Monthly Archives: January 2017
Today (27th January 2017) marks six years since Steve took the opportunity to beat Huntington’s disease (HD) before giving it a chance to beat him/us.
Each year, to mark the day of Steve’s Angelversary, I like to come in post up an entry to remember Steve and reflect upon life as a HD widow. My previous Angelversary entries can be seen through the links below:
January 2012 – Moving Pictures
January 2013 – Ring a Ring o’ Roses
January 2014 – Inspiration not Frustration
January 2015 – Reaching for the Teaching
January 2016 – Coincidence or Sixth Sense?
Like many people, I like to think of a new year as an opportunity to consolidate things from past years and plan new things. For 2017, I thought I would try to get back into some of the little projects I have been thinking of doing but not got very far with. For example, trying to get hold of Steve’s CAG count to see if that had any relationship to Steve dying relatively young at 49. More details on what a CAG count is can be read HERE.
When Steve was tested in 2005 we were not given anything with a test result stated on it as such. We were simply told it was a ‘positive’ result. In HD terms, 49 is not unusually young. However, most of Steve’s HD affected relatives seem to have died at a much later stage in life. That said, I have just heard of a cousin who died at the end of last year. The cousin was only 40.
I did actually start looking into how to get access to Steve’s records in July last year and spoke to our GP Practice. They gave me a website to go to for guidance and an application form. See HERE. I came across a stumbling block though when it came to sending proof of my identity. My passport had expired; I have no driving license (I gave up after failing the test three times); and getting endorsement of photos can be such a pain where the rules on who can endorse, and who cannot endorse, are so restrictive.
With the New Year, I decided to say s#d the expense and the hassle. Even though I have no plans to ever travel again without Steve I might as well simply apply for a passport renewal. I had originally been thinking it would be cool to be an owner of a post-Brexit passport where my old one expired in May 2016. I have since given up waiting for the Powers That Be to get their acts together. Waiting two years is one thing, waiting for the calming of civil unrest and scaremongering about break up of the UK/a new Hadrian’s Wall is quite another.
A few days back I went on-line to see how I go about applying for a renewal. I was pleasantly surprised to find that the whole process can be done via the Gov.UK. website. With the advent of digital photos I was able to up-load my mug shot and not spend loads of money and several hours in one of those photo booths trying to get an acceptable photo. I’m not just being vain here. I have dodgy eyes (more details below). In the past I have paid for someone to take my photo in one of those places who offer passport services and still had it rejected when I went to the passport checking services at the Post Office!
Sure enough, even after selecting my photo after my having discarded lots of trial ones, the System didn’t like my up-load. At least with the on-line application method it allowed me to supply notes on why I felt I would never be able to provide a photo of a better quality for their purposes. Once submitted, I was informed an actual human being would be involved in checking. No more “Computer says NO”. A human would check my likeness against my old passport and take into account whether or not I had medical reasons for not looking like bright eyed homo sapiens should look.
I had worked on the basis we would probably be talking three months rather than the average three weeks stated on site. For once, the UK digital age has surpassed my expectations! I am now the owner of a new ten year passport which arrived Saturday (21st January). Saturday 14th I did the photo in the comfort of my own home with the aid of a self-timer on my digital camera and having magnolia walls which are allowed for the plain light background. I watch a lot of those home improvement programmes but cannot bear to change the place since Steve and me moved in to the ‘New Build’ ten years ago.
Monday 16th I sent my old passport by secure service to be checked and cancelled. That arrived back by secure (signed for) mail on Friday 20th. Saturday 21st my shiny new passport arrived by secure mail. One side of me thinks efficiency at its best, another part of me worries why such an important document does not need more time for scrutiny and other administration? No pleasing some people I suppose 😦
Now to get cracking on trying to get Steve’s CAG count. Watch this space as they say…
I mentioned above I have what I call dodgy eyes. As a child at around age six I had an operation for a ‘lazy eye’ or ‘squint’ as it was called in my day. It’s now known as ‘Astigmatism‘. Steve had a squint as a child too but his operation went much better than mine, although there were still subtle signs when he became tired bless him.
Apart from the operation not being fully successful (yep I had the patch and the glasses for several years) my eye problems were further compounded when I had brain surgery a few years later for a neavus/Neurocutaneous Melanocytosis (NCM) on my brain. I was about 12 at the time. The brain op was said to have further compounded my scoliosis and muscle weakness. Just call me unlucky.
I got on with life, as you do, and didn’t think much more about my eyes until one day back in 1995 on a shopping trip with Steve to Lakeside Shopping Centre. We ventured into the shiny new Boots Opticians, where they had a special promotion on offering comprehensive eye checks with new state-of-the-art equipment. I thought it would be worth a go and they saw me there and then.
The results were staggering! The comprehensive Field Test highlighted I had a complete loss of vision in parts of both eyes (top right quadrant in my right eye and top left quadrant in my left eye) which restricts my peripheral view by about a quarter in each eye. Further investigations with access to my childhood medical records showed this was picked up on after my brain operation but I had never been told about it.
