An article about Gordie in the MND Scotland Newsletter

This is a link to a document in the MND Scotland Newsletter, Aware, from Winter 2009. See page 9 of the newsletter for his story.

The newsletter is worth subscribing to, or just checking out on a regular basis on the MND website.

http://www.mndscotland.org.uk/wp-content/uploads/2011/08/Aware-Winter-2009.pdf

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Life with MND - 2013 - September

September

 

On the 3rd, an engineer and Occupation Therapist both involved with Wheelchair Care made a ‘home visit’ and measured me up for a new chair to help posture.

On 4^th with great reluctance, but further weakening of arms mean I am unable now to support my electric razor and I’ve had to ask morning care team to shave me. Shaving and cleaning teeth have always felt very personal to me, but one gone and feel cleaning teeth will not be far behind.

On the fifth, Jean had both big toe nails completely removed, because of ingrown nails. The mind shudders at the very thought of it! The removal went as planned, then it involves months of bathing in hot salt water and changing dressings, and on the Saturday she was at our timeshare in Aviemore for a week’s respite.

As a core tiredness creeps over the body the effort for typing procedures was lacking. Luckily I had the foresight of forward planning and had the procedures all printed out, just as well as I’d two new carers during the week, plus our Allison, our daughter, who did one night’s sleepover. With Ross, who lives locally tending my needs during the rest of the week, including sleepovers.

 On the 26^th, L eon our great grandchild had his first birthday and I took a severe deterioration in my MND condition. Could it be life for one just beginning , whilst  another  was on the way out, I’d like to think so anyway!

To end the month, Jean phoned Doctor. On3oth and requested that I was ready for a P E G to be fitted (Percutaneous endoscopic gastrostomy) instead of taking in liquid and food through the mouth it’s a device fitted into the abdominal wall to get special food supplement into the system. This is in preparation when not able for any reason to take food or fluid in through the mouth.

This month’s notes may seem terse, but the effort and focus needed now to compose my notes creates a sense of urgency.

Life with MND - 2013 - August

August
Physiotherapist gave me neck exercise to try and stop head dropping. Although I do them religiously four times a day, I’ve a gut feeling that it’s a bit futile, as functions lost with this disease are gone for ever. Mind, tilting mechanism recently added to existing chair has definitely helped whilst on computer or giving back eye contact when visitors in.

Occupational Therapist got us ‘back up’ for transferring from chair to shower /toilet /bed. It’s called Arjo Stedy in the hope it may put off using hoist in the coming few months. Outcome is, it certainly solves the toilet issue at this time. 

When family and friends visit now they may well think I’m not interested in their conversation, because of no eye contact, but thankfully I’ve still a great interest in other’s and through circumstances now a very good listener. As core tiredness progresses I’ve got to ‘weigh up’ that any remarks I make on my Lightwriter are worthy of the effort involved.

Biting tongue or cheeks in the past month seems to have become the norm, whether, chewing, sucking food, yawning, or at times just swallowing saliva (and as people know, once ulcers are established it’s hard to avoid them). At this time using TCP (liquid antiseptic) mouth wash three times a day. For the ‘professionals’ to ponder.... would a gum shield help?

Another noticeable deterioration as MND trundles on, is the first attempt when I bend head to take a drink at any time, is aiming mouth with straw.

I still get bouts of ‘runny nose’ mimicking a cold, usually at meal times or drinking a glass of juice. Mind is convinced this is a body safety valve for getting rid of phlegm.

Through ‘being a creature of habit’ and regular exercising, it is very noticeable that hardly a week passes now without losing another function. Character building and frightening to say the least!

To end on a brighter note and as body deterioration progressively worsens. The up side to this ‘hellish disease’ is I now embrace and appreciate all that has been good in our country and in my lifetime and certainly don’t dwell on negative thoughts of putting the world to rights. After all, good far out weighs bad, and leaves time for constructive thoughts.

Life with MND - 2013 - July

July

Leon, and his grand parents paid a visit early in the month.  It was so interesting, at only nine months old seeing him being able, from knees to a standing position with only the help of a handhold. It certainly brought it home to me what I’d lost in muscle strength.

