Life with MND - 2015 - 5

Catheter bypassing in bed - On the morning of 26^th July the carers came in and had do a complete change of night clothes, although there were 800 in catheter bag, but when all’s well it’s normally between 1000 1300. Then on the morning of 27^th virtually nothing in bag, but all night clothes saturated - I passed urine numerous times and was aware of each occasion - a horrible feeling to say the least! This is all in spite of having a super absorbent nappy on. Plus of course Jean had extra night clothes, sheets and pillows to wash - fortunately the special ripple mattress has a rubberised covering.

I had a new catheter fitted on the 27^th July - it’s now the 12^th of August and to date it’s been working perfectly. When operating satisfactory I’ve no recollection or no sensation of urine going into the bag.

DNR- (do not resuscitate) – it was instigated about 3 years ago, but time has change, and I’ve now reached a stage of disability that I’m virtually reliant on carers for help with all my needs. But I still feel life is precious and I’m not yet ready to die, so I requested if my GP could reverse my DNR.  He has now reversed the order.

What set off my change of thought regarding DNR was I’d a week in hospital mid-March. That was a bad experience, with nurses working flat out they had little time for a person with no communication and I needed someone to feed me - so consequently I was bypassed at meal times. I’m sure the family thought I was sent home to die.

New head rest on motorised chair - congratulations to Alan the engineer from wheelchair care and Janice our Occupational Therapist for their interest, perseverance, and welfare to getting me reasonably comfortable with the new adapted head rest. To try and stop my head slumping down onto the right shoulder. Most days I can get up to 5/6hrs with the rest in place - longest stint at any one time being two and a half hours. The Physiotherapist says I can now hold my head up longer without help since it was fitted.

Swallowing – I’ve no problem with this procedure, but even with my porridge, which Jean has perfected to a smooth solid consistency I’ve got to roll it around the mouth 3 or 4 times before swallowing- its as if the message is being delayed from brain to action, but then I suppose that’s what MND is all about.

A hard thing to give up- is ‘my controlling nature’ which has been a strong personality feature for as long as I can remember. But now comes the realisation that I can no longer be in control of my own life, with Jean and a number of carers tending to all my needs. All will say that if I am not happy with any of their procedures I can still get my point across - yes it appears I’m not going to give up till the very end!

Life with MND – 2015 - 4

David Niven actor  - he died in 1983 with MND – I once read that to signify things were ‘OK’ he always gave a ‘thumbs up’. I did the same until the beginning of this year when I lost the mobility and dexterity of my ‘trusty’ right hand, so I can no longer give a clear and precise ‘thumbs up’ – this has been a big blow to all who tend my needs when the sign of the thumb meant I accepted the present condition.

Breath Stacking in bed - the Physiotherapist taught me this technique whereby you exhale to your limit –then inhale, in three separate stages until lungs are full as person can manage (expand the chest but try and avoid lifting the shoulders) then hold the breath for as long as possible, then open the mouth and let the air out in a sudden burst - I also do other exercises in bed, which includes ankles, legs, hips, and pelvic core strength.

 To help me sleep - same procedure as above, other than this time I take in a steady intake of breath - without the stacking, when the lungs are full; hold the breath for as long as possible until I get a ‘giddy feeling’ again open the mouth and let the air out in a sudden burst - ensuring the lungs are as empty as possible. 3 or 4 occasions with this exercise helped me sleep in 2013/14 when I could count up to 7 before the lungs were full. But by spring of 2015 I could only manage a count of 5 for full capacity, it’s now July and only get up to a count of 3 -- so now I take Sudafed and wear a nose strip in bed, which aids breathing.  Sudafed is not recommended by Doctor, but having no problem with breathing throughout the night is so important to me. I’ve no problem breathing throughout the day whilst in my chair.

 Memories - I recalled my parents had a picture of an owl with the caption:-

A wise old owl lived in an oak,

The more he heard the less he spoke,

The less he spoke the more he heard,

Why can’t we be like that wise old bird?

