Life with MND - 2012 - Thoughts on Part 2

My Thoughts

I must say, initially a bit apprehensive of using the ramp on entering and exiting our new car. With the recent inclement weather, I’m not getting the chance to familiarise and practice. Plus there’s always the added combination of my age and losing dexterity and motor skills in my right hand which controls the joystick. However, it’s mid-July as I compose this part of my story and the few times I’ve been out, I seem to be managing ok.

 Let’s dwell momentarily and review difficulties in the past to how they are now.

Emotions - reported in 06:

My reflexes and reaction to sudden noises have improved. As has controlling the spontaneous laughter to a degree. Whether this is as time goes on I’ve become more blasé to my condition, I do not know. Oh! I still cry at anything patriotic, sentimental or I suppose, anything of excellence, like a singer reaching a high note, or an exceptional musician. 

Sleeping

Certainly improved over the past two years. Where in the earlier years the most I  got was half an hour before I’d have to turn because of painful hips, now I can get anything up to one and a half hours undisturbed sleep before having to turn.

Eating

Over the years eating has slowly deteriorated but now accelerated as lips weaken and progressive paralysis creeps into the right shoulder, arm, hand (the combination used for lifting cutlery to my mouth.) Still very much enjoying selective and well prepared meals with no problem swallowing.

Exercise

This is going surprisingly well. Starting in bed before getting up, followed by two ten minute sessions during the day and again when I go to bed in the evening. The bed exercises all involve shoulders, hips, and abdominal muscles.

Regarding having to call Jean to get me out of the new bed in the middle of the night, one may well ask how, with no voice? Well, when I lost the ability of getting myself out of bed on my own I must say I felt isolated and very vulnerable should I need to get Jean’s attention. Bearing in mind Jean has a phone by her bed, so before going to bed (because in bed I’ve no specks on) I punch our landline number into my mobile phone, then strategically position my mobile below the pillow. I very seldom I need to ring her, but it certainly gives me peace of mind should the need arise. Another problem solved for the present time!

I hope I’ve never shown any signs of feeling sorry for myself, but one thing I am is realistic and must acknowledge is my diminishing capabilities especially this year. Having said that, there’s been countless occasions this year when after a few attempts at a particular failed task I think positive and focus and see myself completing it, and hey presto it works!!

Mind, I’m selective what I apply this to as I’m under no illusion that MND rules, however, I feel it prolongs my capabilities of doing things for myself, for a further 2/3 months at this time. It would be so easy to give up, and ask for help.

Meaningful saying that have helped me.

Within reason, what the brain of a person can conceive, and believe a person can achieve.

You can fail many times, but are not a failure till you give up.

 

Life with MND - 2012 - Part 2

April

Early in the month Jean had a nausea, listless morning so having breakfasted me went back to bed for a few hours. It made me realise just how reliant I’ve become on her. Since then we have activated Quarriers , an organisation who put you in touch with carer teams of people.

Constipation, since the beginning of the year has become a problem - again a first in my lifetime! Without going into much detail, this I feel has developed through the “pushing muscles” of the bowel continue to weaken, the Dr. has initially prescribed Senokot to see if it helps.

Attended my annual visit to the chronic oedema clinic and got new elastic stockings. The stockings are certainly keeping the swelling in the legs, and ankles to an acceptable level. 

May

Hand written entries in my diaries getting so I can’t read my own scrawl, just another adjustment I’ve to make in my life.

The Occupational Therapist and engineer affiliated to wheelchair care have visited, at my request, to revise my needs, especially on new types of arm rests as shoulders and arms weaken. 

My toilet, which washes and blow dries me, had its annual service. It has been great and helps retain my dignity, which I find so important.

June

Getting in and out of our car has become a serious problem as shoulders and arms weaken, so went online to source second-hand mobility vehicles. Settled for Fiat from garage in Elgin. Jean then did all negotiations to acquire it.

