HOUSE ADAPTATION

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.

http://www.theramppeople.co.uk/wheelchair-ramps/?gclid=CJDDpP2SiKcCFQgMfAodSxKQeQ

 If you don’t mind second hand, look for these on E Bay. 

http://shop.ebay.co.uk/?_from=R40&_trksid=p3984.m570.l1311&_nkw=wheelchair+ramps&_sacat=See-All-Categories

 If you live in Surrey, Sussex or Herts there is ‘Ask Des’. A charity website 

http://www.askdes.org.uk/equipment.php

There is also Disabled Gear. A free website set up by a disabled guy.

http://www.disabledgear.com/Buy/Default.aspx?ref=C162439

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

http://www.firstclasswetrooms.co.uk/

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.

http://www.firstclasswetrooms.co.uk/shower-toilets-geberit-/-closomat/view-all-products.html

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.

http://www.firstclasswetrooms.co.uk/portable-folding-screens/portable-folding-screen-750-high-x-1000x1000mm.html

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.

http://www.terrylifts.co.uk/

http://www.wessexlifts.co.uk/

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.

CLOTHING

Any websites listed are just those that I have used; I am not,necessarily, recommending them
I try as far as possible to buy in the sales and scour the net for the best bargains, particularly those which are specifically targeted at the disabled.  Do not buy the first thing that you see; this is what makes so much money for so many companies. Be discerning!!

As time goes on and we lose the strength and dexterity in hands, arms, legs, feet, our ability to dress ourselves for as long as is humanly possible becomes more of a concern. Once we have to rely on a carer to dress us items need to be easy for them to put on us with minimal discomfort for the patient and effort for the carer. Also, many MND sufferers feel the cold, so the necessity to keep warm is there.

Women are, in the main, vainer than men. I should know; I am one!! I used to be very fashionable; I wore tight, hipster jeans, nice shoes and designer tops. I wore co-ordinating jewellery and had handbags to match. Unfortunately, those days are gone. However, whilst traversing the ‘helter-skelter’ downwards into 'patheticness' (good word, just made it up!) I have tried to adapt so as to maintain some sense of fashion/style, but this is, now, a massive struggle and warmth is my prime motivator.

UNDERWEAR

I wear knickers with string sides as these are a lot easier to pull up. I also purchase those which are a size larger than my actual size to make it even easier.
Re bras; I am lucky,(now) that I am not well endowed in the bosom department! I do not really need to wear a bra. However, so as to look a little more feminine, I like to wear one when going out. So, I purchase Sloggi bra tops which can be pulled on over the head, so, no fastenings. Even those who are well endowed can wear these bra tops or, camisole tops with an integral bra.

http://www.flowerbags.co.uk/sloggi-double-comfort-bra-top-21019-p.asp

There is no easy way to get tights on when disabled. Once the ability to do so diminishes, asking carers to help is not very useful as it is so awkward; it’s not quite like putting tights on a small girl as you can’t exactly put an adult MND patient on your lap! Even putting socks on someone else who is not capable of helping is a far from easy task. Once the tights issue raises its ugly head it may well be time to consider the leggings or trousers options.

These are aids which MAY help:-

http://www.rdkmobility.co.uk/Tights-Aid.html#

http://www.rdkmobility.co.uk/Sock-Assist-with-Loop-Handle.html

I have never used an aid to get tights, or socks on so cannot vouch for these.

MIDLAYERS

When dressing in normal skirts with zips and buttons becomes difficult, try elastic- waist clothes. There are a few sites which sell clothes for the disabled but they are mainly polyester and, not very stylish. Shops like M and S sell elastic-waist trousers and skirts. However, they if you want them to look in the slightest bit fashionable, they will only have half of the waist elasticated  and will still be a struggle to pull up. I, personally, did not find them at all useful as I could not pull them up.

 There are leggings and ‘jeggings’, which are very fashionable. If you require warm leggings there are merino wool ones. With these one does not have to deal with the feet as with tights. Typical examples are Icebreaker. They are not cheap but wear well and are lovely and warm.

http://www.natureshop.co.uk/Catalog/MerinoClothing/wool-clothing.asp

Icebreaker also do tops and vests to enhance warmth. If you scour the net you can find sites whereby these items are reasonably priced. The one above is one that I have used a lot.

