Week +17 : Getting 'through it'.....

Thank God that's over......

 I've struggled over this Christmas period, hearing stories of what people are planning over the next year or so, their own lives and continuing adventures as mine seem to be coming to a sad premature end.... I was really so pleased to see everyone , but every one of these encounters (normal to others, but tinged with sadness for me) and their accounts, prodding me about my own slippery journey into disability and eventual demise....it's been tough, really tough.

  This Christmas, for me, has been all about struggle... struggling around the shops to try and get some gifts, struggling doing the food shopping, struggling to carry things from the car to the house, struggling to help with Christmas dinner , struggling to put the bloody socks on that Santa brought me -  the struggle frustrating and debilitating.....

  I thought some 'normal' activity might help.... a trip to the pub on Christmas eve!!!
(left me feeling less than useless, a seat had to be found whilst others able to stand and socialise ...I felt noticeably different to the others and struggled with this, once again reminders of this protracted death everywhere), hardly being able to walk out of the pub (not beer induced) but product of a long walk earlier ( around 200 yds )       :-(

Struggling requires energy, focus and desire.

I'm not liking the struggle this illness is bringing.

  A trip (literally), earlier in the day to the Boston 'Stump' -church did allow me some peaceful/tranquil reflective time; thinking of ALL alive or otherwise ,lighting a candle in their memory before gathering myself for the festive celebrations. Also asking for a prayer for myself to help me through the difficult time ahead. I found some clues for myself in this environment.

Peace - quiet - tranquillity - acceptance - hope - surrender

 
  As I sat watching my family on Christmas day opening presents and the usual activities that accompany my family Christmas I was left feeling empty, emotional and surplus to the situation, I have held this feeling throughout -  wanting others to enjoy their time (as normal).

  I hoped a visit to the coast on Boxing Day would help. A nice catch up with family - however,  a tantalising stroll on the beach too much for me to contemplate - again I became a bystander, so sad for me as it is my favourite place, a place of connectedness with raw nature, a great place to reflect, ruminate, plan and re-energise - I really need to find a way around these difficulties opting out of them all seems premature and would be quite damaging psychologically at this stage. Maybe selective and appropriately chosen will be the way forward.

  As Sunday evening approaches I've about had enough of sitting around inactive (I can do that anytime!) I'll be pleased when tomorrow comes and I can start getting back into some productive activity, study/ some work and helping a few people this week. I really miss interacting with like minded & connected souls..... hopefully this week will help start this re-connection as the world comes out of its seasonal pause. I've been doing anything to keep my mind stimulated but have felt obliged to enter into the customary loafing around watching TV and watching people on their variety of electronic devices. A revisit to some meditation and self-care has been a much needed resource for me to survive the last few days.
Who'd have thought a time of supposed giving and good wishes could bring such difficulty ???

I've decided to indulge myself in my Take That DVD from Santa as I write this blog this eve..... the big man has good taste !!

Below are a few thoughts that have 'kept me going' and focused ,so I thought I'd share them with you....

Happy New Year to you all:)

Week +16: Countdown to Christmas

Seasonal goodwill....

It's a strange experience for me this Christmas; where as I feel and see people apparently drawing together at this family focused time - for me the seasonal period is full of paradox.
 Drawing together at a time when I feel separate and different, excited anticipation versus my humble reflective thoughts. Sad, fun, happy, reflective, emotional, caring, kind, grumpy would sum up how I'm feeling ...
  Clearly it is a time where I feel it is difficult to enter the vibe of the masses and so I choose to spend some time individually with some special people I have been close to over the years. 
 

So a day spent in the coffee shops of Boston was the order of the day on Tuesday, with some great catch up time with friends with a little shopping in between, to show willing.
The quality time spent with these friends was so valuable to me, slowing down and engaging 100% with others, lovely times:)




  Much of the week was spent attempting to complete some academic work for my degree, I find it difficult to work on this stuff in large blocks so have needed to adjust my time and effort accordingly, not only the tiring aspect from the concentration required, but also the loss of dexterity and feeling in my hands causing some greater concentration to make things happen in the right order (particularly typing) making the whole exercise more difficult than it should/needs to be . Nearly there with this - so one more push should get it complete. I can then consult, reflect and work out the next steps regarding this program. 

  The end of the week was punctuated by two visits to the cinema to see the new Star Wars movie; impressive and good fun both from content and social aspects. (food n drinks before/after) . Great fun and great companionship from those I had the pleasure attending with.

