MND Association, Cornwall Branch
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Elsie's Diary - 2013




New Years Day 2013 – Golden Gift Days


The sun was shinning such a rare occurrence after so much recent rain. I volunteered to visit Charlestown in my motorised wheelchair. Exercise for my partner, who loves walking and an opportunity to be out together. We got as far as the street below my home, the heavens opened with first sooner had my companion uttered hail will brush off, it changed to lashing rain. My champion shielded me from the worst with his trusty umbrella. The deluge soon ended. I was reasonably dry but my Partner's trousers were soaked. I persuaded him to return home to change whilst I trundled onwards. You can imagine, no Lightwriter on my lap (difficult to hold and steer), after bumping up a kerb, had to stop whilst I adjusted my position in my wheelchair. A thoughtful man asked if I was ok, all I could do was a thumbs up sign as I trundled on! My Partner caught me up a mile from home.


When we reached Charlestown it was only natural to go into The Rashleigh Inn, not like normal people for alcoholic beverages but hot chocolate for me and a pot of tea for my Partner. My luxury hot chocolate was the best ever, absolutely delicious. It was so relaxed and pleasant my Partner suggested bangers and mash with lots of tasty gravy, which we both thoroughly enjoyed. After visiting the harbour and viewing the sea, more magical moments shared. It was time to set off home. By this time my arms were loosing strength pushing the joy stick forward uphill. My Partner resolved the problem by walking alongside to take control of my wheelchair. At least we could be side by side, much safer for him having taken control; anyone that is familiar with my hap hazard driving gives me a wide berth! Whilst in Charlestown my wheelchair battery indicated only one out of three green lights had been used. By the time we reached just over a mile from home, the display without warning dropped straight to two flashing red lights! Too many hills! We crawled to a house where my Partner and I know a couple well. I am now parked on their front path whilst my Partner knocks their front door.


No one home, I sent my Partner two houses up to another friend, also out. Just about to send him to another friend’s house, then miraculously my wheelchair lights are now on amber. We set off again, draining the battery as uphill. We turned into a road nearer home, now creeping forward. We both know my wheelchair won't reach home without a boost of charge. My Hero sensibly decides to get his car, collecting wheelchair charger and extension lead, as it is now getting dark and cold. Whilst he is away, I proceed at a snails pace along the pavement until down to one flashing light. Unknown by me my Partner on his walk back sees a lady who lives at the end of the road where I have broken down. He only met this lady once previously when walking with a mutual friend, who seems to know everyone. Fortuitist meeting, the lady recalled being introduced to my Partner and was happy to assist. My Hero on his return got me safely into his car, left me in the warm and maneuvered my flagging wheelchair into her garage. The wheelchair was left on charge whilst we drove home. We soon warmed up with a cuppa and some food. My Partner returned to collect the wheelchair, offering a bottle of wine as a thank you. It was happily accepted in exchange for electricity supplied.


Despite our misadventure, it remains a golden day, unplanned, unexpected and one of our special happy laughter filled memories. Guess next time will take the wheelchair charger with us!!!


Moral: Don’t venture too far without your charger in an electric wheelchair!


Goggle Eyed


My son and daughter as a special treat took me for lunch at a beach restaurant we have visited many times.


My trusty pair lifted me down the 3 fairly deep steps to the dining area in my manual wheelchair. Positioning me for ease at the end of our designated rectangular table. This decision saves battling with table legs. Tables for wheelchair users are usually either too high or too low. I have learnt from experience to use a small beanbag laptray, saves feeling like a midget or a giant, depending upon the tables height. There is a rectangular table behind me, but plenty of room for waitresses and other diners.


We have a relaxed and laughter filled lunch. When eating it is necessary to concentrate, hand eye coordination essential. I am aware of diners arriving, but not really looking at them. We continue to chat with the aid of my Lightwriter, you will recall I have lost my power of speech. After a delicious meal it is time to leave.


Whilst holding tightly to my Lightwriter, I am now turned to face the diners sitting behind me. I catch a glimpse of a male celebrity notoriously famous for presenting a well known morning show on ITV with his wife. We are now proceeding up the 3 steps. I have an elevated view. YES it is a celebrity! My thoughts were written all over my face. I am literally speechless. In my head I am saying IT’S RICHARD! With that he looks me straight in the eyes and waves!!!! Well I am flabbergasted. My daughter said my eyes were like saucers, so wide open. We gave him the courtesy of continuing with our exit. Collapsing in laughter at my reactions when safely outside. I cannot stop chuckling, even now the memory tickles me.


Moral: be prepared for surprises!