It’s funny how the saying meant nothing in the past, but now with no speech it makes a lot of sense. I occasionally get frustrated and feel if I’d speech I would react immediately, but now I sleep on it and by next morning I’ve calmed down and find it’s not worth effort and bother of persuing it.  After all anger is a condition where the tongue works faster than the mind - and remember silence is sometimes the best answer!

Life with MND – 2015 - 3

I hope I’m not boring my reader’s with the ‘I and my’ attitude, but it’s me trying to relate my thoughts as disablement trundles on.  To set my feelings down in print acts as a substitute for the lack of speech, so from now on readers can expect more of my musings.

Keen interest in others

Visitors may well think I’m uninterested when I doze, but nothing is further from the truth – lots of close family always say ‘Gordon will know’ it’s often true, because I’ve no option, but to be a very good listener - my brother Allan is one of the best for delving into what his past week involved and telling me.  I’m sure at times he thinks it’s a bit futile with very little reaction from me — no way Allan I have appreciated knowing what you’re week involved!    

Community alarm

I’d a brief discussion with Jean and we decided to surrender our alarm as the finer motor skills of my hands can’t operate the fob--  I’m now thinking of getting a key safe installed by the Council -- where if anything was going to happen to Jean then the carers that come in at 0700hrs could let themselves in.

Mum/Dad and brothers

Mum and Dad had three sons Ian, Willie, and Bob, then there was a ten year gap before Allan was born and me two years later in 1937. Mum would have been 37 when she had me —  for a home birth at her age that must have been very risky, but I suppose in that era unless severe complications then hospital wasn’t a option. I remember Dad saying they lived in a house with a compacted earth floor and when they played marbles they used the heel of their boot to make the hole for the game (for locals familiar with the Doric it would be doolies and kyppy for the hole)

The five brothers, in spite of the ten year gap and Ian spending all his married life in Newcastle we were all very close. The four remaining brothers lived in or around Elgin, but when we all got together including the families it always turned into  a night of hilarity and camaraderie – laced with frequent ‘drams’ of whisky for the brothers! –And always ending up with a rollicking musical evening involving all the families – we all were ‘likable drunks’ and non-aggressive! Ian and Willie died in their late eighties and Bob in his early eighties, so they had a good life.

Aye, the past memories may well be the basis, when I recall the happy times, for my acceptance of ‘this hellish disease’ bestowed on me. Yes we’ve all to go our different ways, but it can be hard sometimes!!

 

Wheelchair scuffs

In June we had our first really serious attempt at painting over wall scuffs and disguising hardwood doors and surrounds since 2006. Overall I’ve been pleasantly surprised with the outcome.  Carers are now heavily involved in transferring me from bedroom to bathroom etc.  It shows they have a healthy respect for our home as well as my dignity and overall welfare.

Life with MND - update 2

continued ....

Fluid intake through PEG

For past month or so my fluid level has been just over 2 litres, which I’m happy with, - this does not include soups, yogurts and the likes.

Eating through mouth 

 I’m always looking forward to a good breakfast of a plate of porridge made with oatmeal and plain yogurt followed by cereal of ‘special K’ bran flakes and raisins. Then at around ten I’ve a banana, stewed apples, muesli, and small piece of chocolate. Lunch is around 1200hrs and normally consists of either soup or salad and a pudding. Jean ensures that all my meals are of a texture and consistency easy for me to swallow.  Lunch is my last meal of the day as about a year ago I was bothered with reflux in the evenings and decided to stop the meal at 1700hrs.

As far back 2003 when my tongue lost the ability to get the true taste of most meals I eat are pretty tasteless—salads are ‘spiced up’ if accompanied with a dressing of chutney—sweet onion (my favourite), not too hot chilly, or if any other meals a curry sauce/ hp, sauce. Oddly enough I still get the true taste of bananas.

Whilst chewing I have a tendency to bite my lower front lip.

Life expectancy

I always thought I’d die of respiratory failure, but being a creature of habit that monitors him self regularly, there has been a slight deteriorated in breathing over the past two years.

I was in the hospital for just over a week in the spring time and when I got home they had taken me off all blood pressure and cholesterol medication—so I presume the heart is sound! Then the MND area specialist visited and took my oxygen level and heart rate — the former registered 96 and for a person of 78 was quite acceptable and heart rate was 73. So if nothing unforeseen happens I may well last into my eighties — I feel it’s a daunting challenge for both Jean and me.

