D+600

It’s now 600 days since I was diagnosed 😀 and this last 100 have simply flown by faster than any other.

Regular visitors to the blog will have noticed a change in format over the last few months brought about by the increased activity required to document all the goings on lately. The change wasn’t justified last year as disease progression appeared to be having the greatest impact on my upper limbs and leaving me mostly functional in other respects. But now that I’m weakening all over and events are posted much sooner it has had the effect of diminishing the importance of these D+ posts, so although they’ll continue I don’t expect them to be the major posts they started as. It’s funny really as I never set out to post as frequently as I am lately but as sitting at the computer pushing buttons is one of the few things I can still do I might as well make it mean something and continue to try and raise awareness of this truly awful disease whilst I still have the energy.

Without doubt the global effects of MND are starting to manifest themselves in some quite frightening ways and their implications for the future at times fill me with dread. There are two distinct areas where the disease is now causing me great concern. The first is the steady decline shown over recent months of my respiratory system. I certainly don’t feel like I have the huff and puff that I used to have and it doesn’t take much physical exertion to leave me slightly breathless. The only good thing I can say is that it doesn’t appear to have gotten any worse just lately. I can at least get a good night’s rest and don’t get many headaches – certainly none that I wake up to. So that’s a good sign.

You would think perhaps that the ability to breathe would be the biggest worry I have but at the moment it hasn’t reached the life critical stage or indeed the need for intervention. My biggest worry right now is that my legs are ‘dying’. The muscle tissue in my upper legs is wasting away as the nerves that connect to them start to die off. My legs look thinner, it hurts a little when I get up, I feel less certain of my balance, and my legs generally feel a lot weaker in trying to hold me up. I live with the fear of falling over and being trapped helpless on the floor…or worse, falling down the stairs and really hurting myself. I feel frustrated on sunny days when I can no longer simply go for a walk as I would tire too quickly. I’m worried about losing access to whole areas of my own house and I’m starting to wonder if this will be the last year I am able to stand up. It worries me that I live alone with a disease that won’t allow the luxury of independent living.

The increased difficulties I’m now experiencing have meant taking a closer look at the house and deciding on ways to adapt it. Stairs are becoming the biggest challenge but an order placed for a stairlift should buy me some time. Further ahead will be more significant adaptations but will at least enable me to stay in my own home.

As the disease has progressed so too has my care package grown to accommodate it but at least I now have the added reassurance of someone close to hand for more of the day. The big change recently has been the gradual transition and eventual surrender of all personal care. It really does take some getting used to having someone else wash you and attend to your needs but fortunately I had some time to get to know my lovely carers before we got to this point so I actually (amazingly) feel quite comfortable with them doing it. It also helped by gradually introducing one aspect of my care at a time. With all this care and attention I’m receiving I feel quite pampered at times. And despite all the gloom and doom lately I have to say how wonderful my carers are. They have made life so much more bearable for me. They all go that extra mile and really do look after me in so many ways. Thank you girls…for everything. Without you life would be quite unpleasant by now.

I hope I don’t put a hex on it by saying that the one area that remains completely unaffected is the bulbar area. My ability to talk is completely normal, thank goodness as communication and making your needs known is such a crucial human skill. Despite losing some weight my appetite in general remains healthy – my carers will back me up on that one! I’m still able to chew and swallow normally, and long may it continue.

Mark

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Heading into summer (June) – part 2

Calendar entries highlighted in yellow

9th June 2009 – Order placed / A potential new carer is introduced

I’ve received an email from Cheryl (the Grant Officer) to say that an approval notice for the stairlift was on its way to me and that it was now okay to contact the company whose quotation had been selected. I immediately swung into action and phoned up Liftech (the same company responsible for fitting my electric door openers) and gave them the go ahead to proceed with the order. Unfortunately because the order is being fulfilled under grant conditions they were unwilling to process it until they had a copy of the Grant Authorisation. After some to-ing and fro-ing with the Council I was able to obtain an electronic copy which I forwarded to Liftech. I’m now just waiting for confirmation.