 

The weekend brought a heart-warming and humbling local fund raising event that I managed to attend (in part). Wonderful people ; a community of caring, kind and inspiring people all joined together to support others in the Boston area. I truly felt a sense of 'giving to others' in the proper sense, not necessarily in a monetary sense, more from the giving of time and effort to support ease the pain of others   - got me feeling warm, fuzzy and Christmassy !!



On the health front, things are pretty stable at the moment and a visit to the GP on Monday helped organise some minor issues I've been having, and some great support in trying to help my short/medium term stability.
  A referral for some hydrotherapy and a different gym identified to help keep the legs working as long as possible and help alleviate some of the pain-this should start in the new year -so that feels progressive. Some other appointments scheduled for the new year also in place, so I'll be left alone pretty much until then - which is good for me, to have some 'normal time'.

  On Sunday I hit a bit of a bump with a copy of my recent clinic tests copied to me received in the post. It has some comforting observations of normality enclosed; in that my broad health and decline is fairly consistent and not got much worse than anticipated  (phew!) with the exception of motor skills/co-ordination (walking, balance and the other things I have noticed and described myself, previously).
There are some technical results I'd like to understand so I'll ask the experts sometime over the next week or so....


 ----------------It has been a week filled with textured and varied experiences-----------------


A couple of things have come into my awareness this week, seen at various points- and have stuck with me.....

 
'One day you'll be a memory for some people. Do your best to be a good one.'

'Courage is being scared to death but saddling up anyway.'

And finally:


'When something bad happens you have three choices:

1. let it define you
2. let it destroy you
3. let it strengthen you   '

I'm going for number three ;-)

 

Merry Christmas one and all.....

Week +15 :Hitting the 'psychological wall' followed by unconditional positive self regard.

The slow creeping sound of inevitability.....

This week started much as last week left off ..... with a seemingly insurmountable sense of hopelessness - beleaguered by a sense of 'the struggle isn't worth it, why bother' and generally feeling sorry for myself  .... I found myself in a dark, lonely place......isolated and scared of what the future holds.

'The wall' - possible to navigate ? round, over, through.....

A wall of inevitability stopped my proactive, positive 'ish' energy in it's tracks and this unusual state stayed with me until Wednesday........

I think the last few weeks caught up with me psychologically..... too much contact with this nasty disease/death and all of it's untimely baggage. I'd had the CJD meeting in Birmingham, various home visits all probing and prodding my certain fate and ending with my visit to London for a clinical assessment /tests......  

Now I reflect back on it - there's no wonder my 'tank had run near empty'. 

I really have had to lean on close family and friends over the last week or so to enable me to 'keep pushing on'  ....I'm so grateful for their support - I think I would have caved in if it was not for this. Never before have I needed this......thank you :)

Monday was a difficult meeting at home with three professionals looking at the feasibility of adapting my home to create more downstairs living space at the same time as creating a downstairs wet-room, planning ahead for when I can no longer get upstairs etc. Whilst this meeting was necessary for my future; in the here and now it was very difficult to contemplate these difficult times ahead - it was all so very real now. Budgets, payback, worthiness etc were discussed by all and is my case a priority when funding is tight and other people may be more of a priority. All very difficult to be part of both subjectively and objectively. I gained a sense of 'me' being discussed as a 'thing' rather than a person at times, a mightily jarring experience - especially as I hold every individual in such high regard, I felt somewhat devalued and 'missed'.
Until of course I decided to inject my honest opinion - pointed, strong but respectful and objective..... I hope the message got through to these planners, financiers. I must ensure the best possible end of life situation for myself, whilst maintaining as normal a home as possible for my family (my goal !)

Tuesday was a day of grey vagueness.....

Until the evening when I was feeling more purposeful as I began to pick up mood and pace wise.....starting to feel like re-engaging with life again.

This more positive energy seeped through into Wednesday with a very positive pro-active visit from my community physiotherapist - an assessment of my mobility resulted in a score of 50/56 - (good) I was told, even though the strength, balance and movement in my legs results in poor walking and poor sense of balance - there is good movement etc.
The problem being my legs seem strong enough to do 'stuff', however it is the messages from my brain to nerves/muscles that is failing resulting in this difficulty. Some exercises were given to me to do at home to enable me to help myself best I can. Also a referral for hydro-therapy (low resistance work in a pool)  much appreciated , to start ASAP and boost my mood further.

