MND Association, Cornwall Branch
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Elsie's Diary - 2012




MND – Sense of Humour Essential


I have been the proud owner of a glitzy red motorised wheelchair for a month. However my doors and paintwork are now scraped and chipped. Everyone stands well clear when I am on the move. This indicates the standard of my driving skills.


I have a bar unit in the kitchen, the microwave now sits upon it. Ideal, theory I can raise my wheelchair to reach it comfortably. Ok that’s the theory, I now have my legs under the bar, so far so good. I pull back on the joy stick, up ,up, up too late joy stick catches under the bar unit. I am still rising, so is the bar unit and the supporting pole. The microwave is now at a sliding angle. Whew the wheelchair has now reached maximum height and stopped. Problem the controls are firmly pressed against the underside of the bar unit. My mobile is out of reach. I cannot text anyone (I have lost my power of speech), do I wait 3 hours for my Carer to arrive? Would they be able to free me? Time to press my Lifeline. Neighbour arrives, takes one look and advises a two man job. Few minutes later, one lifts the bar unit whilst the other pulls my very heavy chair. Miraculously the unit returns to the floor undamaged and the wheelchair still works. My two rescuers have escaped injury, although mentally scarred by the chaos they have just encountered.


Moral: Take care when going up in the world! (tee hee)


MND – When is it safe to have a pee?


I live alone, I have a Possum system to open my front door. The controls are on my wheelchair. My wheelchair can only go up to the doorway of the cloakroom. The Lightwriter is too heavy for me to take into the cloakroom (I have lost my power of speech).


I enter the cloakroom holding onto the grab rail, I have managed to get my trousers down. Dismay the doorbell rings. It is two friends, a husband and wife. Help! I cannot move quickly and do I wish them to see me with my trousers down? By now they are getting anxious, shouting through the letterbox saying ‘open the door’. How? I ask in my head. By now there is a third voice! Concerned neighbour disturbed by two people pestering me. I have now managed to shuffle using the grab rail to reach the door controls on the wheelchair. Whoosh like champagne from a bottle the three flood in. It is immediately apparent to all what I was attempting to do. Next thing I am being held firmly by a relative stranger uttering the words ‘don’t worry I used to be a District Nurse’. I was so flabbergasted that I weakly complied. Afterwards we all laughed.


Moral: Remind friends to bring their keys or remember the Keysafe code.


A New Comfy Cushion


I now have a top of the range wheelchair cushion. It moulds to my undercarriage and thighs. Cheeky. My fidgeting and aching anatomy have been banished for posterity.


All the relevant checks were made regarding getting on and off the wheelchair independently. Now I am flying solo! Off I motored to the cloakroom – my first challenge. No problem driving up to the cloakroom door as usual, I dismounted with the aid of the long grab handle strategically placed. Wonderful I congratulated myself prematurely. Now comes the time to remount my trusty motorized wheelchair. So far so good, I retraced my shuffling steps to the end of the grab rail, next is the leap of faith. I reverse onto the folded footplate, feel the edge of the new cushion and have to trust in gravity as with previous cushions hoping I will land far enough distance away from the front edge. No such luck, I am perched precariously on the edge next stop would be sitting on the floor and pressing my Lifeline for a rescue mission. Fortunately I am still holding the grab rail only option is to stand again. First I manage to turn on the wheelchair control and inch over the threshold a fraction. My family tease about my failing to let go of my grip without the scraping of nails, thank goodness I have this failing. Second attempt I land further away from the edge. Phew! I put my trust in fate and launch myself backwards swapping the grab rail for the arms of the wheelchair. Turn on the power and recline the wheelchair, my legs are in the air. Who cares what I look like? With the aid of gravity I managed to thrust myself to the back of the chair. A cat with 9 lives comes to mind. Another disaster averted!


Moral: Keep your grip when all else fails.


Hair Washing Adventures


To dispense with the palaver of getting upstairs I have my ‘posh hair do’ done downstairs by my brilliant mobile hairdresser every 5 weeks, (please be assured my trusty Carers wash my hair in between times in the bathroom!).