On 13^th we attended a family gathering, but with very little eye contact with people because of head continually dropping to chest I felt a bit isolated, and withdrawn. Until solution is found I’d be incline to avoid such meetings and it will rest with Occupational Therapist or supplier of electric chair to come up with an answer that may help.

At home and especially whilst on computer the problem of my drooping head has partially been solved by  a combination of the recent conversion to existing chair which now reclines, a cordless mouse, and having the keyboard on screen.It means I can now  sit well back from computer in a reclined position and work mouse off screen.  

Concerned how I’d get on eating out in public we went to a local busy restaurant for morning coffee and a scone. Coffee was no problem as I use a straw at home for all drinks (other than sprits which I still persevere without straw in glass). The scone was ‘home baked and crumbly’, however and I’d really to be over the napkin to avoid embarrassment of making a mess.  Result was, unless selective choice of eats (like shortbread) I could draw attention to myself, but we both enjoyed our wee outing with Jean looking around rest of shop, whilst I sipped coffee and really  enjoyed ‘people watching’.

According to ‘feed back’ my story has been well received at our health centre and local cottage hospital from doctors to nurses.

 

Here’s a rhyme in the Doric (see note below) by Ian C Middleton, a bit of humour for nurses.

My auntie’s a nurse in a medical ward and wis gie’in a patient his drug, 

Fin he happened t spot as she bent ower the bed, a suppository in the back o er lug, (ear)

‘That’s a droll place t pit it’, thinks he till imsel: ‘fits the reason? ‘he wintit t ken, (know)

‘Oh! My god’. Howled auntie, ‘it’s a gweed job ye noticed—it means some bum’s got ma pen’!  

It’s been a challenging month as disablement trundles relentlessly on,  but feel I’ve coped well both in ‘mind set’ and adjustments.

(Note from the techie! - Doric is the local 'dialect' spoken and written in the area in Scotland - Gordon has always had a keen interest in the 'language' and continues to use and support it to this day - readers may previously have read that he tried to teach his first lite-writer to speak Doric, much to everyone's amusement. I have reproduced the poem below in English, just in case the above makes no sense!)

My Aunt is a nurse in a medical ward and was giving a patient his drug
When he happened to spot as she leant over the bed, a suppository at the back of her ear
that is a strange place to put it, thinks he to himself, what was the reason he wanted to know
My God, Auntie howled, its a good job you noticed, it means some bum has got my pen!

Life with MND - 2013 - June - Part 2

June

Visit from Dietician on 21^st .

Part of my report to her:-

Jean now chops up food smaller than in the past and avoids chewy foods as jaws can now tire over a shorter period.  Another problem that can very easily arise now if not focusing is I bite tongue or cheeks while chewing. My mouth can get so tender that food finds its way to roof of mouth where sucked until dissolved. I have great faith in TCP though as remedy for a quick repair of damage.  Smaller mouthfuls have certainly helped in controlling biting inside mouth (maybe also good tip for people who want to lose weight).

Again, I’ve reverted to the book “Mind over Matter” previously mentioned in 2011 for inspiration to “dig deeper, and focus the brain on particular parts of body I want to move next”. This sometimes works, but feel its my final attempt in connecting the brain to movement, especially limbs.

To widen subject matter away from MND, folk that have influenced my life.

First was Fred Wood, my boss whilst a ground maintenance officer in the civil service, a tenacious, but fair man with an enquiring mind who taught me to always be  true unto thyself, and have a good structured reason for my actions,  or decisions. The other was clarity and brevity in writing letters or reports.

The other gentleman who influenced me, was Cliff Williams, a Yorkshire man, who came north in his mature years. Anyway Cliff again, a very tenacious man who had polio from an early age with legs severely twisted. But in spite of his disabilities he bought a two acre plot on a slope, built a house and our firm was taken on to landscape the rest. Well! One day in the autumn he got himself up a steep rise, half tumbled onto his haunches and proceeded to dig holes and plant bulbs. I remember at the time thinking “Why in god’s name does he persist when we are on site to do it for him”. But now being in a similar plight, I fully understand Cliff’s dogmatic persistence as I am exactly the same.

Certainly since being severely disabled I adhere to the saying, “one should have to walk a mile in another’s shoes before questioning, criticising, or forming an opinion on them. 

