MND Association, Cornwall Branch
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Elsie's Diary - 2015




Be Prepared


Once again it is Charlestown Regatta, the sun is shining it’s off to support St Austell Water Polo Club matches in the harbour. You may recall Elsie’s Pebble Power 2014.


My partner and I are prepared for battle against those deep loose pebbles on the harbour wall, in which my heavy wheelchair sank last year, needing the assistance of several strong men to set me free. As we approached the danger zone, my partner produced with a flourish a rolled up piece of carpet and an old bath towel. Similar to Queen Elizabeth I, instead of Sir Walter Raleigh’s cloak covering a puddle, a magic carpet is placed on the offending pebbles with the addition of an old bath towel. I regally trundled my motorized wheelchair across the carpet almost to the end of the towel. To gasps from approving on lookers, the action is repeated until my wheelchair is on terra firma.


Mission accomplished. The rolled up carpet becomes a comfy seat for my heroic partner, whilst he munches a well deserved ice cream and watches the afternoon’s entertaining water activities.


Moral: Learn from past experiences and beat them!


Hospital Bed Saga


This trail of events started last November 2014 when I mentioned my difficulty of bending my knees and stretching forward with assistance from my Carers to use my stand aid to transfer from bed to commode which is then used as a wheelchair to transport me to the bathroom. My forward thinking Physiotherapist, Occupational Therapist, District Nurse and my Care Provider had a meeting with me in my home. You will know from my wet room adventures, installed by my clever builder, who you may not know, also prepared my current conservatory dining room to become my bedroom, by adding an insulated ceiling. It is a cavity block built construction with windows facing the secluded back garden, when it becomes necessary I will move downstairs.


Despite this forward planning it came as a great shock when my Occupational Therapist suggested a hospital bed downstairs and a mobile hoist. I felt it was too soon for such a drastic move. Shamefully through tears, I managed to convey perhaps after Christmas and New Year. The meeting ended with my agreeing to the order of a mobile hoist and hospital bed to use upstairs for the time being.


The hoist arrived, it is only to be used in an emergency if my stubborn knees refuse to bend. A few weeks later the hospital bed was delivered and assembled in my bedroom upstairs. One of my matching electrical twin beds has already been moved by my son to the empty spare back bedroom. The original spare 4ft bed having been speedily given to a charity that kindly collected it.


Those of you who have read Elsie’s mini breaks away, will know I sleep in a V shape with my legs raised. Would you believe it, this hospital bed only raises my legs a few inches. With some trepidation I say good night to my carers. By 11pm I am forced to text my son and Care Provider about my plight of being too uncomfortable to sleep. My son arrives first, we try a variety of pillows to no avail, we have just decided the only solution would be to transfer me into my own bed. Just at that moment my Care Provider arrives with her daughter. Thankfully she is a night owl. Hastily the bedding is transferred from the twin bed, now residing in the spare back bedroom and my bedside table is moved to create enough space for my stand aid to enable my transfer. What a palaver…….Eventually I am tucked comfortably in my own electrical bed with my legs raised perfectly. It is now past midnight, my son and Carers say a relieved good night.


My Carers all agree the hospital bed is totally unsuitable. The District Nurse visits to discuss a different profile hospital bed, she makes a note of a web link I have researched to identify more suitable hospital style profile beds. She kindly requests the offending hospital bed to be collected as soon as possible. Meanwhile my Carers regularly have to move the offending bed to gain access to my built in wardrobes.


For the next 4 weeks, every Friday evening my partner drags the uncomfortable hospital mattress to the spare back bedroom to swap for the more comfy twin bed mattress. The hospital bed with the swapped mattress is now made with sheet, pillow and duvet. Each Monday morning at 7am, everything is returned to the back bedroom with mattresses swapped over yet again, causing lots of huffs, puffs and sighs. Will this hospital bed ever be collected? After this activity my partner makes the hour long traffic filled journey home to Hayle.


