Living with MND - 2015 - 6

Am I becoming a recluse?

It’s just I haven’t been outside this year. OK, the weather hasn’t always been conducive for me, as like lots of reptiles I need warmer temperatures before I venture outside - otherwise I just stiffen up and can’t move. Plus, now the hand that operates the motorised chair no longer has the finer motor skills to manipulate or operate the ‘joystick’ that takes me up the rather steep ramp into our adapted deck - mind, I could always get a battery winch fitted.

If the truth be known, I’ve no inclination for going out - whether it’s the body slowly shutting down, I don't know, but I just feel the effort and bother is not worth it.

Procedure for getting me into bed 

This precise and detailed procedure is so important. First, with very restricted movement for the 10 hrs spent in bed it’s certainly in my interests to get as happy and reasonably comfortable as possible before the carers leave. Plus, if I’m comfortable it lessens the chance of having to call the carer on duty during the night. If I don’t call them they will usually pay a voluntary visit during the night, just to check that I’m OK.

But time is changing things - a phrase I’m sure will be used often in the future! In July was a month where I’d no need to call the carer, whereas by mid-August I’d developed a gnawing core pain in my left ankle and knee joints. Exercising in bed certainly helps relieve the pain and I’ve started taking 2 ibuprofen tablets before bed which seems to have solved the problem meantime.

The Blog 

It’s amazing the capabilities of the computer and internet. On the 25/8/15, our page viewings were 3,596,  but more to the point this number includes world wide coverage including the following countries - 

United Kingdom -1806 views

United States - 892 views

France - 217

Russia - 193

Ukraine - 98

Australia - 48

Germany - 38

Canada - 31

Netherlands - 18

Romania - 17

A big thank you to my niece Carol who ‘setup’ the blog – without her help and enthusiasm it wouldn’t have happened.

World finance regarding China

As August draws to an end, the finances of the world is in turmoil, all because China has taken a rapid downturn in it’s sudden growth over the past 2 years. This leads me on to a story of some 30/40 years ago I must have read it, or heard it somewhere - that the world is like baking in an oven where countries become the items in the oven. The European nations were too white and under cooked - all the darker skinned nations were over cooked as they were too dark - whilst the Chinese were cooked to perfection by their skin colour and would ultimately rule the world. 

So in some ways it’s come to fruition - we’ll watch with interest for future developments. 

Note from Carol - I am happy to contribute what I can to this blog - but a big thanks needs to go to all our readers -- please do try and tell your friends and family about this blog - the more readers the better - I am quite sure we would all love for the blog to continue for as long as possible, so keep reading.

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!