If involved in the simplest of tasks I find it’s so easy to get frustrated, this is a combination of the effort, time, and ending up completely drained of energy. Of course extreme fatigue is one of the main characteristics of MND.

Although carers are in attendance 7 evenings, and 5 mornings a week Jean is still very heavily involved in my care and I thank her for unfailing support and caring qualities that make life that much more acceptable.

Life with MND - 2013 - June - Part 1

June

The Physiotherapist introduced ‘breath stacking’ as a exercise to help the respiratory system, but being a believer in euthanasia and considering prolonging an already diminishing life style I was reluctant to get wholeheartedly involved in it.

However after many hours of seriously thinking and analysing the situation, and considering the dedication and great ‘backup’ from Jean, family, friends and the ‘care team, plus having no pain and sleeping well,  these all helped sway me to deciding quality of life is still good - and so I’d go for the exercise: meaning deep down there is still more living to enjoy!

However I’ve faced lots of body deterioration in a long road travelled since diagnosed and to try improving the respiratory system is contrary to my beliefs, after all I’ve already decided if ever on life support machines I’d opt for  no DNR (do not resuscitate).   

I had two low and negative days in May. I always say out of adversity if looked for one will find positivity. In this case it was the appreciation of all the positive days I seem to be blessed with.

After keeping a diary since joining the Civil Servant in the mid sixties reluctantly I’ve had to give up attempting to write it up, because I can no longer control left hand. I now type important details on the computer.

Muscles that support the upper body and head have been weakening for a period, but most noticeable now as its affecting my vary-focal spectacles. As head drops down, it puts the spectacles out of focus. Consequently I’ve continually to lift my head to see clearly. It’s so important to approach problems with an open mind for answers and on the 15^th I suddenly thought ‘why not try my discarded bi-focal spectacles’. Low and behold, I found them far more amenable than the vary-focals to the degree that I’ve reinstated them and now wear them daily at some time.   

  Unlike respiratory exercise where there’s a bit of negativity I will tackle posture improvement with gusto whilst muscles still able to respond.

Whether it’s because I’d stopped using an antiperspirant on the groin area or not, but I formed a skin rash. We called in the Doctor who prescribed a cream. With very little movement in that area in the chair, but especially in bed,  I’m inclined to think it’s caused by sweating. An ideal setup for a fungal skin infection to incubate.  Anyway after ten days the cream cleared up the rash, and never having a similar infection in the past 7 years of wheelchair confinement I’ve reverted to try using the antiperspirant again, but will monitor closely. Two weeks on, I’ve had to revert to prescribed cream, so it looks like it may be  a recurring problem.

Life with MND - 2013 - May

May

As standing on scales now becomes difficult I’ve decided to weight myself only once a month. At ‘weigh in’ I was11 stone (70kg.) I’ve been approximately  that weight since diagnosed in 2005, so that’s good.

 Another dramatic change took place on the 12^th from always managing to seat myself on the toilet unaided to needing assistance from Jean and the rota-turner. Whilst sacrificing my independence it’s quick, safe and a successful way too get seated. Having said that, now if Jean’s not around I can’t go! This state of affairs is just another diminishing acknowledgment on the road I have to travel as a MND sufferer.

Being a creature of habit and as disability moves on, I find any change  to my daily routine can now very easily turn into a crisis, and if I allow it to ‘fester in the mind’, it can end up a real drama.

To end this page on a brighter note. The hoist has been in place for about a year parked in the bathroom.  It’s a constant threat, and reminder but I’ve never needed it to date, other than an initial trial run: “when trussed up and suspended I had an image of a Christmas turkey ready for the oven”. So glad and relieved I’ve still got the strength in shoulders and arms to still pull myself up whilst using the rota-turner.

Life with MND - 2013 - April

April

When oh! When is the weather going to warm up.  Since having this disease I’m a bit like many reptiles in that, before they can get active they have to warm up. In my case, if I venture outside, ideally I like a temperature of at least13c, otherwise remaining active muscles are inclined to go stiff and are reluctant to move.

