Living with MND - 2008

January

I can get a wee bit “choked up” at meal times, which seems to result in a “runny nose” followed usually by a sneeze that clear the tubes.  Part of my daily routine was to walk with the “walking aid” a distance of approximately 20metres, but a fragile left hip, and occasional collapsing left leg I’ve lost all confidence in attempting to walk at this time.

April

I got the chance to attend “The Oaks” -- a Macmillan palliative care day centre for six free sessions at their “Complementary Therapy Clinic” which included Reiki, Reflexology,  and Body Massage.

May

Fell with walking aid, because of the phone ringing. Had to attend the Rehabilitation/ Rheumatology Clinic for assessment.

July/August

Jean had a few days in bed because of not feeling well.  I’ve always said though, if one looks hard enough “there is always benefits’ comes out of adversity”. In this instance, I had to fend for myself (including meals on two separate days, which  took me out of my comfort zone, and improved my confidence)

September

Jean and two friends had a four night away break at our “time share”     

December

Overall 2008 has been very good to me, with little deterioration, and a good quality of life.

 

My Thoughts

On entering “The Oaks” it had a lovely serene ambience, and thoughtful cheery staff at reception. I’m a very poor participant regarding Reiki/Reflexology as I feel one must enter such manipulations with an open mind: being a sceptic I feel I didn’t benefit. The back, shoulder, and neck massage however was very relaxing: not that I was experiencing any pain prior to the treatment. Overall the treatments gave me a nice cared for, pampered, and general feeling of well-being. 

To avoid falls, I’ve really got to concentrate, focus, and do risk assessment in every situation because of my very sensitive reflexes at any sudden unexpected noise. Plus my reactions are so “sloth like” that arms or hands are no protection if I start to fall.

When on the floor I find myself totally helpless: It’s really quite frightening!

2008 has been a positive and satisfying year. Any problems thrown at me I’ve improvised, and adapted to well. To date my illness has been virtually pain free.

Living with MND - 2007

Just a quick note, after a few emails out about this blog, I am delighted to see such interest in it. I have passed on the stats to Gordon and he is well chuffed with his readership. Here's hoping there will be lots more interested readers. I am not sure if it has been mentioned before, but Jean is my Aunt, Gordon's wife. Anyway, another historical instalment below.

 

January

Attended Rehabilitation/ Rheumatology Clinic for assessment, and because I’m experiencing pain in the left hip, whilst in bed the Doctor decided that a steroid injection in left hip may help: after a week no improvement.

February

70^th birthday “bash”

May

Physiologist tried “ultra sound” on my left hip: again no improvement.

August

GP prescribed “Nytol” (sleeping pill) to see it would help my disturbed sleep of having to turn every half hour. 

September

on a suggestion from the Physiologist I got a home visit from the Chronic Oedema nurse, who issued me with elastic stockings. After two years of swollen legs, ankles, and insteps within three days of wearing stockings the swelling was down to a very acceptable level.

December

The past year has shown very little deterioration. –A real blessing!

 

My Thoughts

On my 70^th birthday party and as the large majority of the 50 guests had not seen me since MND had taken over my emotions: I put the following note on all tables.

Motor Neuron has affected my emotions

Imagine us all having a crying, and laughter jar. These jars have lids controlled by our muscles, which in turn control our emotions: with me however, the muscles are so weak that what you get is raw emotions: (a bit like a baby)

T he frightening part for bystanders is the intake of breath after I laugh: I think it’s because of weak diaphragm muscles: I bray like a donkey—don’t worry I’m not mad!!!

Conclusion—if I get a “gut feeling” I just have to laugh, it’s quite spontaneous. Don’t worry; I’m enjoying myself, so make allowances for me.

Jean had four breaks this year: the longest was four nights away. To accomplish this we had to do a bit of forward planning

1) We organised too get a “community alarm” installed.

2) Arranged for Crossroads Caring Team to be present for an hour at evening meals.

3) Jean prepared enough evenings meals suitable for either oven, or microwave and then put them in the freezer.

4) Lunch was mixed salad diced up and put in “a special preserve salad bowl” and kept in fridge.

5) Breakfast cereal was pre-packed in individual lots. Although I always use the manual chair in the house as I feel it helps retain upper body strength, but the electric chair comes into its own when in the kitchen as it frees up the left hand for carrying.

6) Finally Ross, our son came in for his tea, and “sleep over’s”

When on my own I really go into the “focus mode” which means I need my own space to chill out.

 Ross and I have an understanding he only helps if asked.