Had lady representative from Quarriers visit us regarding setting up caring team to come in so Jean can get occasional respite.

Although the present bed I was using since moving downstairs in 2006 was acceptable to me our Occupational Therapist, who has always worked on the worst case scenario MND can throw at me, ordered a hydraulic operated bed which alters height, has adjustable backrest/leg positions, and with a “memory foam mattress”. On the first night of receiving the “the all singing/dancing bed” I realised within an hour that the mattress moulded to the shape of hips and when attempting to turn I didn’t have the body strength and really struggled to get out of the indentation. So much so, that I called Jean at 03-30 to get me up and spent the remainder of the night dosing in my wheelchair. The next night we reverted to the old mattress(which fitted fine) and had a very good sleep. It’s important to have items put in place before I actually need them, (as come it will) and then adapt to the piece of equipment as MND progresses.

On the 22^nd I had my inaugural trip in the new car when we did approx. 16 miles to assess how confident I felt with regard, wheelchair anchorage, comfort, and vision. The area I’m seated in is just, I suppose, a glorified van. Consequently there is a bit tyre noise from the rear wheels. As I’m seated quite high up, it exaggerates movement on bends and corners. However on our journey, the wheelchair was absolutely stable. Positioning is high in relation to the windscreen view, but side windows are fine. So I’m inclined to be looking down in built up area (not ideal), but on open flowing landscape great! No problem with comfort. Jean’s initial securing of the chair and my seatbelt took 7 minutes: uncoupling 4 minutes. That’s good and can get quicker with practice. I must say when all harness in place felt “as snug as a bug in a rug”.

In order to strike the right keys whilst typing I’ve had a programme downloaded onto my computer that puts a keyboard on the screen incorporating word  predictor that’s then worked by clicking the mouse. This was originally instigated by the Occupational Therapist who contacted the Speech Therapist who contacted a Clinical Technologist from Glasgow who was in our area and he downloaded it. I’m still using the computer keyboard, but this system is now in place when the time comes that it’s needed (as come it will).

Life with MND - 2012 - Thoughts on Part 1

My Thoughts

I’ve decided this year as MND accelerates I will air my thoughts monthly — (not that I feel I’m about to “fall off the perch”) but as arm, and shoulder paralysis progress it’s getting very difficult to hit the right keys whilst typing (Even with one finger).

During the colder winter months, if I venture outside my muscles really tense up, this, combined with the fast deterioration  meant I’ve not been in the car since early November, however I tried the car (as stated in February) and managed ok.

January

Carer’s package involves a plan to be in place should Jean ever be hospitalised for any reason. That is where power of attorney would be needed, also for DNR (do not resuscitate) this would be adhered to, if I was ever on a life support machine.

February

If the first two months of 2012 is anything to go by then the rest of the year could be a pretty daunting prospect and challenge. However being the pessimist I will try to keep the following saying uppermost in my mind “there is always a way to go if you really look for it”

Again, I must commend the backup professional team from NHS Grampian, and Moray Council, also the providers of my manual, and electric chairs, who to date have always responded quickly to my needs regarding illness, or welfare.

On reflection, up to the end of 2010 quality of life was good.

2011was challenging and character building.

By the end of 2012 I may well be wishing for the more aggressive type of MND to accelerate and bring an end to this “hellish disease”.

 

However quality of life is still quite acceptable and it’s a blessing I’ve no pain.

March

Little did I think, when diagnosed in 05 I would ever see our Golden Wedding on the 16^th  march 2012, but here I am and in reasonably good condition. Jean had provisionally booked a venue, but with me catching the cold in late February it was decided to have a celebration at home from 2pm till 6pm as I get tired and lose momentum by early evening. Regarding food, all of the family pitched in (including Jean who did a power of organising and entertaining and feeding folks staying with us for a few nights). End result was a buffet equalling any professional spread. There was a selection of soups, meats, quiche, and salad. The buffet finished off with a good selection of sweets. An array of foods, with something suitable for all our 42 guests.