I still await commentary form my recent London clinic visit to benchmark my current health/situation/prognosis, I am happy I am able to engage with this news appropriately - keen to understand my cognitive function particularly, so I can plan the next couple of months ahead at least. Some tough necessary decisions/conversations need tobe made and had - so reflective thoughtful process commences.....

By the end of the week I find myself 'cleansed' of CJD related stuff and able to focus on more enjoyable matters- thinking about starting Christmas shopping/preparations :)
Some catch up time with friends, if a little different  from the usual - still possible.

A few social catch ups (nothing fancy) at the end of the week helped me detach the closeness of the prion disease a little more & able to take more interest in the world outside my own phenomenology.(dictionary?)

Looking forward to a better, more positive week ahead............ 

Week +14: Sadness and isolation brings about focus and determination.

A sad lonely weekend as I 'waited' for the new week to start and my scary appointment.
With little company or stimulation this weekend I found myself absorbed in thoughts regarding the prion disease - no doubt the imminent visit to the clinic/hospital causing me unease and internalised stress.
I tried session at the gym for an hour or so , but struggled physically & couldn't find the focus to really get into it , but stuck with it. The fatigue of an hour of gentle exercise really takes it out of my legs' ability to carry out the task they were designed to do. I'm feeling the gym work may have to stop as a swap for energy for general energy for mobility.
I'm keen to get the appointment out of the way and get back home on Wednesday so I can get focused on more vibrant and satisfying matters.

The cohort study proved to be challenging - as much in getting to the venue and around the hotel as the tests themselves:
A drive to London (me as passenger)was facilitated by a great service NSL ,manned by volunteers!!  whereby they drive patients from home to hospital & return, I had a two night stay in the hotel either side of a full day (9-7) full of tests , tests including various physical, cognitive and neurological and a full physical examination ...results TBA but some feedback was positive eg. regarding my cognitive ability, there is a clear physical decline that is affecting my passion for life.
The day built to a crescendo.....will a one hour full body length MRI scan - both uncomfortable and claustrophobic.  
I left the hospital having made the decision not to return again due to the strain, physically and otherwise - the intervention can continued to be supported as the team can come and visit me at home for a general assessment - seems like a more suitable option now.

Whilst in London I was able to catch some time with two of my children (now adult form!),as they came to see me...this made the trip less painful and certainly helped me in remembering my broader role as father and not just patient. I was thankful to see them both as their location and lives mean that we don't get much chance. They were both seemingly doing just great :) Proud and humbled by them both..... on their respective journey's.

Friday rounded off a 'prion disease focused' week with a lovely trip to local hospital to see my speech and language therapist- whilst there are some minor issues, we felt there will be no need to visit the dept. again until after Christmas, as I do not seem to be having too many issues here. Difficult questions posed by the therapist really made me think about the difficult experience ahead - not easy ... 

Positives >>>>>>>>>>>>>>>>>>>>>>>>>>>>

My next focus (goal) is to make it to see Star Wars VII, I have tickets in advance and find myself genuinely excited at the thought of a new instalment in this story, who said adults can't have fun !
I think I like the theory of these films - not just because of the literal story but the theory and depth behind the jedi ( of which I am clearly one).
Two weeks to go......  



Today (Saturday) I took great pleasure in meeting one of my good friends at a pottery studio where she creates wonderful one-off pieces, this gem of a place harbours great talent and work created by the group here. I was given the task of creating something from a lump of clay..... I had an admirable stab at this and was reminded how much pleasure and therapy I get from creative work. Unfortunately I forgot to take a picture .......
BIG THANKS :)   
Note to self to pick out as many of these sorts of activities as I can pottery seems another good one to add to the schedule.

Next week is a mixture of stuff for me some more (YAWN...) appointments to do with this disease and the impact it is having in several areas of my life (home adjustment plans, physiotherapy) ....

From a progressive viewpoint I am making an attempt at returning to work on some short voluntary shifts, hopeful of a more permanent go at things in the New Year while I still can (even if in a very limiting role) and a focused effort at writing an assignment for my degree course - something that with all the other distractions in my life I have been struggling to apply myself to.

We push on.........

Week +13: Feeling stoic

Hard work.....