If a man can no longer do buttons there are shirts with fastenings at the back or you could always get a helpful person to put velcro on under the button so as to aid getting on and off. Or, wear T shirts and jumpers.

Men will, possibly, opt for the tracksuit/jogging bottom option. One of the only good things about being a man with MND is that they can wear a ‘sheath catheter’, meaning that they do not have to, constantly, go to the toilet every time they have a drink. So, they only need worry about having their trousers pulled up on the ‘odd occasion’!

There are websites from which one can buy adapted trousers which have zips at either side of the waist (if you can still these up) or with Velcro fastenings and elastic holding the back up. There are also special trousers for wheelchair users which come higher up at the back.

http://www.able2wear.co.uk/product.php?xProd=44&xSec=94

http://www.clothingsolutions.org/

http://www.adaptawear.com/

I am at the stage whereby I am no longer able to pull my own trousers or knickers up myself. I can get them so far and then have to engage the help of my carer to get them up, fully. I have tried purchasing more flimsy trousers with elastic waists which are not as tight as the basic tracksuit bottoms or jogging bottoms. The snag with these flimsy trousers is that they are polyester and not natural fibre; therefore, sitting in a wheelchair with a ‘plastic’ cushion for 12 to 14 hours is not ‘nice’! You can imagine. I would love to wear my merino wool leggings or cotton velour tracksuit bottoms but will then have to have them totally pulled up by my carer or, since I can, just about, go to the toilet on my own still, spend hours sitting in my chair with my trousers down if my carer is out for any length of time. So, you take your pick as to what you feel is best for you.

I have looked into the option of cutting the tracksuit bottoms down from the waist and stitching/sticking Velcro fastenings on to them. You do need someone willing and able to do this for you; currently, I don’t have. If you do, try this, it could keep you independent for just that little bit longer.

http://www.sewessential.co.uk/Search.asp?SearchString=velcro&x=36&y=3

My experience is, obviously, that of a woman. However, some of these suggestions will, also, benefit a man.

There are devices available to help the disabled to do up zips and buttons.  There are variable opinions. Some people think that they are great, others cannot get on with them.

http://www.rdkmobility.co.uk/Button-Hook-/-Zipper-Pull.html

Pick clothes with minimal fastenings, such as buttons and zips. Use Velcro wherever possible. On line you can find sewing sites which will sell bulk Velcro for a reasonable sum. Get iron on Velcro. Buy jumpers and tops a size larger than normal to make them easier to get on and off. Try layering to avoid bulky clothing which will still keep the patient warm.

I wear gillets (sleeveless jackets) as they add that little bit of extra warmth. I have thin quilted gillets and sleeveless cardigans which I wear over the top of my merino wool tops indoors. I also have down gillets to wear when out if it is not too cold and I do not need a full jacket.

OUTERWEAR

 In the winter I wear a down jacket. They are quite easy to manipulate and get, useless, arms into. They are lovely and warm and can look reasonably attractive. These can be purchased very reasonably if you buy just before or after Christmas (in the sales). I have a lovely purple one (one size up from my normal to make it easy to do up and accommodate other layers). Black is the most available option. I thought about a long down coat but have to bear in mind the fact that I am permanently in a wheelchair and I would always be sitting on it, thus making it uncomfortable. Capes are quite popular and could be easy to get on; however, they can be rather bulky.
For women, a woollen poncho may be handy or a chunky cardigan as these are all the rage, currently.