Regarding drink (alcohol) I’ve always a good supply of spirit and wine. One of my great pleasures is a malt whisky in a crystal glass (it comes to life when shrouded in crystal) and in the company of family and friends enjoying themselves.

We stated on the invitations that no presents, but donations would be much appreciated for MND (Scotland) - £400 was raised.

We had two very busy weekends with folks staying overnight on both occasions—always nice when I enjoyed it so much and no after effects.

The last week of month, the temperatures were suitable for me to sit out on the patio, always a bonus!

For family and friends I thought it would be informative at this time to add facts regarding my illness taken from MND (Scotland) and MND association.

Currently there are 408 people in Scotland with MND and more than 130 people will be diagnosed by the end of the year.

There are four main types of MND, each affecting people in different ways. There can be a great deal of overlap between all of these forms, so, while its useful to separate the various types, in practice its not always possible to be so specific.

Amyotrophic lateral sclerosis—this is the common form. Prognosis is from two to five years.

Progressive bulbar palsy—affects about a quarter of people diagnosed.  Prognosis is between six months and three years.

Progressive muscular atrophy—affects only a small amount of people. Most people live for more than five years.

Primary lateral sclerosis—a rare form of MND: life span could be normal depending on whether as pure PLS or develops into ALS.

I’ve never asked what type I may have but it will be seven years in June since I was diagnosed!!!

I just take a day at a time now, appreciating what attributes I’ve still left, and work them as hard as MND allows. This still gives me an inner satisfaction and a sense of achievement.

Life with MND - 2012 - Part 1

The start of another year.....

 

January
What a start to the year!! On the first, Jean caught a cold, but in spite of doping myself up with paracetamols every four hours, by the 5^th I’d caught it. Mind, within a week I felt I’d pretty well shaken it off, but called in the Doctor anyway, who decided because of the MND would put me on a week’s course of antibiotics.   

Due to the speeding up and degeneration of arms and hands, I wrote my GP concerning an “emergency carer’s package”. The Doctor, accompanied by a nurse, made a home visit when Power of Attorney and “do not resuscitate” were discussed.

I knew the next progression of my “hellish disease” would leave little room for manoeuvre. As my paralysis trundles on, sooner than I perhaps expected, I’ve had to seek Jean’s assistance in raising my left arm to grip the shower rail on entering the shower, also pulling up my trousers and tying the waist button.
This is a combination of finding it now very difficult to get my arms round behind my back, and thumb / forefinger too weak for finer motor skills. 

February
Monitoring myself so closely, whether through daily exercise or just observations, I notice subtle changes accelerating in what I can and cannot do.

E encouraged by warmer temperatures I thought it time to try getting in and out of the car. I managed ok — fair chuffed!!

On the 22^nd I caught another cold, Jean called in the Doctor the next day, and again he put me on a week’s course of antibiotics. On the first few days of the cold my brain was befuddled and I was totally reliant on Jean to assist with all daily tasks, but then as cold diminished and mind cleared, I fell into my previous routine of independence. It certainly strengthens my firm belief that you need an active, focused, and concentrating brain to achieve my present level of capabilities. 

March
Losing strength in the right arm has posed all sorts of problems, but one of the most imminent is throwing back the duvet and repositioning it so I can cover myself again when getting up to the toilet through the night.  The district nurse took along a sheath attached to a leg bag. I tried the sheath but no way was I happy with it. In the end, I’ve settled quite comfortably to using the bottle without having to get up. Just as well, as in the latter stages of the month I’d totally lost the ability to swing myself in and out of bed using the “grab rails”. This was a big blow to my confidence, independence, and freedom, especially in the mornings, as no way can I get out of bed without assistance.

A note to all readers

Another year of documents from Gordon.

I load these pages as he has sent them to me, with no changes. His documents are his own words and those who have read the blog from the start, will know just how the disease impacts his life. How he remains up-beat I will never know, but here is another year's thoughts and feelings.