I was introduced to a potential new carer this evening who may be joining my care team. At the moment I have just three main carers with a couple of backups. Unfortunately they cannot completely cover for each other due to other commitments. I therefore need someone else who can fill the gaps and provide cover. For tonight the intention was to just meet and chat with me and to shadow Alison who was preparing my evening meal. We explained to her the evening routine and the sort of things that are expected. What surprised me though was finding out that she had no care experience and had come from an entirely different career background. Now I’ve no objection to giving someone a fair chance but question the logic in placing a complete newcomer with an MND client that has an escalating need. For now I suppose we’ll just see how she gets on with a few evenings and go from there. But she’ll have a lot to live up to as Alison, Ann & Francesca already do so much for me – and do it very well.

10th June 2009 – Spending time with my relatives / Back to the Respiratory Centre

Woke up feeling distinctly under the weather today of all days. I was due to pay another visit to the Respiratory Centre down in Southampton in the afternoon and my Uncle had kindly offered to take me. But first I spent a few hours with my Aunt & Uncle just chatting and catching a bite to eat although my appetite was very poor and I struggled to eat much.

The walk from the disabled car park and through the hospital left me feeling weak in the legs and I was glad to finally reach the waiting area. Didn’t get seen straight away this time but after a long wait was ferried off to a nurse who run a few tests including blood pressure. Not as many tests as last time, much to my surprise. Getting up from the low chair required help from the male nurse, another indicator of how my legs are deteriorating compared to last time. Eventually I got to see the specialist, Dr Wilkinson, and the good news is that based on our discussion she feels that there is still no need to intervene with regards to non-invasive ventilation as at the moment it seems that respiratory performance is stable, phew!. To be honest I kind of had a feeling she was going to say that as my sleep patterns still seemed normal with no headaches or nausea in the morning. We talked about NIV and I said that when the time comes I would like to trial it. I then asked how much time the care agency would need to put people on sleep-nights in place. In most cases there is a gradual decline in breathing so provided that I am monitored regularly there should be plenty of time. Just occasionally things take a more dramatic turn in which case it might be necessary to spend a few days in the hospital before being discharged to find the care package in place at home. I’m due to see her again in September and I’ve been told I’ll have the full set of tests next time (arterial blood/gas, snip, exhale etc). Can’t wait.

11th June 2009 – Not myself today / Review of my care package

Still not feeling right in myself and definitely struggling to get through my meals. I really do need to keep my calorific intake up or my weight and energy levels will plummet further.

I had a review of my care package with Rachel, my Social Care Manager. It’s the first one we’ve had since the package was increased and she was keen to find out how the additional hours and lunchtime call were benefiting me. I explained that they were having a significant benefit now that my personal care needs had escalated as things could be done in a more leisurely fashion. As always I took the opportunity to praise up my wonderful carers. Our conversation then led to a couple of off-topic subjects that were of particular interest to me. One was being given the contact details of a solicitor who would be willing to call out to my house to discuss a couple of legal matters I need setting up. The other was an offer from Rachel to get AbilityNet to come out and do a computer assessment. This is particularly timely considering all the problems I’m experiencing lately using my computers.

Chased up Liftech to make sure they’d received my email order confirmation and was told they needed a 10% deposit before starting. I’m now running around transferring funds so I can get a cheque written out and posted back to them – more delays!

13th June 2009 – Secretarial duties

We’ve had some lovely weather today and it would have been so nice to have been able to spend some of my social hours getting some fresh air. Unfortunately I had some pressing paperwork that needed to be done and Francesca has kindly volunteered to be my secretary as I have lost the ability to hold a pen and form characters. My handwriting is now worse than when I started school! One of the documents we put together this morning was a living will so now I’ll be in a position to hand it to my doctor next week when I see her. Thank you, Francesca.

14th June 2009 – Little surprises

Glorious weather again and I’m trapped indoors alone and hot. Sitting by my laptop at the dining table all I can do is look out of the patio window with envious eyes and dream of walking along the bridle paths nearby. I’ve lost all confidence to attempt walking far from the house by myself and on days like this it is particularly frustrating. Francesca came to my rescue late this afternoon and dropped in for a surprise visit on her way home and offered to take me for a short walk, bless her. It was so lovely getting some fresh air although I could soon feel my legs tiring – worth it though. I had an even bigger surprise when we arrived home to discover that my brother Jason and his wife Chery had just arrived unexpected to tell me all about their short break in Paris and Euro Disney this week as well as baring a gift of some Parisian Chocolate. Thank you!

Mark

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MND Awareness Week 20th – 28th June 2009

What does it mean to have Motor Neurone Disease?

