Last week was quite eventful but can be summed up in three main categories, all rooted in the inexorable march forward of this unfortunate, not to say unfair, condition.
Firstly, Carers. Just the process of getting up, showered and ready for the day becomes a time consuming activity when on can do little or nothing for one's self. Monica soldiered on for as long as she could but it was getting too much so we decided to call in the carers. It was all arranged smoothly and two pleasant, professional women arrived on Wednesday morning to take care of all my requirements. My apprehension was unfounded and after only a few days I'm completely at ease with their presence and care.
Secondly, Convene. Coping with toileting becomes tricky as use of the hands declines. Having discussed this with the hospice they arranged for the District Nurse to visit me so that I could be fitted with this device to make life easier. I was not familiar with the appliance so it occurs to me that you may not have come across it either? I will refrain from inelegant detail, but some description is needed. Basically it consists of a condom-like flexible sheath (lined with SuperGlue, and replaced daily!) which connects to a bag strapped to the leg, all discretely worn under the clothes. It's quite a good system as long as everything is done properly. On Saturday morning the carer neglected to close the drainage tap on the bag, which led to a bit of a problem later in the day!
Lastly, Carbohydrates. My dietician visited on Friday to check my weight. On finding I've lost about 3kg since last month she recommended the diet that I've craved for years: loads of full-fat foods! Full fat milk, lard sandwiches, full-fat butter, full-fat cheese, matiere gras, oh joy! Naturally most of this will be assimilated by my uninvited and unwelcome body passenger, depriving me of appearing on some Channel 4 expose of British lardiness.
In other news: my bed was delivered this week so I'm now sleeping in an infinitely adjustable bed which is very comfortable, I've persevered with the Nippy and can now sleep with it on all night to improve my breathing, I've pretty much lost the ability to speak and started to use an app on the i-pad which speaks what I type.
So, there we go; bit by bit, I'm less and less!
Sunday, 30 September 2012
Friday, 14 September 2012
Friday
Waiting. I'm getting used to this being a regular feature of my existence now. I suppose it's a function of being able to do less for, and by, one's self. Today, we're waiting for the people from the 'emergency call' service to arrive. Last week we spoke with a visitor from the local MNDA who suggested that we consider invoking this service as it would provide some peace of mind. If I got into difficulty when home alone I would simply press a button and contact would be made with someone who could come to my aid. Simple, in the words of the meerkat!
Otherwise I wait for professionals providing therapy or treatment, visitors to arrive, something to be moved within reach, Godot etc. We are aiming to try to have one day each week when nothing is arranged, so we can just take the day as it comes without waiting or preparing for any events at all. The chance to chill!
Now I'm going to get on with waiting for the weekend.
Otherwise I wait for professionals providing therapy or treatment, visitors to arrive, something to be moved within reach, Godot etc. We are aiming to try to have one day each week when nothing is arranged, so we can just take the day as it comes without waiting or preparing for any events at all. The chance to chill!
Now I'm going to get on with waiting for the weekend.
Wednesday, 12 September 2012
Catch Up
It's September 12th. It sounds a bit lame but the days have been so full since my last post I've either been too busy or too tired to put stylus to keyboard on the i-pad and fulfil my commitment to blogging 'every day'!
We spent a great week on holiday with the family in Worcestershire. The cottage was comfortable with adaptations well suited to my needs. The single beds in the ground floor bedroom weren't too clever, though, so after a couple of nights Ross, Mary and Caroline carried me upstairs on a dining chair to a very comfortable bed! We entertained visitors as there was room to have friends to stay over, so Viv (used to be a neighbour) came up from Devon with a rib of beef for Sunday dinner, and our mates from Stamford, Kay & David, came over. We had some good lunches around Malvern, a particularly good one at the Michelin starred Cottage in the Wood, where the restaurant enjoyed spectacular views across the hills. An old friend from our youth, who has recently moved to the area, caught up with us there to reminisce on the past and our changing lives. We visited some National Trust properties and found them well equipped for disabled visitors. At Croome they had a chariot on caterpillar tracks which carried wheelchairs up the stepped entrance to the house, while at Stoke I used a sort of off-road mobility scooter to conduct a thorough visit of the gardens. Actually the sun shone briefly that afternoon making a change from the more or less incessant rain!