After all: if you don’t want to loose it use it for as long as possible.  

Exercise most days: but every so often MND kicks in to show me who’s “the Boss”

Because of my tenacious and disciplined lifestyle I hope it gives Jean a life, and not impinge on her time to much. 

The conclusion too Jean’s breaks were she certainly benefited from getting away, and for me it’s always good to stretch myself and take me out of my comfort zone. 

Living with MND - 2006 - My thoughts

These are the thoughts from Gordon for 2006 - added as promised. The poem below may not be easy to read for the non-scots readers, but I am sure there are 'translations' out there, if not get in touch via the blog, and I can do a rough translation for anyone who wants it. (If I get asked, I will put it up on the blog for all to see)

My Thoughts

The body’s deterioration over the year had left me in no doubt that life was quickly drawing to a close, but then November brought a very positive mind-set. Unlike the following poem the change for me was over a week period, but never the less, it had many similarities. “The Respite” composed by the Scot’s poet W. D. Cocker. 

A road a’ maun travel baith willin’ an’ laith;

An’ there I fell in wi’ a chiel they call Daith.

He stood as though mowing, o’ reapers the king,

The blade o’ his scythe was set back for the swing.

But as I drew near him he swithered a wee,

An’ seemed to misdoot gin his tryst was wi’ me.

I glowered in his een, but he steppit aside,

He shouthered his scythe, an’ he said “Ye can bide”

An’ I’m back in my bed, but o’ this I am shair,

I’ve met him, I ken him, I fear him nae mair.

 

I can’t explain the change of mind-set, and attitude in November: on hindsight however, I’m inclined to put it down to my fatalist lifetime fixation “what’s in front of you will not go past you” (this was always a favourite saying of my Mum’s)

Regarding religion: First, I’ve always believed that the best things in life are free, and I have always felt I’m nearer to my creator in the countryside than in any church I’ve ever been in. I have never thought of being religious, yet, I suppose I abide by the Ten Commandments pretty well. However, I’m of the firm belief that after death there is no afterlife. Maybe it’s having been in the horticultural profession for fifty years and I see myself as “a real basic son of the soil” that I’m completing the cycle of returning to the soil.   

Living with MND - 2006

Another year of his thoughts and feelings - no 'thoughts' at the end of this one, but I will look out for it and post it when I get it. I hope readers appreciate that I am getting these notes from Gordon, as and when he has the strength to send them on, hence the layout of this blog. I will email him and get him to look for his thoughts for 2006, which I will post when I get them.

You will see from this years experiences, that technology beginning to come in to his life and beginning to help Gordon communicate in ways he would never thought possible. It has over the years been a godsend and praise needs to go to both Gordon for trying it out with such relish, and the geniuses involved in developing it. Long may such developments continue, as those of us who remain fit, can never know just how much such technology helps those who need it most. I have added a couple of links for anyone who is interested in finding out more about MND.

MND Scotland
MND in England, Wales and Northern Ireland

January

Use walking aid 90% of time now.  Upped exercise time: don’t know if it’s of any benefit at this time, but feel I’ve got to something constructive in this time of destruction to my body.  Loosing lots of bodily functions at this time the most noticeable over the past month is my speech.

February

I took collection of a “Lightwriter” from the Speech Therapist. My voice comes, and goes at this stage of deterioration, but it’s scary to think that the voice will go completely, and if like everything I have experienced with MND never to return, so the “Lightwriter” will become my new voice until the end.

March

Problem with swollen ankles. I suppose it’s because I’m, using the manual wheelchair so much now. To try and check the condition I’ve taken to wearing “flight socks” but after two weeks they don’t appear to make any difference. A further appointment with Neurologist at Aberdeen Royal Infirmary: not really up for driving so Jean drove the 160 mile round trip. I decided to stop “Riluzole” medication. 

April

I find my emotions are getting harder to control, and my body movements are “so sloth like” yet a sudden noise, like door bell, or phone ring have caused numerous falls, or spillage of drinks, because of ultra sensitive reflexes. I feel it’s a contradiction on the one hand “sloth like actions” and on the other reflexes so acute that a sudden unexpected noise can cause falls or spill drinks.  Speech Therapist has suggested I should see a Doctor about the insertion of a feeding tube whilst still strong enough for the operation. The conversion of our integral garage to a bathroom/ dressing area when I can no longer manage our stairs is now completed.

May

A right “core tiredness” has developed this month: I feel the body is slowly, but relentlessly shutting down.