It means…

  • Seeing your life stripped away like the layers of an onion as you are forced to live the remainder of your life in reverse, gradually losing the abilities learnt as a child such as tying shoelaces, buttoning shirts, brushing your teeth or even writing your own name.
  • Giving up work and the loss of self-esteem and the financial independence it brings.
  • Saying goodbye to driving a car, riding a motorcycle or even a bicycle.
  • Giving up sports activities or even simpler pleasures like going for a walk to get some fresh air or enjoying the thrill of cycling down country lanes.
  • Learning to live a life of dwindling physical abilities where even the most basic of life’s tasks such as personal care and dressing are at first difficult and then impossible.
  • Seeing all the hobbies and interests that made life interesting, fulfilling, rich and rewarding slip away.
  • Learning to adapt to a world that isn’t for the most part geared up for disability, and where familiar objects become gradually more difficult to interact with, so that making a phone call for example, getting a DVD out of its case to watch, or turning the pages of a book present insurmountable problems.
  • Seeing your home gradually fill up with gadgets to make life easier and eventually having to adapt the house itself…or be forced to move.
  • Experiencing the terror of gradually becoming locked inside your own body as month by month the muscles weaken and paralyse.
  • Feeling the frustration of not being able to hold the ones you love.
  • Living with the fear of falling over and being trapped helpless on the floor, or worse, suffering injury.
  • Losing the power of speech and the ability to express your own wishes, and the feeling of social isolation it brings.
  • Losing the ability to eat and drink, one of life’s basic pleasures, and being fed by plastic tube directly into the stomach.
  • Struggling for each breath and sleeping with a ventilator.
  • Dealing with choking fits that leave you utterly exhausted, and the sheer agony of painful muscle cramps.
  • Struggling to find ways of getting comfortable when the body no longer responds, and dealing with the frustration of itches you can no longer scratch.
  • Losing your mobility and personal freedom and living out the remainder of your life in a wheelchair.
  • Seeing your life change from one of independence to one of total dependence as you are forced to accept help from family, friends or professional carers.
  • Feeling the crushing sadness of knowing that you’ll die long before your time and not grow old with family or be there for key events.
  • Living with the knowledge that your remaining life will be significantly short and knowing that there is no known cure.

MND Awareness Week (20th – 28th June)

To raise awareness of this chronic neurological condition the MND Association here in the UK have organised a national awareness week. This blog entry (which I dedicate to all my fellow sufferers) is my own small contribution to raising awareness. Regular visitors to the blog will of course already have a good idea of how the disease has impacted my own life so far. Those new to the site might like to dip into some of the resources I’ve posted links to.

Here are a few statistics and facts about the disease.

  • Motor Neurone Disease is a rapidly spreading neurodegenerative disease which attacks the nerves that control voluntary movement. As these nerves die, the muscles (through lack of electrical nerve stimulation) begin to weaken and atrophy which leads to paralysis. Life expectancy is normally dictated by the weakening of the breathing muscles.
  • Motor Neurone Disease affects around 5,000 in the UK (around 30,000 in USA). Every day in this country five people die from MND
  • The cause of the disease is unknown and average life expectancy is just 2-5 years from symptom onset. Around half will die within 14 months of diagnosis.
  • The number of people who develop MND in the UK each year is around 2 in every 100,000 and the number who have MND is around 7 in every 100,000
  • It affects both men and women although men are slightly more at risk (about 1.5x)
  • You can get it at any time in adult life – even as young as in your early twenties but average age is 60-65
  • Only about 10% of cases are familial (inherited) whilst the remaining 90% are sporadic (i.e. appears for no apparent reason).
  • There is no test for MND. Diagnosis is arrived at by elimination and the experience of the Neurologist
  • The number of people with MND is set to increase due to an aging population. This will place a tremendous burden on health care services.

The Motor Neurone Disease Association has a vision of a world free of MND.

To achieve this goal they fund research into understanding the causes of MND, how it can be diagnosed, and how to treat it effectively before it has a chance to destroy a person’s quality of life.