For my HANDS, which are cold all year round, I wear cheap fleece gloves which I purchase from Tesco for £1 a pair. I, then, cut the finger tips off of the thumb and next two fingers to enable me to use my fingers. This has been fine till now; however, I now get such cold hands in the winter (indoors, even) that I have now taken to purchasing alpaca knitted, fingerless gloves. I buy them on E Bay for £6.99 a pair. I wear them for a couple of days and have them hand-washed as they can get food on them. They are lovely and warm. I started off with a cashmere pair but, at £30+ per pair it is a little expensive! I will stick to the fleece ones for the summer. Do not buy gloves with labels on as these tend to have wrists that are quite tight and difficult to get on when finger strength decreases.
Examples of e Bay gloves:-

http://cgi.ebay.co.uk/Fair-Trade-luxury-alpaca-wool-gloves-fingerless-full-/220734749404?pt=Women_s_Accessories_UK&var=&hash=item7914365240

http://cgi.ebay.co.uk/ALPACA-GLOVES-FINGERLESS-UNISEX-WOOL-HAND-MADE-M-L-BN-/220711728886?pt=Women_s_Accessories_UK&var=&hash=item7913efd93f

http://cgi.ebay.co.uk/UNISEX-ALPACA-WOOL-FINGERLESS-GLOVES-VERY-WARM-/130476390822?pt=Women_s_Accessories_UK&hash=item1e60ffb9a6

I also possess a pair of sheepskin mittens which I can still, just about, get on. I leave my alpaca gloves on underneath.  I also have a sheepskin muff for my hands. My husband has cut the elastic cuff off of each end to enable me to get my hands in. I tend to wear one mitten on my right hand so that I can control my power chair and not get a cold hand and have the left one in the muff.

http://www.glanmor.co.uk/cart.php?target=product&product_id=16259&category_id=276

FEET

Gradually, as your feet become more useless and swollen, you will not be able to wear ‘normal’ shoes. If your feet tend to swell you will need adjustable straps or laces to allow for the swelling during the day. Try, as far as possible, to buy ‘normal’ shoes. Once you enter the realms of ‘disability’ the choice is limited and they can be more expensive; partly due to numbers purchased.
I graduated to ‘Ugg’ boots which kept my feet from becoming completely icy (you have probably guessed by now that I have a particularly bad problem with circulation and my hands and feet get extremely cold). Now that I am unable to ‘help’ the carer put my boots on I have started wearing sheepskin velcro fastening slippers with cashmere socks. Available, online.

http://www.lambland.co.uk/shop/ladies-velcro-sheepskin-ankle-boot-shepherd-p-996.html

http://www.elmhouseproducts.co.uk/acatalog/Velcro_Fastening_Sheepskin_Slippers.html

LEGS

To make sure that you keep warm and dry when in the wheelchair there are leg ‘cozies’. These can be ultra warm ones or just waterproof ones to keep you dry. There are various sites with them on

http://shop.ebay.co.uk/items/__wheelchair+cosy_W0QQ_dmdZ2?rvr_id=208513577052&crlp=1166648797_284591_284611&UA=%3F*F%3F&GUID=0f95101512a0a0e20227cd47fdf888cb&agid=283428817&tm_kw=wheelchair+cosy&siteid=3&MT_ID=10&tt_encode=raw&keyword=wheelchair+cosy&geo_id=21&ff4=284591_284611

http://www.amazon.co.uk/s/?ie=UTF8&keywords=wheelchair+cosy&tag=googhydr-21&index=aps&hvadid=7302317945&ref=pd_sl_4sk7q7rmf4_b

http://www.benefitsnowshop.co.uk/products/Wheelchair/Wheelchair_Clothing.htm

http://abcmobility.co.uk/waterproof-fleece-lined-cozy-toes-%28ABC0031%29.html

However, once you are unable to move very much they are difficult to get in and out of. You could then use a rug. I have a lambswool rug which is light and warm.

http://www.glanmor.co.uk/cart.php?target=category&category_id=373

http://www.ewm.co.uk/Ladieswear/2012425/Product

http://www.woolblanketonline.co.uk/Antique-Buchanan-Lambswool-Blanket_APQ1T.aspx

NIGHTCLOTHES

If your feet get cold in bed there are various options. I started out wearing cashmere socks but, now that I can no longer take my own socks off, it’s quite uncomfortable when my feet, eventually, get hot in the middle of the night. I have now taken to wearing silk socks; they keep my feet warmer but not too hot. Almost, ideal.

http://www.charlotteandco.co.uk/accessories/slippers-socks-tights/silk-socks

With regards to actual night attire, I, currently, wear a short sleeved, cotton, nightie. It doesn’t get tangled up round my legs or arms and is fairly easy for Leonard, my husband and carer, to get on me. I used to wear cotton pyjamas with fairly loose fitting trousers to enable me to go to the loo on my own in the middle of the night. Then, when I could not pull them up on my own I graduated to the nightie. However, I can no longer get out of bed on my own and so do not drink anything after 9.00 pm so as not to require ‘toileting’ during the night; so, I could go back to pyjamas except that they are difficult for a carer to get on the patient.

