Week 4: Dizzy heights

Week 4:26th September Dizzy heights.

In this fourth week since what I call 'D'-day it's been a roller coaster of emotions, energy and focus.

My balance continues to be a challenge when walking, but strangely not when cycling - so I am guessing its more of a motor/physical deterioration rather than sensory .So, this week I started some cycling to sustain leg strength and general fitness, this involved two activities; firstly a road cycle - brand new and first one ever purchased and secondly some work at the local gym involving leg work but also some upper body stuff - both will sustain me until I get some professional intervention from physiotherapists/occupational health #hopefully.
I received a valued donation from the CJD Support Network to cover the majority of this cost.....a very welcome gesture - thank you :) 

A home visit from the local GP practice brought my long term prognosis and unavoidable future deterioration into focus. We talked at some length about this & the process was valuable and at the same time very upsetting.
Thinking that this time next year things would be so different...... but a valuable reminder to prize every day and every experience :)

Resting heavily with me is my current lack of ability to carry out the sort of work I have been doing (physically) recently, whilst my processing of my circumstance is very challenging right now I recognise the need to resolve this area of my life soon - so I will be giving this some focus in the short term & at the same time figuring out how to be financially viable.....

Forms to fill out seem to be arriving now 'blue badge form', and others - I hate form filling, bureaucracy , processes and systems - so believe me when I say, these sit in the 'in tray' and I pray for some help to move them into the 'out tray'.....

One of my son's started at University this week & it was heart warming to see another of my children following their chosen path in life - that's five of us studying a degree in one way or another - all following our dreams and continuing to learn and develop. Never prepared to stand still and stagnate - not that there is anything wrong with a rest now and again - which incidentally I need to do much more of these days. On that note I'm going to settle down to watch the latest Grand Prix and see how my Williams team have got on......

My thought that stuck with me this week is that I am determined not to be defined by this traumatic disease and that the inconvenience can be seen as a unfortunate genetic inheritance -  nothing more. There is so much more to me than a faulty bit of DNA......

Week +3: Making sense of things...

Week 3 : 18th September 2015

This week commenced with a intense G.P. appointment and a somewhat lengthy discussion about prognosis, professional support and engagement with social workers, occupational health etc. The gravity of the situation really hit home at this point as I sensed the difficulties ahead, whilst I know what these are ;- having supported one of my parents through the very same situation, now the situation felt more raw and confrontational in this clinical setting.

I'm staying occupied with some reading and continued focus on my study/self-development  programmes that I intend on focusing on as long as my health will permit.

Some close/good friends have been in touch and I've been able to re-establish these important links :)

Equally my extended family are being great with equal measures of support, normality and friendship.

The hardest part of the week, for me, was attempting to discuss my situation with one of my children .... I reflected that it would have been less painful to cut my heart out with a blunt spoon and stamp all over it......so painful and upsetting....

This little cartoon (might not be able to read the text .. but it says..........

"Dads goal is for you to grow up and be proud, confident happy and safe. He teaches you to believe in yourself and never give up. It's his job as a Dad - I think he likes doing it a lot !" 
"Do not underestimate the power of the father. Your dad helps you become you."

- Made me think and reflect about my time as a father to my own children and my efforts to be the best dad I can :)

My younger brother bought me a great gift this week.....

at last my very own Wilson :-)))

Next week I have visits from occupational health and social workers to assess the way forward :-/

11th September 2015

Week 2:                                                                                              

This week has consisted of absorbing and processing this recent news then moving onto sharing with relevant others. The main focus being the challenging task of engaging with my nearest and dearest to try and make some sense of this unfolding chapter.

A really emotionally draining week; not only taking care of myself but also trying to adapt to the needs of my closest family.

This unfolding journey becoming one of 'drawing together' and finding strength/sustenance from good friends and family

Some progressive activity this week includes:

• Chiropractor intervention to help with long term back pain.
• Sourcing a quality road cycle to help maintain strength in legs as I'm not using them enough and notice a deterioration in muscle tone and bulk. I hope to join the gym next week too to assist in this process, working on core strength and leg strength. The overall idea to maintain mobility as long as possible.
• Setting up appointments with the team that will be involved in my long term well-being package
• Starting to draft some ideas for end of life plan/living will/advance directive

I'd been planning to go to London today (Friday) to attend the Dignity in Dying debate in  & near parliament - but feel too tired and would have difficulty on  my own I think. So will watch on TV as a supportive advocate. I'm clearly focused on the outcome of this ethical and existential process. 

Had a great catch up with an amazing chap last night - was great to hear about things outside my own dilemma.

Today is filled with more encounters of the human kind...... :)

1st attempt at 'blogging'

Living with death   

Eight years since diagnosis & 10 days have passed since I received the devastating news that the symptoms of my Inherited Prion Disease illness have started , by my reckoning (based on specialist feedback) this gives me between 1 & 2 yrs life expectancy.

Inherited Prion Disease (IPD) is a untreatable neurological condition ,also known as inherited CJD ; the symptoms of which you may be more familiar with.

These symptoms include:

• Behavioural Symptoms
• Communication Problems
• Memory/Cognitive Deficits
• Movement Problems
• Swallowing Problems
• Visual/Perceptual Problems
• Seizures

If you are interested in more details you might want to read more details; check out the website:

http://www.prion.ucl.ac.uk/clinic-services/information/signs-and-symptoms/

The illness means that holes will appear in my brain and affect all of the above in one way, shape, or form.
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I thought I'd try writing a blog to capture my journey and use as a therapy for myself and it may be of interest to others .....

I'll endeavour to make it personal ,sensitive and respect confidentiality at all times :)