On the patient side the Association provides a whole range of services to ensure that people with MND receive the best standard of care and achieve the highest quality of life possible as well as providing support to the families and carers of people with MND. Those services include:

  • A nationwide support and advice service called MND Connect
  • A highly informative website rich in information and containing many useful documents which can be downloaded
  • A network of almost 100 branches and groups scattered across the country which provide local support to patients in that area and also perform various fundraising activities. My nearest one is the North Hants branch and it is these people who I keep in touch with
  • Approximately 350 Association Visitors. These are volunteers who are effectively the face of the MND Association as far as the patients are concerned. It is they who befriend and support people with MND and provide advice and guidance. It was through an AV that I had my first contact with the Association.
  • A network of Care Centres across the country which provide all the specialists (i.e. a multidisciplinary team) required to care for people with such a complex illness under one roof

On the health care professional, government and public sector side the Association is active by:

  • Campaigning nationally and locally for better care for people with MND
  • Raising awareness of the disease and working in partnership with MPs, Civil Servants, donors and fundraisers
  • Providing education and influencing local Health and Social Care Professionals via Regional Care Development Advisors

So there you have it, my contribution to help raise awareness. Tell me, do you feel more ‘aware’ now? I’m certainly very grateful that there is such a professional, dedicated and caring charity fighting on behalf of all the sufferers in this country. Twenty-five or so years ago the situation here was totally different and although a diagnosis of MND is still unfortunately a very bad one, care and symptom control has come a long way. Not only that but research has escalated to unprecedented levels giving hope that at least one day we will unlock the secrets of this enigmatic disease.

Just before I sign off here are a few things you may like to consider for which I’ve provided the links.

  • If you would like to make a donation to the MND Association then you can do so here.
  • If you would like to become a member of the MND Association you can do so here.
  • If you feel that you would like to become involved and would like to know more about voluntary work you can find out here.
  • If you would just like to know more about the Association then please click here.

Thank you for sparing the time to read this post.

Mark

Parts of this article have been taken or adapted from last year’s MND Awareness blog entry which you can read here.

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Heading into summer (June) – part 1

Calendar entries highlighted in yellow

1st June 2009 – A good start to the month – not!

The fan oven on my cooker is blowing cold air! It suddenly dawned on me to check it this morning after one of the electrical circuits in the house tripped yesterday evening when my carer was here. The circuit took out my central heating boiler, cooker, desktop PC, bedside clock and my new electric door openers. That’s when we discovered that something was wrong – when she tried to leave the house and the doors failed to respond! Thankfully once I’d directed her to reset the MCB everything returned to normal and I thought no more about it. But it was obviously playing on my mind today as I recalled a similar circuit failure three years ago when the heating element on my fan oven blew and tripped the MCB. I was particularly unlucky that time as my desktop PC was in the process of writing to the hard disk. The sudden power cut resulted in the hard disk crashing and total data corruption. Thank goodness for backups. So when I asked Ann to switch the fan oven on this morning it wasn’t a great surprise to find it still cold after 10 minutes. I then had to rely on Ann who was kind enough to stay and help me find a repair company. My arms are so bad now that I just can’t flick through the pages of trade directories and even dialling multiple phone numbers tire my fingers out. Anyway, with luck it should be repaired by Wednesday.

I’ve received some paperwork from the council on the preliminary means test for the Disabled Facilities Grant. Phoned up Cheryl to see how things are progressing and was told they are just waiting on the final stairlift quotation. Once that’s in she’ll issue a release note so that we can go ahead and place an order.

2nd June 2009 – Techie stuff

It’s been a very hot day with temperatures around 25 deg C. I actually managed to spend some time sitting out on the patio before the sun moved round to the back of the house and turned it into an oven. I’m normally catching up on emails and news in the morning but had my computer tied up upgrading to the new Service Pack 2 for Vista so didn’t want to disturb it. In the afternoon I had a break from all things MND and evaluated the new Windows Live Mesh which enables you to keep your files synchronised across multiple devices such as desktop and laptop computers, PDA’s and smart phones. I really do believe that it helps to keep your mind occupied and engaged in interesting things and I actually enjoyed playing around with the software. It reminded me of the days I used to evaluate software at work so I could train others. I think if I just sat around and brooded all the time I would deteriorate a lot quicker so learning things like this keeps me active.

3rd June 2009 – A repairman calls / A new way to go shopping

Had a bit of a restless night. It was hot and I just couldn’t get comfortable on my back. With my arms and hands becoming ever more paralysed it’s becoming harder to know where to rest them. I really do miss being able to turn on my side but it just hurts my shoulders too much.

The cooker repairman arrived early this morning, diagnosed the problem and quickly confirmed my suspicion – it was the heating element. These things don’t take long to swap over and in no time at all I had a hot oven again – and withdrawal symptoms over how much it cost. That’s two elements in less than eight years. They don’t make things to last these days, that’s for sure.