Although this has been a constant year of adaption and adjustments as the MND progressively weakens muscles to the point of uselessness, by far the biggest decision was calling in a care team. I certainly approached the thought of carers tending my more personal needs with trepidation. But any negative thoughts were quickly dispelled with the efficient and caring qualities of Carers (to date we’ve had14/15 different one’s all with their own personalities and idiosyncrasies, but efficient in what they do). This decision didn’t come lightly, but in fairness to Jean and myself, it had to come.

I try and involve exercises of some description every day.  ‘Lose it or use it’ is a casual phrase often used, but it is certainly true of muscles and joints. Muscles it’s said can start losing tone in 24hrs if unused. I find it difficult to keep shoulder muscles supple in that I need assistance to exercise them. My arms have certainly shortened, which I believe is referred to, as (contracture).

I still stand up many times throughout a day with the aid of hand supports. I feel it benefits circulation and digestive systems and it’s so nice not to be looking up at people, but have eye to eye contact even for a very short time.

Life with MND - 2013 - March

 March

With the onset of this month, it is hard to believe how quickly the year is flying past, however, still the pessimist - one believes the warmer weather is not to far away.

Functions lost in February/March

left thumb now to weak to operate on/off button of electric toothbrush.

can’t free stand now without added support of backs of thighs pressing against electric wheelchair –(adaption-using hand holds either side of toilet).

 

It was with great reluctance in late March that I informed Jean too organise a care team to dress/undress/and shower me. This was a combination of Jean struggling with a bad back and her arthritic fingers not coping with putting on my elastic stockings (to help swelling of ankles and legs) and for me, it was just the effort expended in trying to put on and off trousers, and in the end I  just had to give in—first Carer on evening of 29^th March.

Swallowing is fine, although eating can use up a few tissues between lips not collecting stray food and running nose only at meal times. I should really use a bib, but to proud at this stage and tend to crouch over my plate, which catches any overspill. Oh! I know one should be upright whilst eating according to those who know, but bib versus slouching over plate - slouching wins at present time.

It irks me being a burden, but as my illness bites deeper I have now accepted the situation as it is and not as I’d like it to be. Jean certainly helps with her infinite patience, which must be stretched at times with my perfectionist and dogmatic ways.

I sleep pretty well. Oh, I still get pain in hips/pelvic area when in one position,say after an hour maximum, however no pain in chairs, which is normally around 15 hours a day, so really very lucky.

I’ve no fear of death, but it’s the slow pace in which it may happen.

Let’s wind up the first quarter of the year with a few sayings that have helped me and could maybe help readers of story as well.....

Enjoy what you can and endure what you must.

Go to bed thankful — and wake up hopeful.

One must learn a new way of thinking before you can master a new way of life.

Life with MND - 2013 - February

February

There’s no doubt as this month passes my trusted right shoulder,  is now progressively weakening fast. Meaning if not close to the body it has no strength and just drops down and fingers not co-operating when the finer motor skills are required.

In the past I’ve frequently used the phrase “sloth like” but progression of time has dispelled this statement when compared with present level of movement.  

It’s now a personal triumph to get through another month and still retain a reasonable level of independence. But late in the month I very reluctantly, but realistically, had to inform Jean to organise a care package for Jeans benefit and mine. It’s been a month of complete reappraisal and adapting as limbs seriously weaken.

Life with MND - 2013, a new format

A New format - I’m now  including  thoughts in the months

January

Well, little did I think I‘d see 2013 when diagnosed in2005.  Again, my aim this year is to retain any level of independence for as long as possible.

Reputable information from internet states that “motor neuron control voluntary muscles that control speech, walking, breathing, and swallowing: typically the disease is fatal within 2/5 years with around 50% dying within14 months of diagnosis: 1in 5may survive for 5 years and 1 in 10 for 10 years.

Mortality normally results when control of the diaphragm is impaired and the ability to breathing is lost. In past and now, my respiratory I’d say is fairly good, so what the future holds this year is the varied and unknown journey experienced by each and every MND patient.

Jean arranged a “home visit” from Doctor on the 3rd as I’d caught a cold. I was put on a week’s course of anti-biotic. Sleeping well, and within week pretty well back to normal.