If you prefer cotton nighties you may find that very few shops sell them. I found some really cheaply in Sainsburys.

Men can always find cotton pyjamas. If you are unable to do buttons wear ’T’ shirts and separate trousers. TK Maxx do these. If your legs get tangled in the trousers, wear shorties; also available in TK Maxx.

Remember, you can STILL look stylish; it just takes a little imagination!!

NAPKINS
 

To keep your clothes as clean as possible whilst eating, or, even to stop dribble from getting all over you, there are adult bibs available to buy. There are also stick on disposable bibs.

 http://www.incontinencechoice.co.uk/product/box-of-50-napkleen-disposal-stick-on-napkins-NAPORIG.html

However, I have just found a cheap device which allows your carer to put an ordinary napkin on you. I have used it and  I like it. I bought one each for my men MND friends!

 http://www.clevertogs.com/#/nipper-napkin-gripper/4540465911

MOBILITY- WALKING STICKS, ROLLATORS, SCOOTERS AND WHEELCHAIRS....

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.

http://shop.ebay.co.uk/i.html?_nkw=mobility+walkers&_sacat=0&_dmpt=UK_Health_Beauty_Mobility_Disability_Medical_ET&_odkw=rollators&_osacat=0&_trksid=p3286.c0.m270.l1313

http://www.preloved.co.uk/index.cfm?utm_medium=cpc&utm_source=overture&utm_campaign=SellingFreeAds&utm_content=SellTestimony1&cs=38e44b4d

http://disabledgear.com/

http://www.askdes.org.uk/equipment.php

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.

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.

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:-

http://www.matrixseating.com/ophead5_new.php

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.

TRANSPORT- CARS

Whatever type of MND you are diagnosed with you will probably still need some form of car (whether the driver or are driven) to get you around. When you are no longer able to drive a 'normal' car take your time with deciding what route to go down.  I have made two massive mistakes, not necessarily with the type of car but the companies I chose to provide the cars; the latest of which has gone into administration leaving many customers in the lurch and with many legal issues. (bút more of  that later).

Some people may feel it necessary to go and buy a sports car for one final fling whilst they can still drive. Remember though, when you buy and sell cars there is a great deal of money which goes to the dealer. Can you afford it? Is it really worth the expense for a few months? If the answer is, 'Yes', then, enjoy.

You have to inform the DVLA of your condition. They may contact you doctor to check your capability to drive.

If you think that you can make use of an automatic car for a while then, it is a good idea to purchase one, particularly if your weakness is manifesting itself more in the legs than arms; you can then have, fitted, a hand control enabling you to drive for longer. There are various makes available and they all vary in price. Ensure that you try them out before buying - perhaps go to a 'Road Show' or 'Naidex'to ensure that you will be able to get on with it and that type of hand control is suitable for you. When you get it fitted ensure that the fitter gives you a lesson, however short, as I was just sent on my way and it is SCARY!

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Yourvehicleandlicence/DG_10028001


http://uk.search.yahoo.com/search?fr=mcafee&p=hand+controls

If you are in a wheelchair and still want to drive there are various options available; you can get a car whereby you can transfer from your wheelchair to drive or you can drive in your wheelchair. There are numerous adaptations which can be added to the car to help you to drive. Again, make sure that you test drive any adaptations which you are considering to ensure that you can get on with them. There are power assisted steering wheels as well as the hand controls and push button drive and hand break. However, the downside of all these adaptations is that, even with an auxiliary battery, you will need to drive the car at least every couple of days for a fair distance or be willing to manually charge the battery. I found this out to my cost. Dealers will not tell you this. Again, go to a mobility show to check out all options.