Francesca called round midday to prepare my lunchtime snack and to use up a little of this week’s social time by taking me to the supermarket where I had my first experience of being pushed around in a wheelchair. I had intended to walk around the aisles but half way round my legs started feeling rather weak so a concerned Francesca went off and grabbed one of the courtesy wheelchairs that Sainsburys provide. I must say that it felt rather strange seeing the shop from a lower height but apart from that the only thing I worried about was the embarrassment of running into people I knew – I know, silly really. I’ll get used to it. But at the moment I’m still in that intermediate stage between walking and not.

Cheryl (the Grant Officer) phoned to say that all three stairlift quotes are now in. Price and feature-wise they’re all pretty close so I’m just waiting for an authorisation note to be issued so I can go ahead with placing an order. I’m actually paying for the stairlift out of my own funds so the purpose of the authorisation note is to ensure that this amount is deducted from whatever I will be required to contribute towards a Disabled Facilities Grant to adapt the house – assuming I get it.

4th June 2009 – Dinner with Alison

It’s been a hot sunny day again and I’ve spent an enjoyable afternoon down at West End (near Southampton) with Alison, my lovely friend and carer. We had a really nice and relaxing meal at Haskins together. I’ve never been there before and imagined it to be a restaurant of some kind so was rather surprised when it turned out to be a garden centre. But it’s not like any I’ve been to; this place was huge and more like a superstore, catering not just for all things to do with gardens but also all manner of gifts for the home. Tucked away at one end was a large restaurant split into two rooms and overlooking some of the larger plants and a screen of trees, behind which I caught a glimpse of a couple of Spitfires flying low – bonus! Alison treated us to a lovely roast lunch with all the trimmings, a huge piece of triple layer chocolate cake and a pot of tea – nothing wrong with my appetite although I was grateful that Alison helped feed me when my arms tired. All in all it was a pleasant afternoon. It’s so nice to be able to still go out for a meal and have a change of scenery. Thank you, Alison.

‘Gavin the Gardener’ has pretty much finished tidying up the front and back garden this morning. From now on he’ll call every two weeks just to keep it up to scratch. It looks so much better now.

7th June 2009 – Frustrating weekend

I’m having real problems with my hands again this weekend and it’s starting to seriously impact my ability to interact with my computer. As this is both a crucial tool and just about the only thing I now have which can occupy and engage my mind throughout the day, I am understandably rather concerned. I’ve mentioned before that I use an adapted Ergo Rest to support my right hand and arm with the fingers hanging over the edge. The trouble now is that it is becoming increasingly difficult to keep my fingers straight. They keep trying to curl in towards the palm and this has the effect of my fingernails making contact with the trackpad instead of the fleshy fingerprint area of the finger. Trackpads don’t respond to dragging fingernails so I’ve spent a frustrating amount of time staring at a cursor that refuses to move. Annoyingly it would seem that fingernail length is now directly affecting computer usage and I’m having to keep asking for them to be clipped! Need to find some other solutions – like finger splints for example. But aside from that my fingers are just getting that much more tired and need frequent breaks. My ability to type cannot keep up with my thoughts. Very frustrating.

Mark

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The month of May – part 5

Calendar entries highlighted in yellow

23rd May – Return to Black Dam!

Woke up to a gorgeous clear blue sky – not a single cloud in sight! With my personal care and breakfast out of the way, Francesca and I headed off to Black Dam once again. Although it’s the third time this month I’ve yet to grow tired of this tranquil little part of town that I’ve overlooked for so long. This time I got my trainee staff blog photographer to bring along my sturdy tripod and infra-red remote trigger in the hope that it might make it a bit easier to get some pictures of us together. As it turned out the remote trigger proved to be rather temperamental but we persevered and got there in the end. Technology! 🙄

There were lots of ducks and geese around this week and even Mr & Mrs Swan put in an appearance. I walked along the water’s edge under the shade of the weeping willows watching Francesca trying to entice the birds out of the water with pieces of bread. At one point we saw a whole brace of ducks swimming towards us, each one leaving a V shaped wake behind it. The pattern would have made a good picture. Anyway, here’s a few shots of Francesca and I just goofing around and having fun with the camera. Nothing too serious today, just enjoying the moment.