Just a note to you readers - I do pass the blog stats on to Gordon, and he is chuffed that so many of you take the time to read his musings/thoughts and impressions. Please do feel free to pass on the Blog to whoever you think may be interested. Also, if you feel the need to email Gordon or comment on his writings, please feel free to do so.

Life with MND - 2011 - My thoughts - Part 2

The second part of Gordon's Thoughts for 2011.

 

 During my more mature years I’ve “dabbled” in my own form of yoga. Involving meditation and relaxation, whether it was the photo that triggered my interest - I don’t know. 

“Mind over movement” has really come to the fore as motor neurones are destroyed and the body gets weaker. Oh, I’m under no illusion that MND will be the winner in the end, but at this stage of my illness concentrating and pinpointing the mind to the part of the body I want to move, works for me and has certainly prolonged my independence to the end of October. 

 

Over the past six months it would have been so easy to give up, and ask for help.

As the year draws to a close it is inevitable as my movements get more “sloth like” than previously mentioned that daily tasks need, at times, a good few attempts to complete.

 “My chill out time” diminishes and it is more important than ever to prioritise what is important to me and to be very aware of my morning ritual. “The wee wise saying” that I referred to in the year 2005.

Here are some meaningful sayings that have helped me so far in coping with my unknown journey with MND:-

1)     One can’t divert the wind, but they can adjust their sails.

2)     You can’t change the past, but you can ruin the present by worrying about the future.

3)     In the middle of difficulty lies opportunity.

4)     Life is not a matter of holding good cards, but sometimes playing a poor hand, well.

Life with MND - 2011 - My thoughts - Part 1

Gordon created these 'thoughts' documents in two stages. I have left them as two 'posts' to hopefully show the progression he seems to want to convey.

My Thoughts

I’m a proponent of euthanasia - If I ever felt that my life had reached what I consider unbearable. At this time it’s the anticipation of indignities I’d have to face up to, like assistance for toileting, showering, shaving, even feeding. I feel at this time that would be “the final straw”.

But remember in 2006 when I lost both mobility and speech within a month I could have well said give me the “blue pill” to end it all, but I adapted reasonably well to my new, and alien world.

 

So I approach the future with an open mind. Maybe there is no condition that one cannot become accustomed to.

As I compose these particular notes it’s September, and after three years of very little deterioration there is now a sense of urgency to record my notes as typing becomes “iffy” because arms and hands are weakening so fast.

From 2007 until mid-2010 all daily chores were a challenge. Now even the most mundane task, certainly if it involves finer motor skills, needs lots of thought, focusing and effort to complete, all the time knowing full well that MND will be the victor in the end.

I see my MND like a spring, whereby the motor neurones being destroyed act as the winding mechanism, so reducing the radius of my daily achievements. Albeit ever so slowly, yet teasingly, tantalisingly, (meaning!  It’s now 15 months since the right arm, and hand started weakening and in that time there’s been many instances when I think it’s come back to normal strength, and suppleness) and yet relentlessly progressing until ending in what I suspect will be total paralysis.

 

It is a hellish disease for which there is no cure — It is certainly “character building” and frightening!!

The influences that helped sustain my independence till the present time, was I feel the book “Mind over Matter” by author “Harry Lorraine”, which I bought at the beginning of my ten year period with the civil service in the mid-sixties. I read this book many, many times, so much so, that to this day it helps me focus, organise my mind, and puts things into perspective. 

The other influence happened when I was at an impressible young age of seeing in a “magazine” an exponent of advanced yoga put a dagger attached to a metal rod to his throat and pushed against it bending the rod with no injury too his throat. This was awesome to think one could control the mind and muscles to such a degree. 

To be continued....