Originally I would dismount my champion electric wheelchair and walk with my rollator to a dining room chair strategically placed in the kitchen. Easy peasy. After colour cooked next stage was washing at the kitchen sink. I would stand gripping the edge of the stainless steel sink, like a Scotsman holding onto a £5 note! With relief I would descend back onto the dining room chair, leaving scratch marks on edge of sink. You may recall my grip is amazing, however letting go I suffer great reluctance, hence the grating sound as finger nails scrape like chalk on a blackboard.

Hair wash

In my hairdressers words

“we are better looking that those two in the pic!!”


Recently it has been necessary to remain in my wheelchair. The first time was not planned it was spur of the moment. It needed inspired thoughts to overcome teething problems. My wheelchair was stripped down to basics, whatever detaches was removed. All worked well until the need to wash off the colour potions. My hairdresser thankfully is on the same wacky wavelength as me, came up with a plan. I was decked in numerous towels and plastic capes including the controls of my wheelchair. Next is the inspired bit. I now have a large wooden carving tray clasped on my lap, an empty washing up bowl perched on top. A bucket is partially filled with clean water. The next stage is not for the faint hearted. I am now leaning over the bowl with my hair being rinsed, shampooed and conditioned, with timely periodical emptying of the now heavy bowl disaster is averted. Mission accomplished. My hair is dried and now looking splendid, my wheelchair has been reassembled and still works, my hairdresser and I are reasonably dry! Success.


Now we are prepared. My intrepid hairdresser has researched and acquired a cape which fits around my neck. The waterproof cape drapes into the sink when I tilt my wheelchair backwards. It has been previously tried and tested by my hairdresser’s courageous husband, in their brave words “my hubby assured me it was just his adams apple crushing that caused the fainting!” Brilliant sense of humour, definitely on same wavelength as myself. Completely prepared now with my purchase of a mono shower attachment. All that was left was to negotiate my wheelchair into the correct position, raise and tilt. Bearing in mind my bumped and scrapped paintwork, my hairdresser wisely kept her distance protecting both body and soul! After about 10 minutes of manoeuvring, at least an 8 point turn with a variety of ups, downs and tilts of various degrees, with wails of laughter and gasps between us both, mission
accomplished until next time!


Moral: Be brave, forward planning essential!


Lifeline Lottery!


My cloakroom is very compact, when I drive up to the entrance only the front wheels of my electronic wheelchair can be edged over the threshold. Needless to say the wood grained veneered door has taken a battering by the pesky wheels which insist upon turning making the space even smaller. Once the front wheels are in, the footplate is pulled up like a drawbridge with a fabric belt which is secured onto the right arm of my wheelchair with Velcro.


Next I pull myself in an unglamorous fashion to the edge of the cushion, grasp my grab rail which extends to the toilet, rock my feet to the floor and haul myself into a standing position. Fortunately my knees lock together involuntary. Without this knock kneed formula I would be kneeling on the floor! Now comes the clothing preparation to sit on the loo. Thanks to my locked knees my knickers and trousers cannot fall to my ankles. I have safely landed on my toilet with the aid of a moulded seat raiser which is screwed onto the sides of the pedestal. Now I need to grasp with both hands the grab rail to stand and repeat the reverse process pulling up clothing and return to my wheelchair. I have successfully been doing this for months. Yes you have guessed correctly NOT THIS TIME! After the umpteenth time I have to concede defeat. What next? My Partner is not due for 3 hours, my son is at work, I only have my Lifeline around my neck. You may recall I have lost my power of speech. Do I press my Lifeline? Who would come to my embarrassing rescue? 3 are male 1 is female, but if she was called her husband would need to lift me! Bear in mind without speech I cannot request who is called nor explain my predicament. By now after numerous attempts to stand my energy level has dropped and the moulded seat is becoming very uncomfortable. Much against my will only one option remains, I must press my Lifeline and take pot luck who they may call to rescue me. I duly press the button. We have the system like the pop song, knock once on the pipe if you want me to call, in my case it was one bang of the door against the sink. The deed is done, now it is a lottery who will come to my rescue?


I have pulled clothes around myself to maintain some dignity as best as I can. The minutes tick relentlessly by. Finally I hear a familiar male voice, it is a friend who I have known for years. Unfortunately he is going to see parts of me he has never seen before, and probably never wishes to see again. First he needs to reach over to the controls to reverse my wheelchair to gain access to the cloakroom and me. As he lifts me to the grab rail and proceeds to pull up my knickers and trousers, bless him he says I have never had the privilege to do this before. Any embarrassment between us vanishes and we are both laughing. Dignity is restored, I am safely back in my wheelchair and my good and faithful friend has become my knight in shining armour.