General life feels like quite hard work at the moment ; everything takes so long - even putting on a pair of socks requires physical effort and focus, everything must be done 'mindfully' as many 'automatic' movements or tasks often have to be done now with greater concentration - all of which take away from my 'daily energy bank'.
I feel a general background dizziness now and pins and needles in my hands similar to those that I used to feel in my feet and legs - at the moment making typing/writing more difficult.
I am determined to work with these difficulties,adapt and maintain my energy for the focused events that punctuate my days/weeks. Saving energy where I can to enable me to function acceptably when I require.

This week was much better for me, with less impact from professionals dealing with my long term care I found I was able to re-engage with 'normal' day to day life and managed a few hours back at work helping with a new exciting project. I hope to do a few more hours each week and try to get all my professional health appointments more compressed into a more workable, less impactful timetable. 

I am mindful that I need to spend a more appropriate amount of time on self-care, carrying out exercises prescribed by physiotherapist and better exercise for my aching legs - something I have not paid enough attention to this week. My current issue  being that my days are short, too tired with less that 8-10 hrs sleep and the slow pace at the start of day makes for a less full day; but that's how it is for me now :-/

 As this week ends my thoughts turn to a trip to London next week; not of the tourist kind, but a trip to the U.C.L.H. and the specialist clinic monitoring my condition/situation. A three day event with all the travel and difficulty involved with this activity right now. Tuesday is the main day of focus where I undergo tests cognitive ,physical and otherwise. The main aim to get an understanding of my  (I would say) current decline. The information also used as part of research and general further understanding of this neurology. I am convinced that the information gathered from the individuals involved in this study hold the key to a therapeutic solution & as mentioned last week a trial approach to therapy has been evolved, although unable to offer this to people in a situation like mine as yet.
As  I am unable to use public transport due to distances to walk, stand I am blessed with a door to door travel arrangement for this journey facilitated by the health service - I'm thankful for this & would be unable to make the journey with out this provision ---- thank you :)

I'm finding it hard thinking about Christmas as I know it will be my last coherent and possibly physically present one - the temptation to vocalise this and make it a 'big special one' in some way .But that's not really my style - a more humble approach feels more like me. See what happens and trust that the right thing will evolve.
Christmas shopping brings anxiety on many levels - finance, ability to carry out the shopping -stumbling around/access etc, not in the mood......
I'll wait a couple of weeks and I'm sure I'll get it done when the mood/opportunity takes me.

For today a restful day is in order as I feel the challenge of the day will be the new Spiderman jigsaw, courtesy of a good and much respected friend :)

Week +12 : Facing the future

 

This week has tested my strength, resilience, hope, faith and sense of self massively ............. forced to focus on my ever decreasing life cycle.

Appointments with many support professionals (seven in all) at various points in the week, varying from advance care plans to hospice intervention/type/needs to physiotherapy. Often requiring me to focus on the long term difficulties I face, (which I appreciate I will) but I'd rather do it in my own time and at a 'convenient' time, not these 'enforced' questions and answers..... " so do you think you will have a bed in your living room when you can no longer get upstairs" or " have you thought about moving?" - away from my family to a hospice ?? or perhaps "you could move to a bungalow away from your family" " would you like to die at home or in a hospice?"

All of which explorative questions I am sure meant with good intention...... but shattering to the individual on the receiving end (me).
Further questions probed at physicality and symptoms - I'm more than aware of where my issues are and do not feel the conversations are helpful to me in retaining my positive, robust approach to life.
These conversations are necessary for the future planning and immediate organising of relevant help, but still equally painful to have. My process dictates I'll talk about this in the new year once I've been able to enjoy my last coherent Christmas/New Year. 

I did however, feel great strength and energy from the physiotherapists advice/support and guidance - some useful exercises developed and a very caring/supportive nature.
I was pleased to end the week with this - it has renewed my focus and determination. 

I was thankful mid-week for a treat ..... my cousin had arranged a day at the local health spa
in Belton Woods....

 - so thankful for this ..... a swim, steam room, massage (expertly done) and a pint of Guiness such a welcome respite from the upsetting and challenging events of the week. Helping gain some momentum for the end of the week.... and of great benefit to my aching body :)

 

The end of the week ; - a trip to Birmingham to the 20th family day for the CJD Support Network - massively relevant and suitable to my illness.

I met several old faces and some new - all with various relationships to this illness- it was a difficult time but engaging and necessary for me at this time. I was really touched by one 'story' of a family dealing with this illness themselves; I found myself humbled and thankful for my own situation - although mine is difficult ,certainly not as painful as the one described to us. Heartfelt best wishes go to these people.....

