Week 8+ : A cruel disease .....

Walk the talk....

It has struck me over the last few days how cruel and unforgiving this disease can be -

Whilst cognitive function, ability to rationally think/process and awareness of self remain seemingly intact my ability to make my legs do what they have been doing for the last 44 years presents a mindful challenge. A phrase that has surfaced a few times this week from different sources.... 'mindful walking' ....
Just imagine having to plan every step and subtle shift of balance - striving to make an effective movement in the chosen direction. Always taken for granted previously - I find my self with a tinge of envy and jealousy as I see people walking, running, moving around  things I used to be able to do, then reflect on myself stumbling around or finding a suitable aid to reassure the distance to be travelled. I now find myself wobbling from A to B, a walking stick hangs suggestively in the corner of the hallway - I haven't given in ....just yet.

I've not found the motivation to get to the gym this week as I am having some pain in my legs and also picked up a bug from my daughter which wiped me out for a couple of days ....although I did manage to get out on my bike for a good few miles to get some fresh air and keep the legs moving .... it was both invigorating and motivating ; a mental note made to 'do more of this!

This week I've had some very kind messages from friends I've not been in touch with for a while - I really appreciated the thoughtfulness and seemed to help shift a bit of a 'down period'. Ups and downs are to be expected I am aware, in a situation of this nature - one's own sense of being and place in he world under threat.

I can't help but think about the difficult time ahead and try my hardest to live in the here and now and enjoy life the positive aspects of life that I am still fairly able to engage with. Every moment of pleasure or fun is tainted with sadness as I wonder if it will be the 'last time' e.g. a day out/ a long drive/ climb the stairs or similar.

Each morning I wake and after a few moments to get my bearings (nothing unusual here) I stand and assess how things are today......almost expecting a tremendous shift in capability/mobility -although I kind of know that THIS illness is one of a more gradual attritional nature - a battle of will's i.e. how hard can I keep pushing without depleting energy I might need for later in the war? "Today I will do my best ..... that is all ..."
   
I am studying a few hours each day - 'existentialism' as part of my degree study, this keeps me engaged and suitably stimulated for now & I hope to be able to carry this on for as long as I am fit enough. I get the feeling I won't make it to the end (Summer 2016)

But, then again, who knows how long I might have.....

Week + 7 - Acceptance of fate....

This week I felt a serious lack of energy towards the end of the week, as I had done a lot and over exerted my much depleted energy.....everything seems to take so long these days ! It takes me nearly an hour to get dressed in the morning :(

The week started with a fall in the bathroom as I struggle to get in the shower etc and had lost my footing and found myself in a heap on the floor lacking in dignity - but just got up and carried on - now sporting a well bruised wrist and leg. A reminder that things aren't to be taken for granted and to SLOW down.... 

Mid -week I went to visit a very special friend and her partner to look at a cycling project they are working on - aimed at supporting and developing skills of people with challenges either physical or neurological and enable them to enjoy cycling.....
Links to find out more are at :
http://positivespin.org/
http://www.cycletraining.uk
This was a great experience and re-ignited my enthusiasm for getting out on my bike. I've found whilst my walking (motor skills and balance) are difficult - riding a cycle is as easy as ever - so I've determined that the issues I am having is to do with messages not being sent/received by my lower limbs does not affect my balance sensation (a positive :)

I also took delivery of a wheel chair and other mobility aids & so have 'filed' them in the shed until such time as the need arises. I found this very upsetting as my fate was right there in front of me..... a certainty. But not one I intend to meet.

Never the less, the weekend was spent re-charging my batteries watching some rugby etc :)
Sadly my waking hasn't recovered too well and I am finding just getting around difficult without any aids of any sort. Managed to wash the car and cut the lawn (no help forthcoming) although it did take me nearly all day at my pace and ability level these days. Something I find so frustrating....  

I am hopeful of some usefulness from the community physiotherapist when I finally get to see him or her??? In the mean time I will take it as easy as possible but still try to maintain a sense of purposefulness & energy.

I also await the fate of the DVLA as I have disclosed my illness to them and whilst I feel fit/able and willing to drive I am noticing my confidence in this strong skill previously is diminishing - I've decided to give my car to one of my kids soon as I want to hold onto it for sentimental reasons (my mum helped buy it just before her difficulties with this illness).

Lets see what the universe presents this week .....

The organismic self & self actualisation.

Week 6...

It's amazing how we strive to maximise our potential or can adjust to new situations....I think so, anyway. 

Even this predicament I find myself in brings new possibility and learning. I'm finding by refocusing and accepting that I am finding ways to be at peace with my terminal position. I have a window of opportunity to continue to help/support and be available to others in a variety of roles in my life. I intend to do this as long as I am able ..... I feel that life is about experiences shared and being present with others.

I am meeting various health professionals and others to help me understand what I am able to effectively manage in the short/medium term so I can adjust my life accordingly & am hopeful to work for a while longer.
Having had some physical adjustments done at home to help I'm more comfortable getting around and am able to get to the gym a couple of times a week to work on my deteriorating leg strength/co-ordination.

This week involves a lot of form filling out as I need to disclose my illness to various agencies & see if I am able to continue to drive for a while. I do hope so as I feel capable and safe - losing this will severely hamper my independence, I believe I have to have my driving capability assessed and go from there ???

This week brings some new therapy - yoga overview to see if this works for me & looking at a cycling project designed to support people with mobility/brain related syndromes it will be interesting to look at .

I'm also trying to find stuff to do that helps me maintain strength of mind and body , involving self study, reading, painting, research, drawing and even some jigsaws (to help with fine motor movements).

The main symptom of the genetic illness that I currently notice is my balance (ataxia) and poor co-ordination when walking, and a general 'fuzzy feeling' in my head- otherwise I feel like the normal me. I hope this can be sustained for a while as I would like to enjoy this Christmas with my family as it might prove to be determinative for me.

Must go ..... forms to fill out......  :-(

Week5:The road ahead....

Week 5 : The road ahead....

The last week has been quieter in terms of appointments etc. so I have been working on studies, reflective work and planning ahead for the future- I have planned a couple of visits to places and people in the next month or so; places of significance in my life so far that I would like to reconnect with while I am able.

This week brings focus regarding the immediacy and prognosis of the prion disease with visits from professionals -considering the difficult slippery path ahead is challenging and upsetting, particularly when discussing end of life stuff....... and equally painful forms to fill out/complete/evidence and send off - the universe has still not presented a solution to all the bureaucracy and procedure.

I particularly liked this quote spotted this week which nicely encapsulates my current mood/approach:

Fatigue is presenting itself slowly, like a setting sun - I am finding my energy levels are not what they used to be as I constantly look for a balance between activity and rest to maintain the most productive self possible. I've settled on listening and observing myself - which sounds a little weird- and adjusting things as I go; not expecting to have the levels of energy I am used to be able to exert. Being kind to myself....and resting....lots!

My thoughts following today's appointment settle with my children/partner and how they are dealing with this 'stranger' who has entered our lives, uninvited and obtrusively manifesting itself in many aspects of daily life. I hope we all find the strength, support and faith to deal with the road ahead...