Moral: Take your mobile everywhere!


Top to Bottom!


It’s the hair challenge time once more. A reminder for you, I have lost my power of speech. communicating via a Lightwriter, I type the machine speaks for me. I drive or should I say crash around my home using a glitzy electronic wheelchair. It is sometimes a demolition derby, as my family, friends and builder will confirm. Everyone sensibly escapes to safe ground when I am on the move.


We have negotiated around the hair washing bit. Ignore my wheelchair attempting to raise my kitchen sink and worktop. Just fine tuning needed for next time. Tilt, raise and reverse after all, are advanced standard of wheelchair manoeuvring. Only basic tuition on wheelchair operations provided, the usual forwards and speed control given on hand over day. They and I were oblivious to the damage it could do in the reckless hands of myself!


I digress, back to my hairdressers visit…..we have reached the important styling and blow drying stage. Ding, ding, ding, my electronic door release bell announces the arrival of one of the District Nurse team, using my key safe he lets himself in. I have never set eyes or ears on this male with a booming voice in my life before. He introduces himself in high decibels, off the rictus scale.


As my heels need checking for pressure sores, he is now sitting at my feet, with my file notes spread out before him. Still shouting, assuming he thinks I have a hearing impairment, I type “I am not deaf, I can hear you.” He responds, this is how I normally speak, everyone says I shout. My hairdresser says knowingly, you must be from Birmingham everyone shouts there. We have no objections to his continuing to check my heels. Then out of the blue he shouts even louder HOW IS YOUR BOTTOM? My hairdresser and I dissolve into hysterical tears of laughter. My Lightwriter crashes to the floor. After countless attempts I manage to type NO PROBLEM. He is now bright red, my hairdresser grabs for her cough sweets in desperation to stop herself from keeling over gasping for breath, all the laughter has stirred up her cough with vengeance. Peace and calm is finally restored, everyone has recovered! My gentleman District Nurse has left, no doubt reeling from his first encounter with the batty woman on his home visits rota! You could say I have received top to toe attention today.


Moral: Multi tasking can be embarrassing!


A Shocking Confession!


After reading previous Elsie’s Diaries you will be aware how lethal my powerful wheelchair can be in my careless hands. I have the following shocking confession concerning my breakfast bar……


My breakfast bar is home for my microwave, special kettle (no risky pouring as it dispenses the appropriate amount of water by the press of a button into the two handled mug below), my tray of cold drinks etc. All in easy reach when I raise my clever wheelchair, that’s the theory.


After successfully heating my meal in the microwave what better to follow a tasty meal than a nice cappuccino, previously prepared for me, all that is required is to press the button on my kettle to dispense boiling water.


On my knees I carry a bean bag tray, it holds my mobile telephone, my remote control (Possum which releases my front door, turns on lights etc) also my Lightwriter, you will recall I have lost my power of speech. Thankfully on this occasion it was placed on the bar unit to make space for my desired cappuccino.


I have my knees under the bar unit and I am in the process of raising my wheelchair so the button on my kettle can be reached. reactions have slowed........up, up I go........too late the wheelchair control and my hand are wedged tight under the bar on the first occasion no longer within my control I continue rise until my wheelchair stops. My bar unit is now slopping to the wall, the supporting pillar is off the ground. I managed to pull my bruised hand free but my mobile telephone is trapped on my tray and cannot be reached. There is no alternative but to press my Lifeline to raise assistance. I dissolve into tears of self pity and horror of doing this for the second time. My son arrives very shocked and understandably alarmed. Due to my loss of speech I could not explain what had happened to the person at Lifeline. My poor son had no idea what state he would find me in.


My son managed to free the wheelchair control and lowered me to the lowest point which returned the bar unit to its normal height and the supporting pole back onto the floor. Miraculously no structural damage.


We can after several weeks chuckle about the misadventure but I cringe at the distress caused to my son.


Moral: Do not think history won’t repeat itself, IT DOES!