Lean on me! Francesca and I at Black Dam

Big smiles. Francesca and I at Black Dam

Happy! Francesca and I at Black Dam

Sneaky! Francesca and I at Black Dam

Is it on? Francesca and I at Black Dam

Where did those antlers come from? Francesca and I at Black Dam

Laughs. Francesca and I at Black Dam

Oh, and before I forget, thank you Francesca for writing out my nephew’s birthday card. I couldn’t have done it without you – literally. It’s so frustrating now not being able to write out family greetings cards for that personal touch.

25th May – More fun with the stairs

I’m not having a good time with the stairs lately. After last week’s fall I’ve had a hard time rebuilding my confidence and using the stairs has become very stressful. Yesterday when looking around my niece & nephew’s new home I was almost paralysed with fear coming down the straight, steep & narrow staircase. I was okay going up (albeit slowly) but as soon as I tried making my way down my balance seemed to alter, my legs felt weaker and my confidence left me. I ended up coming down the stairs sandwiched between my brother and sister-in-law with my hands resting on the banister.

Today when I woke up it took multiple attempts before I found the confidence to step off the landing and walk downstairs. Later in the day I got trapped upstairs again as my legs just felt too unreliable to attempt the descent and my arms are completely useless and cannot be relied on should I start to fall. Eventually I decided to try something different by sitting on my bottom and coming down the stairs one step at a time. So I held onto the banister rail that overhangs the stairwell and with my back against the wall gingerly slid down so that I was on the floor. No sooner had I done this when I realised that if this failed I would be trapped on the floor until my carer arrived. I have very little upper body strength now so it took a lot of wriggling along the carpet, whilst trying to ensure that my arms didn’t get trapped, before I was positioned face down with my legs pointing down the stairs. I then had to spin myself round and slowly descend on my bottom one step at a time in a completely undignified way until I was about three steps from the floor. At this height I was able to raise myself up albeit with trembling legs. Phew, what a nightmare! I think the staircase is an accident waiting to happen. I really wish I had the stairlift in place already but I’m still waiting for one more quote later this week. The other thing I wish I had was a downstairs toilet. That would make life so much easier for me as I would only need to use the stairs at the beginning and end of the day. I think every 2-story house should have one.

I tried to get on and edit some more digital photos from my recent excursions, but trying to simultaneously use the keyboard and mouse (required for certain editing tools) is proving frustratingly difficult. For all the time I spent on it this afternoon I still only managed to complete five photos.

Half way through the evening, shortly before I planned to sit down and watch some TV, I got stuck upstairs again on a visit to the bathroom. After the climb up my legs felt very weak and as soon as I attempted to descend my balance became unpredictable. I ended up having a very early night!

26th May – Taking it easy

Thanks to being stranded upstairs last night I ended up spending twelve hours in bed, haha. Amazingly I was able to sleep through most of it, although I did get confused at one point when I heard car doors slamming – I thought someone was off to work but it was someone arriving home at midnight! I’d only been asleep three hours! When morning finally arrived I didn’t attempt going down stairs until Ann arrived by which time my legs felt a bit more reliable. But I’m so wary of my legs now that I found myself trying to arrange my trips to the bathroom around the times when one of my carers was around. For the rest of the day I was sitting in one chair or another as I’ve noticed recently that my upper leg muscles are starting to hurt a little when I get up. It’s actually quite frightening the speed at which my legs are weakening now and I’m starting to grow concerned about the time I’m here at home on my own. Having carers around at least gives me some peace of mind.

Looking out the patio windows as I type away on my laptop and seeing the sun shining down from a clear blue sky brings a certain frustration and sadness. Not so many weeks ago I was at least able to go for short walks along the field behind the house but now I daren’t even attempt that. And I would give so much to be able to get on my bike and go cycling along the country lanes again. This is a very cruel disease.

28th May – More measuring up / An afternoon with Alison

‘Gavin the Gardener’ spent most of the morning tidying up my back garden and it really is starting to look a lot better. I’m glad I’ve been able to find such a hard working and reliable gardener. At least that’s one thing I don’t have to worry about anymore.

I had Paul from Bentley Mobility call at lunchtime to measure up and quote for a stairlift. This is the third and final quotation. Because of the way my legs are going lately I’m really keen to get things moving now. Delivery times with this company seem very good – if true. I’m being told that Stannah are currently able to offer an express service on curved track stairlifts and can deliver in 2 weeks. Add another week for the photographic survey and drawings and where still only looking at 3 weeks. Fingers crossed I’m hoping to be in a position next week to place an order.