Jeans last break was in September last year, so she intends going through to Allison, our daughters for a three day break. Jean as always, had prepared all meals, and Ross was covering sleepovers and my daytime care needs, so everything was in place. With no mishaps over Jean’s three day break it was deemed a success, other than perhaps communication which Ross and I treated with a touch of humour.

But it often crosses my mind what would happen if I ever was hospitalized!

Attended support MND meeting in Inverness - always interesting outing meeting fellow sufferers.

District nurses made a home visit to take blood pressure, and bloods — with no recall I assume both ok.

Overall I’ve had a quite acceptable month.

Life with MND 2012 - Final thoughts for the year

My Thoughts

T he negativity of the bodies deterioration is concerning, but it amazes me how much positivity I have most days. Oh! There are the few days when negativity creeps in.

As I compose this part of my story it’s the few last days of 2012. It’s not been a good year, as the MND now leaves very little room for adapting or maneuverability as it “bites” which has meant a year of constant adjustment as muscles weaken to the extent of uselessness.

In spite of the year through Jean’s constant attention when required, dedication, and self-sacrifice of her time, plus, having the house adapted to a good level to accommodate most of my needs has given me a fair quality of life under these worsening circumstances.

My illness is now in steady decline and interspersed with good days and then sharp downturn days, this scenario can creep on for months finally ending in another function lost for ever.

For me personally the period of time since diagnosed (2005) has been long, and is viewed with mixed feelings—upsides and downsides.

Firstly upsides, quality of life has been acceptable.  I’d have missed family, who have been so supportive for Jean and me, and friends/neighbours who after seven years still regularly visit us, (and of course when visitors come it can involve the occasional dram) Jean and I got our first great- grandchild, Leon. He’s lovely! And to me this is what life is all about.

The downside with my illness is there has been no noticeable brain disorders, no noticeable deformity,  no loss of sensation in any body parts, and finally no pain (a real blessing in its self). In my type of MND, as in most other serious illnesses, one is inclined to dwell on his own deteriorations. Being a bit isolated geographically, plus patient confidentiality and considering Scotland's population of just over five million and in any year less than five hundred would get MND,  it has been difficult to get information.  However, as previously mentioned MND Scotland have now arranged support meetings in Inverness. To date there has been three, which we have attended.

In the latter weeks of the year typing from computer keyboard has been erratic, as arms and hands get harder to control, so now using programme downloaded onto computer as described in August.

Although 2012 has passed quickly, my illness has been a long drawn-out affair with regards deterioration of the body as it teases me, but relentlessly creeps on. Mind, again it’s been a “character building challenging exercise” to say the least as I’ve grappled with trying to keep a bit of independence. However in 2o13 I feel there will be no choice but to surrender to the inevitable hoist,  and a further loss of dignity.

My parting shot for 2012 would be---I now appreciate my life and the world as it is, and not as I’d like it to be.

Yet with all the negativity of 2012 I’m looking forward to spring 2013 when again I see leaves appearing on deciduous shrubs and trees and coming to life for another season.

Life with MND 2012 - Part 4

October—November

Most noticeable at this time is the frightening acceleration of muscles weakening in shoulders, and finer manipulation of fingers.

December

To let readers realise the extent of weakening disabilities:-

 I now have to make two attempts (with good rest in between) at shaving, because muscles too weak to hold electric razor up for the 6mins needed.

I find it difficult now for fingers to break paracetamol caplet in half and find free standing now without some sort of support a problem (this will end my independence in so many ways, especially whilst dressing.)

Transferring from manual chair to electric chair, the feet can get as if welded to the floor, but at least I can get Jean to use the roto turner for this procedure.

Finally, the trusty right arm, which served me well since diagnosed, is almost similar to my left now virtually useless if away from the body for any distance!

Regarding information for carers in July. I like to think I’ve maintained the same level of independence in December. This has only happened through dogged perseverance and a few attempts at some particular tasks whilst dressing. (This may be wishful thinking, Jean would have the honest answer)

Information for Carers - Notes written July 2012

This is a note typed by Gordon for the carers who came to look after him. This was a new departure for Gordon, and as you probably know from his notes, he likes to be prepared, and likes others to be too! It all seemed to work well, so I have included it for interests sake

 

Information for carers—July 2012

Jean-comes down stairs at around 06-40 to get me up, unplugs electric chair from charger: tilts mattress to near upright position then gets me on chair via rota turner, and puts slippers on.