My power wheelchair arrived the day before our holiday so I wasn't able to get to grips with it until our return. The pillow lifter was delivered on the day of departure so we took it with us, along with the Nippy, the use of which I had to abandon as it was preventing me from sleeping.
We also discovered on the day we left that Caroline's car had been stolen!
Since our return the weather has been fine, enabling me to get out and about in the Salsa (power wheelchair). It has variable speed up to a heady 4mph and the facility to recline. Because the mid-wheels provide the power it turns very tightly so is extremely manoeuvrable around the house, and the lift moves it (and me) between floors. I soon discovered that the seat cushion provided little protection for the posterior on bumpy paths or taxi rides. So I invested in a premium comfort cushion which smoothes out the rides par excellence. Last Saturday Caroline took me to the Olympic Park where we watched paralympic athletics in the stadium then looked around the park. I was in the chair all day from the time the cab collected us throughout the visit, including lunch in the Champagne & Seafood restaurant, on the journey home by bullet train and a final cab from Ebbsfleet Station, around 7 hours in all! Wonderful day, and not a peep out of my bottom!
Now we are looking into getting a WAV (wheelchair accessible vehicle) through the Motability scheme. It is likely to be a suitably adapted Citroen Berlingo so fingers crossed for success with that.
Today I went for my introductory session with the MND day therapy group at the hospice. Around a dozen men and women affected in different ways by the condition, but most seemed to be able to talk without difficulty, and apart from 3 of us in wheelchairs, walk around too! Everyone was very friendly, the atmosphere was relaxed, we were given a pleasant lunch, with wine if desired, so all in all a very pleasant day. Had a bit of time to myself when they brought me home, which accounts for this catch-up blog!
We spent a great week on holiday with the family in Worcestershire. The cottage was comfortable with adaptations well suited to my needs. The single beds in the ground floor bedroom weren't too clever, though, so after a couple of nights Ross, Mary and Caroline carried me upstairs on a dining chair to a very comfortable bed! We entertained visitors as there was room to have friends to stay over, so Viv (used to be a neighbour) came up from Devon with a rib of beef for Sunday dinner, and our mates from Stamford, Kay & David, came over. We had some good lunches around Malvern, a particularly good one at the Michelin starred Cottage in the Wood, where the restaurant enjoyed spectacular views across the hills. An old friend from our youth, who has recently moved to the area, caught up with us there to reminisce on the past and our changing lives. We visited some National Trust properties and found them well equipped for disabled visitors. At Croome they had a chariot on caterpillar tracks which carried wheelchairs up the stepped entrance to the house, while at Stoke I used a sort of off-road mobility scooter to conduct a thorough visit of the gardens. Actually the sun shone briefly that afternoon making a change from the more or less incessant rain!
My power wheelchair arrived the day before our holiday so I wasn't able to get to grips with it until our return. The pillow lifter was delivered on the day of departure so we took it with us, along with the Nippy, the use of which I had to abandon as it was preventing me from sleeping.
We also discovered on the day we left that Caroline's car had been stolen!
Since our return the weather has been fine, enabling me to get out and about in the Salsa (power wheelchair). It has variable speed up to a heady 4mph and the facility to recline. Because the mid-wheels provide the power it turns very tightly so is extremely manoeuvrable around the house, and the lift moves it (and me) between floors. I soon discovered that the seat cushion provided little protection for the posterior on bumpy paths or taxi rides. So I invested in a premium comfort cushion which smoothes out the rides par excellence. Last Saturday Caroline took me to the Olympic Park where we watched paralympic athletics in the stadium then looked around the park. I was in the chair all day from the time the cab collected us throughout the visit, including lunch in the Champagne & Seafood restaurant, on the journey home by bullet train and a final cab from Ebbsfleet Station, around 7 hours in all! Wonderful day, and not a peep out of my bottom!
Now we are looking into getting a WAV (wheelchair accessible vehicle) through the Motability scheme. It is likely to be a suitably adapted Citroen Berlingo so fingers crossed for success with that.
Today I went for my introductory session with the MND day therapy group at the hospice. Around a dozen men and women affected in different ways by the condition, but most seemed to be able to talk without difficulty, and apart from 3 of us in wheelchairs, walk around too! Everyone was very friendly, the atmosphere was relaxed, we were given a pleasant lunch, with wine if desired, so all in all a very pleasant day. Had a bit of time to myself when they brought me home, which accounts for this catch-up blog!
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