Laptop escapades – part 1


My laptop computer and filing rack sits upon a cleverly designed swivel table. It is anchored into position by my rise and recline sitting room chair. Back in the days when I could walk with the aid of a rollator, I could maneuver myself to sit in my chair and pull my swivel table towards me, perfect. As MND has progressed my brilliant swivel table still anchored by my chair, is positioned parallel to the wall enabling me to drive my electric wheelchair underneath. My printer is placed under my table on a low wheeled stand. For convenience an extension block is secured to the table, for ease of using electric power to top up my laptop and occasionally my Lightwriter.


Elsie's Chair
Elsie's Table


As you know my driving skills are dubious, coupled with being plugged in occasionally to charge my Lightwriter using the extension block secured to my table, my Lightwriter always sits on my lap, so I am attached via a cable to my swivel table! The scene is set for what happened next…….


I am happily working on my laptop when my lovely cleaning lady pops in with a question. Naturally I turn my wheelchair to face her……….time stands still! I have forgotten I am plugged in! The shock is written on her face as my table also swivels, the cable of my Lightwriter hooks under my laptop which pulls it dangerously close to the edge. Disaster is averted by her swift action to stop it crashing to the floor. By this time the cable is stretched to its maximum length, springs out of my Lightwriter socket releasing me to turn to witness the chaos I have caused. The poor lady has palpitations caused by shock as we both dissolve into hysterical laughter. Brave lady, she still comes back each week not knowing what to expect next!


Moral: don’t forget to unplug!


Laptop escapades – part 2


As you can imagine I have become an accident waiting to happen ………………….my shins are always sporting bruises from bumping into the printer table, purple is the new black as they say in the fashion world!


My last collision involved my Asda delivery man. It all started by my reactions not being as sharp as needed. I drove my wheelchair under my swivel table as usual BUT this time did not stop quickly enough! Ramming my shins against my printer table, plus swiveling the table firmly against the wall, causing a domino effect. Knocking various items squiffy, even my treasured photograph of my daughter and son-in-law did a somersault onto the hearth. Leaving my laptop precariously perched on the edge of my table. I managed to reverse out, even the top of my wheelchair joystick had come off and was lying on the floor. As I surveyed the wreckage and wondered where to start the doorbell rang.


After letting the Asda delivery man in via my remote control Possum door release, I hastily typed a rescue message on my Lightwriter to him. He disappeared into the kitchen with my groceries. I did wonder if he would ignore my plea for help. Thankfully he returned and was transformed into my hero. He straightened my swivel table, sorted my filing baskets, placed my laptop securely on my table and retrieved my miraculously unbroken wedding photograph. Order was finally restored with the top of my wheelchair joystick firmly replaced. I managed to type a grateful thank you message, before he left kindly asking whether there was anything else he could help me with?


Another traumatized visitor who may never wish to deliver to me again!


Moral: Heroes come in shapes and sizes!


What’s cooking?


As you all know I am the proud owner of a glitzy red wheelchair that can do amazing things like raising me high enough to almost change a light bulb and recline sufficiently to enable me to shuffle back in my seat, very useful when returning to my wheelchair.


In the past, in an effort to help my Carers, I regularly raised my wheelchair to reach the kitchen sink to soak mugs etc. To achieve this I positioned my wheelchair pararel to the sink, making it possible in my elevated position to move backwards and forwards to lower mugs plates etc into the sink. Then I would lean precariously to the side of my wheelchair, hanging tightly to a wheelchair arm with one hand, reaching for the font to manoeuvre it directly over the first mug. Next was the stretch to the old fashioned hot tap, twisting with my fingers to turn it on. Mission accomplished I would lower my wheelchair and manoeuvre away. One could suggest it was my method of hand and arm exercise, although my physiotherapist may have shuddered if she could have seen my antics!


On one occasion as the wheelchair lowered the mechanism caught in the handle of the cupboard door under the sink ripping it off its hinges! I managed to free myself propping the door upright on the floor against my now open plan cupboard. My marvellous builder although dismayed when he examined the damage managed to re-hang the door leaving no trace of my attempted demolition. My washing machine and tumble drier sport blue scratches and dents incurred by my wheelchair. The once smart cupboards have etched design features acquired when turning my wheelchair.


Last year after lowering my wheelchair after soaking dishes in my usual precarious fashion I proceeded to turn my wheelchair to exit the kitchen. Time stood still, I heard an ominous CRACK! Then a silence, with fear and dread waited in the silence which surrounded me. The sound of disintegrating glass filled the void! I knew instantly without a backwards glance exactly what I would find. My main oven door was strewn in literally thousands of shattered pieces onto the floor. No miraculous cure this time……….replacement cooker needed, spare parts were no longer available. Typical only a few weeks earlier, my cooker had been professionally cleaned and sparkled like new……


Moral: Look before you turn!