Gordon—I’m in the bathroom for about 20mins, and then go through for breakfast.

Jean—prepares, and sets out my breakfast normally finished just before 0800hrs, and then Jean puts on day socks: then that’s me in bathroom/dressing area until 09-20.

Jean—comes in and tucks my tee shirt into pants: puts on selected top: pulls up trousers tucks in top, if needed and ties top button of trousers: she then leaves me to finish off. When I come through she makes coffee.

Gordon—this is “my Chill out time” when I read the newspaper on line: by the time I’ve finished coffee it’s normally around 1100hrs. I then exercise for 20mins followed by filing/admin/typing till 1200hrs when it’s lunch.

Jean—sets out salad lunch, cutting up any meat/quiche/pie, and pours up a fruit juice.

Gordon—normally I’d finish lunch by 12-30 then its living room with feet up and a nap till around 1400hrs then on computer until 1500hrs.

Jean—comes through and makes coffee.

Gordon—“chill out time” again when at my coffee I’d usually play solitaire and read, or  send emails by then it’s 1600hrs:  its exercise for half an hour followed by “bits and bobs” until tea around 1700hrs.

Jean—prepares cooks and serves up my meal.

Gordon—the next time I need Jean is around 2200hrs to take off tops. I then go into dressing area get trousers off and put on pyjama trousers, buzz Jean.

Jean—takes off day socks, and puts on night socks: put on pyjama top and tucks top into trousers: when I’m organized she gets me from chair to bed via rota turner and spreads up duvet and secures with bungee on back rail. Hopefully that’s me till 06 -40 and then repeat procedure the following day. 

Obviously Jean helps me with many other tasks throughout all days, but the above guide is the absolute essentials for carers.

Feed back for Crossroad Carers—

Jean had a nice relaxing respite break at our timeshare in Aviemore. Allison, our daughter was up for the duration, but it was important to try ‘Crossroads’ now with Allison as a ‘backup’

However, Steve, the carer did just fine, and it allowed Allison and Ito bond in a different set of circumstances.

Life with MND Part 3 - Thoughts

My Thoughts

I solved the dribbling in an evening by sucking cloves.  Close family or friends would have said a dram would have had same effect. very true, but drams in an evening is now inclined to give me reflux.

Deterioration regarding muscle wastage still trundling on with more concentration and focus needed to maintain a reasonable level of independence.

Life with MND 2012 - Part 3

Apologies for the lack of updates, but the techie had the temerity to go on holiday - some more historical notes from Gordon.....

 

July

I no longer try to hold a audience with my Lightwriter—it just takes to much effort now as a core tiredness creeps over the arms and body. Whilst in the past I always felt if I was “bright and breezy” any people visiting left in a similar way.

By an evening, I can now get exhausted and this can be seen on occasions when it appears lips weaken and I tend to dribble from mouth, thankfully this condition never occurs in bed.

My electric chair is now fitted with new arm rests, the left one is channelled to retain arm from slipping off (I can now brush hair again instead of asking Jean) also fitted was a head restraint when in the new car. 

The higher “grab rails” on the new bed has thrown up a few problems (so what’s new) but are essential to allow the upper section of bed to raise me into a virtually upright position so Jean is then able to get me into a sitting position on the edge of the bed.  The main problem was solved satisfactorily by the use of a bungee cord secured to the duvet at the base of the back “grab rail.”

August

We had inaugural meeting with Crossroads Carer Organisation regarding Jean’s pending four nights in September at our timeshare in Aviemore. At this meeting I gave her information of my needs.

As I gain confidence on entering, and exiting our car it’s opened up a new world ending the mundane, and predictable weeks of the past four months. To the extent that we attended the initial support meeting in Inverness with MND Scotland for patients and their carers, interesting to say the least!

The ongoing irritation of occasional runny nose whilst at meals is still persisting.

September

Weight still stable at 11stone.  Well it’s time for Jean’s wee break. Ithink I’ve thought of everything in anticipation,  but Allison coming up just in case!!