June

A year has now passed since being diagnosed, so we had a family, and close friends party, which was thoroughly enjoyed by all. Regular exercising still ongoing with the exclusion of floor work, as it’s too difficult to get up.  

July

Very reluctantly! I decided to move downstairs to a single bed fitted with grab rails, and a slide sheet to assist in my turning, because negotiating the stairs is now becoming a safety issue. 

 August

Between trying to adapt to the new single bed: painful hip, and when turning, attempting to position the duvet so that I’m still covered has taken over a fortnight to master. Prescribed “Baclofen” to control muscle spasms. Another first! When going to bed have used a” walking aid” most of this year, but at times, I found my feet unable too clear the floor, so have had to change to the manual chair.    

September

After six days of non-stop hiccups my Doctor prescribed “Omprazole” Great! It stopped hiccups and a problem with reflux immediately. My first appointment at the “Rehabilitation/Rheumatology Clinic” at Raigmore Hospital Inverness. Developed breathing problems, but don’t seem to have a cold. I got “Sudafed” a nasal spray suggested by the chemist on the premise that if the condition persisted I should consult my Doctor.

October

Advised by the Doctor to take “Beconase Nasal Spray” and stop Sudafed.

November

I took collection of an electric wheelchair. We had an appointment with the Surgeon who would be responsible for inserting my “feeding tube” if needed: the outcome of our meeting was to delay it just now, but if I deteriorated it would be fitted within a week. A new inner feeling of positives seem to have materialised in my mind this month, in that, having worn slippers for most of this year suddenly decided when dressing in the morning I’d start putting on lace-up shoes. 

December

Again, this month I have an unbelievable core feeling of wellbeing, which I can’t explain. So much so, I’ve taken to wearing button up shirts: a first for about a year! I will try in “My Thoughts” how I had a funny experience that may help explain the change of attitude.

Living with MND - 2005

Another year of symptoms, all adding to the inevitable diagnosis. MND takes time to diagnose, some 3 years in Gordon's case, but the diagnosis eventually came. Energies now had to be focused on dealing with the diagnosis. His notes are now monthly, charting any noticeable changes to his strengths and weaknesses. His thoughts as to his condition, as always a summary at the end of the report.

 

January

Because of close monitoring I notice deterioration is now progressing fast: balance whilst walking, on stairs or carrying items: saliva in mouth, and sensitive tongue.

February

Opted to stop my involvement with the concert party I’d been part for the past 10 years, or so, because I couldn’t keep up with fast tunes, whether singing or playing the mouthorgan.

March

A further CT scan, which again showed no abnormality.

May

An appointment with the Neurologist at Aberdeen Royal Infirmary

June

On 20/6/2005 admitted to ARI for tests, and on 24/6/2005 the team of Doctors/Specialists were fairly certain that I had MND.

August

Went on a weekend break with family and friends: used the wheelchair as support for walking, then when I got tired I sat in the chair and got pushed---A first: using” the chair” inside, or out!

September

Deterioration now noticeable in the following items: - speech some days, ok, others very poor: experiencing fluid retention in left leg and ankle: carrying drinks whilst walking getting very risky.  A first! Had to use walking aid to get me to the toilet through the night.

Appointment with the Neurologist. No real noticeable deterioration in body strength or muscle wastage since being diagnosed.

October

Fallen a number of times: feel its transition between free walking and having to use “walking aid” more frequently in past three months.

We can’t fault NHS Grampian and Moray for their very prompt attention after being diagnosed. First was the Occupational Therapist with an essential requirements specification for converting the integral garage into a bathroom/ dressing room closely followed by all other professional services involved in my welfare, and illness.

November

Another month of a marked deterioration in my mobility. I started taking the medication “Riluzole” which can supposedly prolong MND sufferer’s life expectancy by three, or four months.

My Thoughts on 2005

It was both with relief, and serious concern, when accompanied by my wife, Jean and daughter, Allison we were told by the Doctor that the team of medical specialists were 85% sure I had MND. Relief, because at last I had a name for my on-going degenerate physical problems, and serious concern that there was no known cure for MND.

All my adult life I was one who liked a new challenge, and when I had overcome “the particular challenge” I’d move on to another, however I now feel this could my final and biggest yet!

I find the week’s pass so quickly in that the mind has to be so focused on risk assessment, and mind over movement etc.

What was so concerning, and frightening, was in spite of a very positive outlook in the past year — what physical attributes I’d lost never returned!!

When diagnosed I decided “to make the best of a bad job” so started my day with the following saying.

"Look to this day,

For yesterday is but a dream, and tomorrow just a vision,

But the day well spent makes every yesterday a grand experience, and every tomorrow something to look forward to.