Life with MND - 2011 - Part 3

October
I had two upper front crown teeth fitted at the dentist’s. Normally I get my six month examination done by tilting the head back from the manual chair I use when visiting, but on these occasions it was two, half hour appointments, so I managed to transfer from my manual to a special tilting chair adapted for disabled — no problem! And now I have the confidence to smile again. (I find that if visitors see me happy and smiling then they respond in a similar fashion).

 Because of my on-going deterioration in the left hip I had a visit from the Occupational Therapist affiliated to the suppliers of my wheelchairs, who measured me up for a narrower manual chair with a gel cushion built up on the left side. 

Jean had a two night wee break away from her caring duties, so Ross came in for sleepovers. Coped well, but found having to do a little more by my self was tiring!!

November

Fell whilst dressing because of progressively  weakening right arm. It inadvertently touched the “on button” of the electric chair, followed by my shirt cuff catching the “joystick” so propelling it forward and knocking me down.

The light switches are also getting a bit of a problem as the arm struggles to reach them at times. I have to get Jean to assist me to get my heavier tops on over my head as my arms weaken. They are ok when close to the body, but the second they move away, whether it’s out or upwards, they become a bit of a disaster.

December

The strength and mobility of “my trusty right arm” has really weakened this month, plus further deterioration in the left has meant Jean has to help a bit more in my dressing. In a way it’s a relief!! The thought of losing a bit more of my independence is I find, not as bad as anticipated!

Jean is always more than willing to help which is great, but five years in wheelchairs, plus my age, it would be so easy to lose my suppleness, so I’m avid believer in - if you don’t want to lose it, use it for as long as possible.

To summarise 2011

I’d say it’s been my toughest challenging year since being diagnosed.  Consequently I’ve had to try and upped my concentration yet another notch to maintain a reasonable level of independence. 

Although, I now tire easily it was great having family and friends over the festive period.

 

Aye life and a wee dram is still precious!!!

Life with MND - 2011 – Part 2

July

My “trusty” upper right arm, and hand (which has been more or less normal in suppleness, and strength since being diagnosed) is now weakening fast: it has caused many additional problems, which at this time I’m still managing to adapt to, but feel there is little room for manoeuvre now as MND bites deeper. I’m also experiencing, especially in the evenings tiredness, and fasciculation’s (visible muscle twitching under the skin) usually a sign of further weakening in upper arms.

August

Exercise going well in spite of the ongoing deterioration: time wise I’m doing about 40 minutes a day five days a week. My GP made a referral for me to attend the Respiratory Clinic at Raigmore Hospital.

First let me say, I’m comfortable with my respiratory function at this time: where the referral came from I think was I had a “home visit” from the Physiotherapist just after lunch one day: normally this is my time “to put the feet up for an hour” to let my lunch settle, but in this instance I was doing exercise, which may have triggered a cough.

Anyway the chest x-ray was fine, and so no need too pursue at this time. Again it’s nice to be in the “loop” if only for any future visits. The Speech Therapist called to see how I was coping with the Lightwriter as the arms, and hands weaken, but both of us were of the opinion that at this time no need for change. The Dietician visited the following day.

Fell whilst transferring chairs. Jean had to call on a neighbour to get me back up on my chair – my last fall was October 2009. What I put it down to was a combination of a lapse in concentration, plus as hands get weaker I didn’t have a firm enough grip on arm rests of the chair. It’s a reminder that I must be very focused in my ever changing condition. A “home visit” from the Optician and no need for change of glasses—Hooray!  At least the eyes are not deteriorating!!

September

A fairly good positive month although my arms (especially the left) are getting thinner, because of muscle wastage: consequently I’ve dropped around two pounds in weight: now weigh in at eleven stone. Jean had her annual four day break at our timeshare in Aviemore. Allison, our daughter came up from Kincardenshire to care for me. My one stipulation to her was relax and observe — don’t help unless asked, as I still get a great “buzz” from persevering, and completing tasks on my own.

 

Conclusion — all three of us gained benefits from Jean’s break in different ways.