Finally the offending hospital bed was collected. My bedroom is returned to twin bedded normality. Phew all straight and tidy again. In February when my Occupational Therapist made enquiries with the depot about the replacement profile bed, she was informed that for some reason the order was cancelled. It now rests with the District Nurse to reinstate the order. One could say watch this space………


My Care Provider’s ‘moving and handling’ assessor made one of her regular visits to my home this month (February 2015). She watched my Carers and me as each maneuver was carried out. All movements comply with not exposing me or my Carers, to any unnecessary risks of injury. I can remain upstairs, the next review being in 6 months, unless my condition deteriorates. Please be assured I would never place my Carers at risk. I will take the correct actions when necessary.


Moral: Occasionally saying ‘NOT YET’ is correct!


My Posh New Work Station


You will recall my laptop rested on a swiveling table, the base of which was anchored down by my weighty reclining arm chair. (Elsie’s Diary 2013 - Laptop escapades). Due to the need to move my dining room table into the lounge, when the dining room becomes my bedroom, it was time for our thinking caps to be used.


My son came up with a brilliant suggestion, having my laptop on a deep shelf with my printer slightly lower. My partner was enlisted with the task of measuring my dining table, the worktop space I needed and my printer. He even took into account enough space for my curtains to hang correctly! Accuracy is his forte!


Enter my very clever builder…………


Ellsie's Desk
Elsie's Desk 2


At his request I remained in the room. My existing swivel table was dismantled, laptop, printer etc were placed a safe distance away. The floor was covered in a protective polythene sheet, we are nearly ready to start. Crucial measurements of my wheelchair height with my hand on top of the steering mechanism are taken before drilling commences. This will ensure I can drive under without my hand being trapped! The dust is incredible, who would believe just drilling screw holes capable of creating a haze of dust. After copious testing of wheelchair heights first against brackets then prior to securing the worktop, it is ready. The same meticulous care is taken for the printer shelf.


My builder conscientiously tidies even vacuuming the carpet and to my amazement using the vacuum to dust! My crochet doily on the fireplace disappears in a slurp like magic never to be seen again! Both of us dissolve into tears of laughter. Not to worry, a very small price to pay for a literally made to measure work station.


Moral: What is a bit of dust and a missing doily between friends!


A Tight Fit



Body Warmer/

I needed a replacement body warmer, some call them a gilet, as wheelchair users with limited upper body movement you will be aware, putting on jackets can be difficult.


Sensibly, I thought by ordering a larger size would eliminate difficulties, little did I know the problems my carers and myself would experience! I am a size 8, but ordering 2 sizes larger, a size 12 I smugly thought problem solved……how wrong could I be?


When it arrived, with glee my carers unpacked for me, they like myself love new clothes. We decided I should try it on immediately. I was wearing a chunky cardigan, thinking as the garment was 2 sizes larger than usual it should fit easily. Well it went on easily enough, a little snug, but ok. Time to take it off……… our problems start.


The lining of the body warmer has stuck like glue to my woolen cardigan, it won’t come off! It is tugged down off my shoulders, my arms are pinned down like being in a straight jacket. It won’t budge. Various suggestions are discussed and dismissed, finally using my stand aid placed in front of my wheelchair, I manage to stand, keeping my wheelchair behind if the essential forceful tugging and pulling causes me to topple backwards I will fall safely onto my wheelchair seat. After many forceful pulls it gradually eases down off my shoulders towards my upper arms. Now I am encouraged to take one hand off, leaving me holding on perilously with just one hand on the stand aid, one carer steadies me, the other pulls with all her might on my dangling arm. Finally one arm is out. Freedom is within our grasp. Eventually I am free of the body warmer! It is repacked, documents completed for its return. My carers after their efforts feel no further aerobic exercise needed, they have had their work out for today!


I eventually found a replacement size 16, 4 times larger!


Moral: Think BIGGER!


Disaster Days


Some days are destined not to be the way we wish them to be. Thursday 25th June was one of those days for me.


You will recall I have a breakfast bar in my kitchen, also a wheelchair which has a raise facility. When raising my wheelchair to place my empty mug on the breakfast bar, to exchange for my dessert bowl of yogurt, YES YET AGAIN my reactions are too slow. I am pinned with my lap tray firmly wedged under the breakfast bar which my powerful wheelchair has raised to a dramatic angle which forces my kettle and breakfast items to slide to the supporting wall. The chrome support pole is suspended in mid air. My wheelchair control, lightwriter (used for speech) and mobile telephone are all trapped under the breakfast bar. The weight and pressure on my thighs is only just bearable. My only option for assistance and escape is to scrabble for my lifeline under my jumper. Eventually I managed to pull out the cord that is attached to my lifeline and press the button. Bear in mind I have no means to talk, I cannot suggest which person to contact, my son is at work, the second is recovering from a heart attack, so the third person would be best, but I cannot speak, only make distressed noises to confirm assistance needed.