I assume my parents may have known but they certainly never told me there was a good reason why I couldn’t see as much as others. Not that I was aware of the blind spots as it was just taken for granted I was seeing what others see. With hindsight though, it made sense of why I never did pass my driving test as I really could not see the parked cars properly lol. I have also been told that, now I am aware of the visual problems, getting insurance would be at a ridiculous premium if I ever did learn to drive!
More problems have been discovered with my eyes since that fateful day in 1995. I have since been diagnosed with Narrow Angle Glaucoma. As a result I had the Iridotomy treatment on both eyes (holes lasered into my eyes). The procedure was “only 75% successful” and at my last check up on 19th January this year it appears my corneas are thickening and the pressure rate is reaching the danger threshold, whereby I may need to use special eye drops in the future. When I go back in July they hope to have a better idea of whether I will need further treatment and/or procedures to stabilise pressure and stop possible vision loss.
Going back to the passport photo issues, apart from a squint and having limited peripheral vision with pupils that don’t dilate properly, I have been told that I have very small eyeballs! Both eyes staring straight ahead to pose for a perfect facial picture with central pupils; clear iris and a decent amount of the white of the eye just ain’t gonna happen!
Another thing on my list for 2017 is to get my butt into gear regarding being better at doing my daily physiotherapy exercises to strengthen my foot and aid my poor balance. Last year I was attending physiotherapy at Queen Elizabeth Hospital to help my unstable right ankle and, in turn, my right leg and my back. Without the intense therapy there was no way I could have completed my #SybilOnTour Tube Challenge so my Osteoporosis Specialist referring me for therapy was really timely.
Yep, I have bone and muscle issues on top of everything else. Once again I cry “Just call me unlucky!” Actually, the Physiotherapist suggested I look into asking my GP and other family members about the possibility of having Charcot-Marie-Tooth . The GP said she doubted it would apply and my sister said she didn’t know of any relatives with symptoms so we have put it on the back-burner. I’m banking on cancer getting me first anyway as that seems to be the predominant choice of hereditary disease in my family.
I mentioned #SybilOnTour Tube Challenge above. As an update from my last blog post Warning Signs & Tube Train Lines I have so far managed to raise £400 from that fundraiser. That’s a good amount but not quite the £1,000 I was aiming at so if anyone has any spare change all donations are still welcome HERE.
Also, another subject covered in my last blog post was the business of ‘Duty to Warn’. Tapping into the knowledge of a colleague I was able to find where on-line I could find the listing for the next hearing at the Royal Courts of Justice. It will be Tuesday 28th March – Case B3/2015/1816.
Members of the public can attend courts at the Royal Courts of Justice unless the Room is marked as ‘In Private’ or ‘In Camera’. I may try to go along just to satisfy my own interest (a bit of a busmans’ holiday lol) but I dare say the media will be following up anyway if there is anything of note to report where it could be a landmark legal ruling.
In this blog I have described above a lot of things wrong with me. Some were from my childhood and clearly evident from the moment Steve met me. Some discoveries were shared with Steve along the way. Finding out about ocular problems on a shopping trip in 1995 and finding out around 2002 that I have osteoporosis which could not have been easy for Steve to hear.
When Steve told me he had a father with HD there was no guarantee he would have inherited it. My intuition told me it was likely to be ‘positive’, but he could easily have been ‘negative’. Fifty percent chance of Steve needing me in later years; one hundred percent chance of me needing him to look after me if we lived long enough. Add to that all my personality faults and frailties, even before I took up the role as a carer and all that entails,
HD did affect Steve’s personality but there was always an underlying retention of his sweetness and kindness and tolerance. Whereas me… Cut me like a stick of rock and I have the word ‘Bitch’ running through me. God knows, I even branded myself for my 40th Birthday – see HERE. Like I say in that video ‘Steve was a Saint to put up with me!’.
Steve was my rock and protector and even carer well before I needed to be his. He chose to take me on despite my physical and emotional issues and when we married I was the one most likely to be in a wheelchair as time went on, not him. Despite that, he still wanted to be with me.
Six years on from watching Steve take his last breath, I still marvel at how utterly lovely he was/is as a human being and how lucky I was to have met him and be with him, in whatever form of earthly carbon or heavenly aura he may be. Just call me incredibly LUCKY!
I have inserted below a new poem for Steve and a photo of us taken in 1998 on a cruise. Steve is looking confidently forward at the camera but, as usual, I am trying to veer away from looking straight at the camera. This would annoy professional photographers no end I can tell you. I do love the photo but many of my favourite snaps of myself were taken by Steve. I have also inserted a snap Steve took in 2007 when he was well into being HD symptomatic. I still think he would handle a camera as well as any professional and know how bring out the best in me!
Long before I took on HD,
My darling Steve, you took on me.
Long before you needed my care,
My darling Steve, for me you were there.
Long before the problems came,
My darling Steve, you put me to shame.
Long before your illness came through,
My darling Steve, I felt safe with you.
Long before you needed my hand,
My darling Steve, you helped me to stand.
Long before I needed to cope,
My darling Steve, you gave me such hope.
It’s now long after, I hope that you found,
I was able to help when your turn came around?
And despite my progression, and what lies in store,
My darling Steve, you will help me I’m sure.