One presentation touched on a therapy that has been developed to treat this disease, however the £13million funding need prevents the drug being trialled further for my particular situation at the moment.

It is hopeful though, that it appears this may be available for others in the next ten years or so, I was pleased to hear that it may help others ..... but sadly not in time for me :-/

 

This week I'm more able to leave the horrible week last week behind and focus on a few hours back at work and get into writing my assignment for my degree course without too much distraction - lets see how we go :)  

 

Having read this blog back myself it sounds sad ..... I'm sad, yes of course, but full of energy, zest for life and focused on supporting others at the moment, so I don't dwell on these things and am quick to move on - there will be plenty of time for upset later , but for now there is much to be done .....

 

 -----------------------------------------------------------------------------------------------------------------------

As I close this week:
I'm reminded this week of my intention not to be defined by this illness and found this post on facebook relevant and energising :)

 



 

Here's some other affirmations/quotes that have caught my eye and emotion this week.....

 

Week + 11 : Deep breaths

Deep breaths.....

This week I felt fatigue on a grand scale towards the end of the week. A busy week had taken it's toll as I felt exhausted and needed some down time. Having completed my first block of study for the final year of my degree I felt a sense of achievement, but also left wondering if I'll be healthy enough to make the next 'leg' due to commence in Feb 2016;I consider the only way to find out is to keep going and find out at that point.
That's the difficulty with this illness, knowing what the prognosis, symptoms and outcomes will be, but never sure when each decline will occur.

I know I mention my walking a lot, possibly due to the fact that once I cannot, I feel my sense of self will be affected massively. My legs and hips are causing me a lot of pain and I hope to discuss this when I visit the specialist clinic at the end of the month. In the mean time I'll do my best to get around 'acceptably'.     :(

This week brings several appointments related to the prion illness, a capability assessment at home on Monday, a occupational health visit, a first visit to a local hospice to discuss care requirements/support/service offer and finally a visit from the community physiotherapist - the latter I am hopeful will bring some helpful routine/exercise suggestions to aid my mobility. I am happy to work hard at this to help maintain strength, mobility and ability as long as possible.

A strange melancholic feeling washed over me on Friday - perhaps stimulated by seeing and hearing about others out enjoying life, while I feel restricted by this damn illness, too tired and agitated by painful sensation to join in . I have to pick my times carefully to do these things and even then unpredictability with ability/capability can influence these plans. I reflected on this a great deal this weekend and have to find acceptance with my restrictions and choose carefully where and how to invest my energies. Acceptance and admitting defeat are important at this time....

Finally, I couldn't end this week without reference to the awful events in Paris and the horror that unfolded for these unfortunate people affected by such cowardly, shameful acts.....my heart and prayers go out to the victims and the community there and around the world; these atrocities always seem to bring us closer for a time and then people drift back into normal everyday stuff - let's hope we all remain strong and this evil force can be neutralised.

Best wishes to everyone .... hope you have a good week.

Week +10 : Stability and refocusing

Transfiguration

 

A busy week ends & I have found myself able to re-connect with 'normality' much better as the immediacy of my illness and the prescribed death seems a much more 'soft subject' as I am finding great peace and acceptance with my unfortunate situation.

I am filled with an energy and zest to carry on doing as much as I can while I can, to do good and have a positive place in this world. This 'energy' is driving me forward in a number of areas & I hope to return to paid work shortly (physicality permitted).

This week saw a return to the gym after a couple of weeks away as I was finding it difficult - however, I  have adapted my approach and this seems to be better - gentler and now not wearing out my limited walking capability so much. 

A catch up with a very kind and precious gentleman on Tuesday was a wonderful re-connection with a previous relationship for me; but someone who brings great comfort and kindness for me. A brave soul who has reached out and offered a hand of support at this challenging time - so powerful and valued ... 