To my dismay it is my good friend recovering from a heart attack. Without consideration for himself, he dragged my very heavy wheelchair free. I fearfully ask if he is ok? This triggers sobs of relief to be free and horror of the stress I have caused him. He promises he has not suffered any harm and explains he must dash away as he has a heart check up appointment within the hour. He thoughtfully rings my care provider requesting someone pops in to check I am really ok. Later my partner rings him to make sure I have caused no lasting damage and reassures me that all is well.


During the afternoon I bump the door frame as I enter my lounge causing my Possum door control to fall off from its wheelchair mount. Typical, it lands face down at the foot of the stairs, rendering my remote control on my lap tray useless. Not expecting any visitors, I relax watching a programme I had recorded. YES a friend makes an unexpected visit. With the entrance bell ringing in our ears, I try unsuccessfully to reach the door handle to open the door. Eventually using my lightwriter I manage to give her my key safe number to release the door key. This information is given through the opened letterbox. Success she manages to get in after first bumping my wheelchair as the door opens. My friend restores the Possum control to my wheelchair stand. Normality returns, well as much as it can in my home.


I gratefully welcome my carers at bedtime, they agree after such an eventful day I must be relieved to be safely in bed. After my usual telephone chat with my partner using my lightwriter, we say goodnight. What more can happen?


I prepare to settle for the night by sliding my lightwriter to the space between myself and the grab rail attached to my bed. It slides a little too far forward but should be ok. The telephone handset is placed alongside. When I try to shuffle myself into a more comfortable position, THUD my lightwriter disappears onto the floor…………typical!


My pillow changes into an unforgiving rock, my mattress into ridges of unrelenting wood. I am reminded of the title of the Kindle book purchased and downloaded earlier that morning, Scream Alone. It summed up my uncomfortable night.


Moral: Nightmare days and nights do end and you survive!


Shake Rock & Roll


Regular followers of Elsie’s Diary will recall numerous incidents of breakfast bar raising occurrences commencing with ‘MND – Sense of Humour Essential’ back in 2012.


In desperation my son moved the chrome supporting pole (now ripped off the securing screws again!) to the side. Theory being I will not raise or hit it again with my wheelchair!


Because it is off centre, each time my adjacent automatic washing machine spins, the items on the breakfast bar vibrate eg tray holding my drinks. On this particular occasion my washing machine had a very full load. My porcelain dessert bowl of yogurt with chopped prunes was prepared for me and placed on the worktop. The shot glass holding my three pills, a mug half filled with chocolate milk to mix with a small screw topped supplement bottle and a beaker of thickened Robinsons were waiting for my consumption on the tray. The scene is set………


I sat in my wheelchair relaxing with a reviving cappuccino when peace was shattered by an earth quaking thundering spin of my washing in the machine. Violent vibrations caused the chocolate milk to splash over even though just half filled, the Robinsons beaker took on a life of its own rocking on the tray knocking the shot glass of pills over, leaving it spinning aimlessly sending pills shooting out in all directions. Worse still the bowl of yogurt and prunes were vibrating dangerously to the worktop edge. Time stood ominously still. In slow motion I moved my wheelchair towards the now tottering dessert bowl. Too late it lands miraculously the right way up BUT splashes yogurt and chopped prunes everywhere. The bowl is precariously perched on my wheelchair control, I dare not move!


Only option is to text my care provider’s ‘on call number’ requesting if anyone in my area, could they pop in to rescue me please. Within 10 minutes 2 carers arrive. With great hilarity I am rescued, carpet washed, pills collected and wheelchair control restored to sparkling clean and working order. Marvelous ladies! They even made me another cappuccino, wonderful and thoughtful carers. I am so very lucky to have such an excellent care provider, all with a keen sense of humor.


Moral: Don’t over full your washing machine!