So live this day well."

Living with MND - 2004

Another year - for you readers to catch up with

 

As I said earlier, I am posting on behalf of my Uncle, and these are the historical notes made on his condition and how it impacted him and his family and friends. As you can see, the disease moved slowly, little of note to report in detail, but as always, he recorded his thoughts at the end of each report.

January—As a member of a concert party we were entertaining at a belated Christmas party, which involved the meal. Well, the menu was traditional turkey and trimmings etc. all lovely set out, but for me the whole meal was so bland. Since then and for at least the remainder of the year I experienced a hot sensitive tongue, and at times my mouth seemed to be full of cheek, plus a craving for hot spicy food: a yearning I had never experienced in my lifetime.

For the remaining months of the year—There were many days when my balance was very poor.

September—On a brisk walk of half a mile a very noticeable limp developed in my left leg, and the left foot would begin to slap down.

 

My Thoughts

At this stage of my illness, and contradictory to the Doctor’s assumption that I had a slight stroke my “gut feeling” was it was something more sinister.

MND was first mentioned by our son, who at his work had a client whose mother had symptoms very similar to what I was experiencing and she had MND. I new this disease was fatal with no cure, but quickly put it out of my mind as I’d never known anyone with it.

At the end of the day, on many occasions the more physical tasks in my daily list were not being ticked off, because just too weak to execute them.       

A Summary of the early days

These are the actual notes from Gordon, published here as background for interested readers. One of the main problem with MND is the difficulty in diagnosis. From initial noticing of problems to final diagnosis took Gordon almost 3 years. These are Gordon's notes for the 'Professionals' involved with his care.

 

Living with MND

Having been diagnosed with MND in 2005 and it’s now 2011 and I thought it time to record notes from my diaries on my unknown journey. As “all professionals” say each and every patient has a different road to travel. So here’s my journey to date.

My name is Gordon McKenzie, born in early 1937, and always had a very active lifestyle.  Being left handed, one of the first indications of any problem was when writing I’d occasionally lose my firm grip on the pen: this was in November 2002.

 

January 2003

I developed a weakness in my left shoulder, arm, and hand: this was thought to be a trapped nerve, so I was x-rayed, but other than “fair wear and tear” it showed nothing untoward, and in view of being involved in manual work most of my working life, and my age it was deemed acceptable. The Doctor then suspected I may have had a slight stroke. (and was treated on that basis for the next two years.)

June

I attended the Neurology Department at Aberdeen Royal Infirmary on an exploratory explanation for my weak arm and hand.

July

A CT scan on 16^th showed no abnormality.

August

A further appointment at Neurology Depart, Aberdeen, still nothing to report. 

December

On the 15^th got an MRI scan, which again showed no abnormality. It was assumed by the Neurology Department that at some time I must have had a small stroke

My Thoughts

Let me first give an insight of how my mind works. Being a creature of habit that has always monitored himself very closely: compiled a daily list of tasks, and ticked them off at the end of the day. This has always given a nice inner satisfaction, and feeling of achievement.

The year didn’t restrict my manual work as a landscape gardener, although I fell three or four times, but it was either on steps, rough terrain, or carrying something so thought no more about it. I exercised my left shoulder, and massage my hand regularly to see if it would help, but feel it was doing no good other than keeping them supple.  However, I’ve been involved in exercising all my working life so it came quite naturally to me.

What is MND? and why a blog?

MND progressively destroys Motor Neurones of the body, and leads to weakness and wasting of the muscles, which in turn cause increasing loss of mobility of limbs, and difficulties in swallowing, speech, and breathing: it’s a fatal disease, which has no cure.

 

The words being added to this blog are mine, started initially when MND robbed me of speech in early 2006, to help the dedicated team of “Professionals” who have tended to my welfare throughout my illness, and also family and friends. I thought it fitting to record my unknown journey “Living with MND” to give a better insight into my progressive deterioration and thoughts. 

 

 I have wanted to use my notes to start a blog for some time, to publish what life is like with MND for me, but never quite got around to it until now. I know that time is running out, hopefully slowly, but things are getting more difficult for me by the day, so as I am no computer whiz, I have asked my niece to do the techie bits for me, but honestly, the words and thoughts are mine.

 

There will be a few posts which are historical, but hopefully this will give a good background for what is to come for anyone who takes the time to read this blog.

 

If you do read my musings and feel it is of benefit, please do let others know of its existence to help everyone who maybe impacted by MND, here goes....