At the end of the week I have had the privilege of attending a retreat at Ampleforth Abbey, entitled 'Living well, dying well' and whilst some pain was found in reflecting about my own situation, there were some truly inspiring and comforting moments to be found. The retreat is advertised as : 

'This retreat will focus on aspects of death, not so much for those who grieve, but for those of us who wish to follow an invitation to always have death before our eyes. This is not a morbid thought but a reminder that how we live each day will reflect how we will face our final day when it comes. It is a retreat about hope and the celebration of life (edited)

 

I had my cousin as a companion there, which was a new experience, as I have always attended alone previously. It was great to have a psychologically connected companion and we spent good times playing board games, eating locally, sampling goods produced at Ampleforth, reading and sharing thoughts/ideas. No TV/ Wi Fi but more valuable conversation, human connection and laughs along the way :)

Walking was very difficult for me in this hilly location,  directing me to think more about using acceptable aids to assist my mobility - not 'giving in' , but accepting that struggling is not much longer the best strategy when simple help hangs in the hallway in the shape of a kindly presented 'modern' walking stick. I am hopeful a meeting with the community physiotherapist next week will help me maximise my wasting legs.

I use the term transfiguration in my blog this week not in its biblical context, but as a symbol of a 'marked change in form or appearance'. I feel the experience I am having in dying is organismic, releasing and  refocusing my energy/priority enabling me to place my energy into a more engaged way of being, more interested than ever in the human potential and fascination with what makes us what we are.... guiding me into more helping relationships and evermore emotionally available for others.

Faith plays a key part in my current process; not worrying about what lies ahead , but that I will have the strength of body and mind to cope ,with the support of close friends/family/professionals and my community. Faith that when the time comes I will know what to do & be guided accordingly instinctively and spiritually.

Some keynotes from this weeks retreat are detailed below:
Non religious observers may wish to look away now! however there were some deeply resonating spiritual messages within the religious context for me - observed as common and not unusual to the individual but part of the human condition ;

• Courage is not absent of fear, that is denial.
• Fear is a natural human emotion
• When the moment of suffering comes, a surrender is require, a leap of faith....
• There is nothing like suffering to make one feel lonely and isolated
• People are desperate to find a way out of their situation
• Better to live in and appreciate today rather than worry about the past or future
• How do we reach out to others for support when we need it, some challenges cannot be faced alone
• Helping others also helps us to receive support
• Where you are; do what you can
• Do we have the eyes to seethe divine in others, nature and the world around us or just 'passengers'
• Look anywhere but find true love and peace within
• Live life to the full, have faith and death holds no fear for us.
• Love is stronger than death
• How can I live it? ..........  one day, one moment at a time

One final thought from the retreat that really stuck with me; ' letting go of the things you can no longer do and embracing with all that energy permits what you can now do'.....

I hope you enjoy living your week......I fully intend to :)

 

 

 

Week +9 : Moving on....

Moving on....

This week I finally felt I was able to make some sense of things and start to feel more positive about the future.

Most of the initial appointments with my team of professionals (involved in supporting my short and long term needs) have taken place and I now understand what help is available and how this can be tailored to me at each stage of the illness.

I hope to return to work a few days a week, while I still can - once the remaining appointments I have are completed and I gather up my strength, motivation and spirit for another go at life.

While I can - I am certain I still have a great deal of positive energy for the world before I have to retreat to a 'smaller place'. This energy propels me to do more & help support others where possible - I don't feel ready to give in to this disease yet. 

I am thankful that the only support I seem to need right now is physiotherapy to help maintain leg strength while I am still able to walk ...as I've noted before my leg strength is severely degenerated as is my muscle bulk - I am determined to make Christmas without giving into the pain and difficulty I have walking etc. Cycling and exercise is helping but equally tiring. I have to remain mindful that fatigue is a big part of this illness for me at the moment and rest/recuperation is vital. 

Emotional support comes from close friends and family (some) who have engaged with me in this journey and are helping in any way that seems appropriate.  My heartfelt thanks are with my cousin who does a great deal to support me :)

This week brought confirmation of a blue badge (disabled driver) which should make the accessibility easier for me, whilst I am still driving. I think I will be due a drivers assessment soon & this will determine driving skill/ability/safety.... I'm hopeful it will be ok as my driving seems ok - to me :)

My studies for my degree are focused on a comparative study of approaches to counselling and psychotherapy - I'm drawn to existentialism as this has formed part of my life for several years now - I am finding the discipline of self- study difficult with all the challenges I have had recently, however with this new more positive vibe I am feeling from within , I feel I will be able to approach this with more vigour now. Lets hope so - it's soon assignment writing time :-/

Anyway, the week ahead brings a mixture of activity from study to a retreat in Yorkshire where I will be reflecting on living and dying; in a group facilitated by the monastery there - a peaceful and welcome space for me to think about the future....

 

 

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...

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 :-/