There is an option of driving the car from the driver's seat and having a hoist to get your wheelchair into the car but this is really only suitable to those who can still walk a little with sticks. Or, you can have a car whereby you drive in in your wheelchair and transfer to a seat within the car; you can get rotating, sliding seats but they add about £2,500 to the cost.

If you have to be driven around by a carer and you are happy to travel in the back of the car there are many inexpensive options available. However, there are also adaptations whereby you can travel in the passenger side of the car upfront. Unfortunately, a very innovative company which adapted the Kia Sedona and was about to do the same in a cheaper version in a Fiat has gone into administration but there may be others in the pipeline, hopefully.

If you live in or near London there is a foundation which can advise and assess you re mobility, both for wheelchairs and cars.

http://www.qef.org.uk/our-services/mobility-services/

REMEMBER, ALWAYS CHECK EVERYTHING OUT, ASK FELLOW SUFFERERS, CONTACT THE MNDA, DON'T RELY ON THE COMPANY TO ADVISE YOU  AS THEY MAY NOT ALWAYS HAVE YOUR BEST INTERESTS AT HEART.

Whatever you do, remember that you can purchase a car through the government 'MOTABILITY' scheme if you do not have the funds to buy a car. This scheme requires a deposit for some cars depending on cost and will then take a proportion of the mobility component of your DLA. Make sure that you read all the smallprint to ensure that this is really what you want to do.

You are exempt from paying Road Fund Tax if you are disabled and from the Congestion Charge. If you cross the Dartford Crossing or tunnel then you can claim exemption but must complete a form for all of these.

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Bluebadgescheme/DG_4001061

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Yourvehicleandlicence/DG_10028003

http://www.dart-tag.co.uk/nossl/index.php?page=exemptscheme


If you have an adapted car normal insuranance companies prefer not to insure you. There are insurance companies which specialise in insurance for the disabled. These will often give you a much better deal especially if the car is adapted. Their customer service is good too.
I used the one below:-

http://www.fishinsurance.co.uk/

YOU ARE DIAGNOSED. DEVASTATING. WHAT NEXT?

All of this information must be checked by yourself. It is only my experience and NOT my recommendation


The 'what next' all depends on what type of MND you have been diagnosed with. If it is full blown ALS which is rapidly progressing you need to be able to sort out help as soon as possible.

If you are not in receipt of benefits then make sure that you apply now. You should be receiving Disability Living Allowance which is not means tested and has no link to salary or any other benefit; nor is it taxed nor should it be put down on a tax return as an income. Make sure that, on diagnosis, you are receiving the Higher Level for both the Mobility component and the Disability component.

The main site link is here; you can then go to your own local authority through this web page.

http://www.direct.gov.uk/en/index.htm

BLUE BADGE - available by applying through your local authority; however, it is easy to claim this if you are already in receipt of DLA (Disability Living Allowance).   If you receive the Higher Rate of Mobility, which you should be, you can automatically get a Blue Badge which is free apart from the cost of passport photos and a stamp.

If you have to have a bathroom with adaptations or other building work for the disabled person you can ask for a reduction in your Council Tax to the next council tax band down. Look on the gov.uk site again.

If you have to give up work you can apply for ESA (Employment support Allowance) which can be up to about £90 but  is subject to tax and will be reduced to about £60 if you are in receipt of a private pension. The Job Centre Plus will send you a form to fill in and may even ask you to go to the centre for an interview (I know, you might think it ridiculous, I had to go) but they can then put you into a 'Support Group' which entitles you to extra money. I started off with £30 but now receive £60 'ish.

If you do have a private pension you can ask for an 'Enhanced Annuity' which means that, valid for a period (mine is for five years), your pension will be greatly increased to take into account the fact that you have a reduced lifespan. Check this out with your pension provider.

Do you have Critical Illness Cover? This will come into play and you will get some income and/or lump sum.

If you are unsure about what you are entitled to check with your local hospice welfare department (no, they are not only for those people at the end of their life and can be extremely helpful and empathetic in many ways)  Go to 'Google' and type in hospice and your area; it will come up with one. Or, you can get referred through your GP.

You will also be entitled to free prescriptions. Ask your GP for a form to complete.

There are Carers Assessments which can be done to see if you qualify for extra benefits.