The things I really miss especially whilst in bed

On the whole, it’s simply the lack of movement, and isolation - when the carers put me to bed I’m fussy to  how I want positioned – after all I’m the one who has to spend ten hours in bed. It’s a combination of strategically placed pillows cocooning the body. After the carers have gone Jean does the final tweak of pillows and arms/hands. It would be so nice in the morning, after an acceptable nights sleep to stretch; scratch any body parts/head, or rub eyes — but I don’t have the ability to do any of the things that normal humans do automatically.
This is where my basic knowledge of yoga comes to the fore whereby (if persistent enough) I can block out the urges and concentrate and transfer the mind to more positive and pleasant thoughts.

An update from Gordon for 2015

Living with MND-2015

Well this is my first attempt at compiling my story this year; suddenly in May I seem to have rallied regarding typing and use of the ‘lightwriter’

To date this has been a dark and challenging year with the left arm/hand having to be lifted and placed by someone and the right arm/hand also needs assistance to reach my rib cage. I don’t know why after four months of further disablement I should get this positive mind set, but long may it continue.

Catheter

I’ve had numerous catheters fitted but all have had the problem of bypassing the tube until the most recent one fitted, which seems to be working fairly consistently: fingers crossed it goes on working!

Jean

Has finally been relieved of putting me to bed on her own. Now when carers come in at around 8-30 in the evening to change me into pyjamas they put me to bed. It means an extra two hours in it, but if that’s what it takes to ease Jean’s work load, then so be it. I’m virtually in one position until the carers come in at 0700hrs the following morning. It can be a long night sometimes, but overall if I get comfortable when carers put me to bed, my sleep pattern is quite acceptable.

Euthanasia

In an earlier installment of my story I said if ever I felt that my life had reached what I considered unbearable I’d opt for euthanasia.  In the past year my disablement is now so severe that there is no way I could function without constant care. Make no mistake, the deterioration since diagnosed in 2005, has been ‘a long haul’- and am prepared for death whenever, but I’ve a stronger urge to live.   

I’ve accepted, and learnt to cope with what I can’t change, - so could it be that there are no conditions in which a person cannot become accustomed to - or nothing befalls a person what is in their nature to endure. 

Carers overall

Jean is my main carer, she’s on call 24/7 - although there is a person who comes in for sleepovers two nights a week and a Marie Currie nurse who spends one night to give Jean an undisturbed sleep. Unless anything unforeseen happens, normally, I’d call the carer once to change my position a night.

Communication in bed

I’m at my most isolated and vulnerable- with my only source of communication with carer upstairs- they have a baby alarm close bye. So if I can muster a feeble screech- hoping they hear me. I can’t position and operate the ‘lightwriter’ in bed - plus no specks on to see letters!

My communication frustration with carers – especially Jean

Yeah, having been married for over 53 years it’s very hard for us both, I would say it’s harder for Jean to cope with my condition and as I get more disabled my needs on Jean’s time more necessary.  We both have different ways of dealing with my illness - me it’s been loss of ability to communicate with all carers, but especially Jean on these occasions when I get frustrated which can very easily lead into agitation which can then very easily turn into uncontrollable shaking of the body.  Called CLONUS – ‘a violent confused motion of involuntary rhythmic muscular contractions and relaxations caused by neurological conditions.

Then of course I’ve the Councils very capable team of carers that tend to my ablutions, showering, toileting, dressing/undressing, and getting me up and out of bed. I can get up to twelve regular carers all with their caring qualities, and characters. But all are dedicated making me feel at ease and I’m sure they contribute a long way for my still zest for life.

to be continued......

Note from the techie - Gordon is finding the updating of his blog very difficult, but he is still determined to do it. He asked me recently how many hits he had to his blog, he smiled when I told him. He is still tickled to know his musings are being read across the world, so please do continue to check his blog - each hit helps keep him going. If you cannot keep checking back, please do add your email address to the 'follow me by email' box on the main blg screen, and you will receive an email when the blog is updated. Regards