Frustration is a very apt word
When I wrote my last blog post I swore I wouldn’t leave it as long in between writing because there is always so much to say. Well it’s been just over two months so I’m racking my brain to remember where I got to. Apologies this one is so long. Also, I don’t set out to make these posts upsetting but I’m aware they can be, in fact its always a good reminder for me that MND doesn’t just affect me, but everyone around me, so thank you all for being here, I hope we can have a few laughs at my expense too.
Don’t get me wrong, I know things are going to get a lot worse, but while I still have some mobility and use of my hands, I still expect to be able to do things. But sadly everything is more difficult now. Going to the toilet…. nightmare, getting dressed… painful, shaving…awkward – I can’t go out via the front door as I can neither shut it or unlock it, crisp packets have to be opened with scissors, carrying tea upstairs to my office is like a new challenge on the Crystal Maze… how much tea will be left in the cup? The ironic thing is that tasks like unlocking the car door which are already difficult for me are made even more so by dropping the key or when I finally getting the cap off the milk only to drop the lid on the floor… you get the picture.
Anyway, eventually my expectations will become lower and i’ll accept the fact that I need help for the most basic of tasks and the frustration may ease, but in the mean time I will continue to glare at my thumbs for not having the strength to change the volume on my phone !
I attended my two follow up ophthalmology (that’s eyes for those lucky enough to have 20/20) appointments and this is where my frustration really kicked in. Not only was it a waste of my precious time but also a waste of NHS appointments and expense. Three different consultants, who all knew full well that they either wouldn’t apply for funding full stop or knew I wouldn’t get it. I did think about writing to my MP but to be honest I don’t have the energy to fight, so I’ll just have to stick to dirty glasses and stumbling around in the dark.
An MND Update
Since my last post I have seen both consultant Professor Talbot in Oxford and Dr Fuller in Cheltenham. Neither offer any thing new (still no cure) really, they just like to be updated as to my current symptoms and I guess it helps them understand how the disease progresses.
I was cheered up by Professor Talbot who enjoyed telling me that he has a 90 yr old patient with stronger neck muscles than me. I like to think of him as my own Doc Martin.
Indeed the Oxford team said I didn’t need to attend but I always find that I come away from seeing the MND nurses and OT’s with some little tit-bit of useful information that helps, this time round it was Access To Work which is a government scheme to keep me working for as long as possible. In my case they have funded a special mouse and keyboard, elbow supports and voice activation software.
I’ve also seen about six different Occupational Therapists and Specialists the most recent of which came from Oxford to measure me for a special arm support (think of a cheaper version of Robocop). Essentially it lets me use my arm without tiring out the shoulder muscles too much. I don’t need it yet but it will be very useful in the long run.
It’s also the first time someone has mentioned getting a wheelchair, just in case I am out and about and I get too tired. I will hold off on that for as long as possible even if that means sitting down every five minutes.
I am having trouble with saliva, which is one of the many common MND symptoms. I can still swallow and eat without problems but I do get a build-up of saliva which can cause me to choke a bit and cough. There is medication but the experts recommend sucking pineapple as the enzymes help break down the saliva.
Also, If you haven’t spoken to me for a while, when you next do, you’ll hear that many of my words are a little slurred. I worry that I haven’t recorded enough of my voice to make a decent digital version and I may have left it too late…. idiot. I can feel Becky’s eyes burning into the back of my head as she tells me to do it every week.
Pain In The ALS Golf Day – The Golf Day was amazing and even though I didn’t even touch a golf club it was a great success, raising just over £9000 split between MND Association & MND Gloucestershire Branch. Several of the team at Brickhampton remarked that it was one of, if not the, best golf day’s that had managed, so I would again like to thank everybody who played, those that sponsored, those who helped out and those who bought raffle tickets and auction prizes. I can’t wait to do it all over again next year.
I can still just about play nine holes of golf (weird to think I can swing a club but not open a packet of crisps!!). I have to strap the club to my hand and I can only swing so far as it hurts my shoulder but my shots usually go straight and occasionally I can even par a hole. So while I did have thoughts of quitting I’ve decided to keep playing until it actually starts to piss me off more than it always has done. Or it pisses off the people are playing with.
Clay Pigeon Shoot – Becky’s dad organised a clay shooting evening at Hollow Foss through one of his many contacts. It was a wonderful evening and I’m sure everyone enjoyed themselves. Colin managed to raise over £2000 to help towards our house move costs even though his target was only £500. Thank you Colin !! On the subject of house move things are progressing, albeit a little slowly, but we hope to move house sometime in November. We are eternally grateful to Nick Rowe for Lodders for offering us free conveyancing.
Cheltenham Half – 20 of my crazy school friends, most of whom have not run since school, are running the Cheltenham Half Marathon on October 1st. They have raised just over £2200 and we look forward to supporting them on the day. Becky’s (and my) friend Amy Gore is also running and has raised over £1000. Its very humbling when people put themselves out for you, incurring countless injuries, expense and the level of time and effort is inspiring.
Charity Rugby Match – If you have nothing to do on Saturday 7th October, do come down to Newlands Park and watch a feast of rugby with 3 matches taking place one after the other. A Cheltenham Vets team will take on Cheltenham Civil Service, followed by the Senior mens and Ladies. Long standing ladies player Laura Hale is having her testimonial year and is donating money to MND.
If you do have an event planned please let me know so I can help promote it and I can add you to my Fight Back Fund (580043 | Pain in the ALS).
Fun in the Sun
My friends often refer to me as Judith Chalmers because of the amount of events, breaks and holidays I go on. Well all I can say is don’t expect that to slow down !!
We recently enjoyed the wonderful family holiday in Sardinia, I didn’t even take my laptop ! It was a great opportunity to relax in a nice warm climate which means I’ll get fewer cramps.
One frustrating thing is that I do get lots of looks however. I barely have the co-ordination to carry two glasses of orange juice across the breakfast room and I must have looked like Lord Muck as I sat at the table waiting for Becky to bring me my meal and then cut it up for me. However, I’m used to looking stupid as I’ve played rugby all my life, people should be grateful I kept my clothes on !
Freddie loved it and eventually warmed to the cooling pools (although he refused to brave the sea). On the first day, I took Freddie off to have a kick around and unsurprisingly he got bored and hot quite quickly. On trying to walk back to room could only carry him 20 paces at a time as I just don’t have the upper-body strength to carry him for long (and he is a lump now). This became very stressful for both of us and is something I am very conscious of now and I certainly won’t carry him down a set of stairs anymore.
This highlights one thing that nobody ever speaks about, aside from the other issues MND causes. That is the feeling of a loss of masculinity. Don’t get me wrong, I’m all for equal rights, but there are some jobs I believe a man should do such as putting out the bins and collecting the bags from the carousel. I have the strength to do that neither, cue more strange looks as Becky is hauling heavy holiday backs into the back of the car while I’m stood watching and holding Freddie’s hand. Becky really is a very special person, I’d be utterly lost without her. These are great memories for Becky & I and I try to convince myself that Freddie will remember some small part of it.
1 Year Anniversary
I am approaching a year since I was formally diagnosed (October 4th 2016) and I guess I am in little surprised at how quickly some things have progressed but equally pleased that I can still walk about and just about cope on my own still. 50% of people with MND die within the 1st year, so you can already see that I’m a born fighter and I’m determined to make many more memories with Freddie & Becky.
I’m still working,which is good as like most people I have bills to pay. I am seriously thinking about how to start winding things down so if you know anybody who would like to join forces with me so that I can keep my 40+ clients happy please get in touch.
Thanks for reading – I’ll be back soon.