chair.Lock-down systems are easier to deal with than straps though the initial outlay is more they are worth it and they are, definitely, very safe. I have an Unwin system.
With MND being degenerative, be prepared for further deterioration; this means getting a chair with a ‘riser’ – this helps when trying to exit the chair as legs get weaker. They used to make the user pay for this but are beginning to realise that it is an essential requirement. A ‘tilt-in-space’ helps comfort and is usually a ‘given’ for MND patients’ chairs. If you can get them electric leg rests are handy as they allow you to lay back with your legs up for a rest.
If you require more than one chair and/or want to buy one yourself these can, also, be bought second hand for a really good price. You can use the sites above, again. If you are buying your own from e Bay or even from a company overseas make jolly sure that it is exactly what you want. I actually had six chairs at one point in time. Each had a different purpose. You can always sell them on if bought second hand. My idea was to watch an item being sold on E Bay and, if no-one was bidding, e mail the seller and say that if it didn't go I would make an offer. People selling often have an inflated idea of the worth of a second hand chair. If you pay too much when you buy you will not recoup much when and if you sell. Beware.
If you have a neck problem you will eventually need a good support for the neck and head. There are various options available. I have one made by this company:-
The headrest is quite supportive and can be moulded round the head to hold it in place.
For sufferers who have an electric chair but have got to the stage whereby they can no longer control the chair there are ‘carer operating’ systems. This attaches at the back of the chair and will override the control and allow them to drive the chair.
Generally, the wheelchair services will provide a manual chair along with the electric one in case of breakdown.
Generally, the wheelchair services will provide a manual chair along with the electric one in case of breakdown.
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