Here’s a few scans from the brochure.

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

I had a pleasant afternoon with Alison using up some of this week’s social hours. She’d brought along a super-lightweight wheelchair that had been loaned by a friend just in case the walking proved too much. Although I had a little sit in it to see how it felt I was determined to get through the remainder of this month under my own steam. I had only been walking around the town centre for about ten or so minutes before I began to question the wisdom of my actions. My legs soon started to feel weak under the strain of supporting me and before heading back to the car I took a few minutes out to rest on a bench in the shopping mall. Clearly the days of me hoping on a bus and wandering around town by myself are over and in future I’ll just have to swallow my pride and accept being pushed around. The rest of the afternoon was less stressful and far more enjoyable as all I had to do was sit in Alison’s car whilst we took a pleasant drive down to Winchester. It was so nice just to sit there with the windows open and being buffeted by the warm air. Thank you, Alison, for everything this afternoon.

29th May – Spoilt by my carers – yet again!

Want another example of how much my carers spoil me? I have three flower tubs at the front of the house that through neglect had become infested with weeds. Ann had been to a garden centre yesterday and bought me a whole range of bedding plants so after she’d finished my care she got stuck into a spot of container gardening. By the time she had finished I had three tubs full of colourful plants that make the front of the house look so much nicer. How kind is that? I really am lucky to have such wonderful people looking after me.

Tried to go for a short walk with Francesca at lunchtime but didn’t get far before my legs started to tire and I felt it prudent to turn back and head for the safety of home. I never thought I’d ever hear myself say this but ‘roll on when I get my own wheelchair’! Well, it’s either that or spend my remaining days housebound and that is simply not an option. I want to continue going out, getting fresh air and having a change of scenery. To think, this time last year I was able to walk anywhere I wanted, and the year before I was cycling all over north Hampshire. What a horrible disease this is turning into as yet another of the things that made life enjoyable for me sails into the history book.

30th May – Weekly treat time again!

 

Sun is shinin’ in the sky,

There ain’t a cloud in sight

It’s stopped rainin’

Everybody’s in a play

And don’t you know

It’s a beautiful new day.

 

Runnin’ down the avenue,(Pant, Pant, Pant)

See how the sun shines brightly

In the city on the streets

Where once was pity,

Mr. Blue Sky is living here today.

 

(Chorus:)

Mr. Blue Sky, please tell us why,

You had to hide away

For so long where did we go wrong.

 

Hey there Mr. Blue

We’re so pleased to be with you

Look around see what you do,

Everybody smiles at you.

 

Mr Blue Sky, Electric Light Orchestra (Jeff Lynne), 1978

 

It’s Saturday, the sun is shining, there’s a clear blue sky, I’ve got the camera loaded, Francesca has the car parked on the driveway, and where headed off to Black Dam once again to supplement the birds weekly food intake. At this rate there are going to be some very obese birds waddling around soon. Don’t blame me guys n gals if you can’t take off!

I’ve been lucky with the Saturdays this month and have been able to get out for most of them. Because of time constraints we are a bit limited how far we can travel so we’re lucky this is so close. Didn’t take too many photos this time but still enjoyed watching the birds antics and being able to relax in the lovely warm weather. My legs were not too bad this morning and I was able to walk around without too much bother although it was reassuring to have benches scattered about. Thank you, Francesca, I really enjoyed this morning.

At Black Dam

At Black Dam

Francesca and I at Black Dam

Alison very kindly dropped by half way through the afternoon to make sure I had plenty of cold drinks on hand as it’s getting more difficult to even get a drink of water from the tap by myself, and on a hot day like today I drink a lot more. This act of kindness is yet another example of how thoughtful and generous with their time my carers are. It’s not even Alison’s turn to provide care for me and yet she still goes out of her way to do so. That’s dedication. Thank you so much, Alison.

From a lovely morning to a frustrating afternoon stuck in the house. I know I should be grateful that I at least managed to get out for an hour this morning (and I am of course), but looking out the patio windows at that beautiful weather and I would have given anything to be able to jump on my bike and go cycling down the country lanes, or simply go walking over to Manydown Farm. Instead I sat in my glide about chair near the patio window and soaked up the heat of the sun like a lizard basking on a rock. We all take our mobility for granted until it starts to fail us. I was just the same and it is so heartbreaking seeing it wither away.

Mark

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