Life with MND - 2011 - Part 1

This is the start of another year's notes. There are a few written this year, I will upload them over the coming days.

January

I’m breaking a long standing tradition at the beginning of this year in that I’ve made no New Year resolutions because of the on going progressive weakening of upper arms and hands. In the past I’ve usually fulfilled any resolutions made, now feel I’m no longer in control of my destiny. I’ve managed to wean myself off my prescribed medication to help me sleep—fair delighted!!

March

Made an appointment with my GP for annual pill review and samples of bloods to be taken. I have had to introduce a few variations with regards my showering so that I can keep my independence. I’ve developed a tendency whilst in the manual chair to leaning to the left: this appears to be caused by the wastage of muscles in the left hip area.

April

Having contacted the GP regarding muscles spasms in bed it was decided to up my medication “Baclofen” from 130mg to 140m,g before bed –it’s solved the problem! 

May

It is now nine months since my last assessment at the Rehabilitation/Rheumatology Clinic. As I’ve no speech I always write reports for all “Professionals” involved in my illness. Here is a condensed version.

Since my last appointment there has been a steady on going deterioration in, shoulders, arms, hands, and legs.  I am still fiercely independent ( bearing in mind MND dictates what is permissible) but I admit to being a bit apprehensive about what the future holds when I can no longer adapt, and improvise to further disabilities.

Learning to accept what you cannot change has led me to a reluctant form of contentment, which is impossible to describe unless one has been there. However quality of life is still very acceptable, so I see myself as pretty lucky!

At my request the Physiotherapist made a “home Visit” to advise on alternative supple type exercises, which may be beneficial to me as the shoulders and arms weaken.

She also requested that we submit a “carer emergency scheme” for any unforeseen medical problems happening too Jean, such as in 2009.

Life with MND - 2010 - Part 3

Another update from Gordon about 2010 and life with MND

 

In my notes to date I’ve only mentioned Jean briefly—my carer. I’d say, it’s been harder for Jean to “get her head round” my illness than it’s been for me. Having our minds set on “winding down” to our retirement with a wee bit of money put aside for “rainy days” (an expression used to cope moneywise with the unforeseen items) and the occasional holiday etc.: we thought ourselves very lucky.

But as previously quoted “what’s in front of you won’t go past you”.

I suppose 2006 was the worst for both Jean and I with losing both speech and mobility virtually at the same time.

Lack of mobility I found frustrating, but manageable, loss of speech however, was very difficult in the early stages as I was still trying to come to terms with my lack of communication.  This lead to the occasional “tiff”. My means of disapproval with Jean at this time was eye contact — (I’m sure Jean would say my eyes conveyed in some instance much more than ever words could say).

My present quality of life however, would fall far short if it were not for Jean’s support and unfailing attention when needed. Although still fanatically independent at this time, there are procedures that I cannot do and that’s where Jean steps in to help.

In the past three years Jean has not “had her sorrows to seek regarding her health” whilst on the other hand my last appointment with my GP with a medical complaint was March 2007. Since then it’s been on a “feel fine basis” and annual pill review with bloods taken to confirm that prescribed medication is having no ill effects.

Living with MND - 2010 - Part 2

This is a further update from Gordon's notes on 2010

 

Eating

Like most things I do, eating involves a strict procedure, focusing and concentration on my every move.

1)     Get seated comfortably.

2)     Ensure spoon, or fork are as near to right angles when entering my mouth so that food goes in cleanly ( this is usually quite hard to accomplish)

3)     Make sure there is no overhang of food on the cutlery, as lips and tongue now have a problem in collecting and retrieving any food that doesn’t go directly into the mouth.

4)     Chew food well and empty mouth before next mouthful. Chewing is mainly concentrated on front teeth as tongue is now unable to push food to the sides for chewing.

5)     It’s not uncommon for me at mealtimes to get a bout of coughing followed by a sneeze and “runny nose” this seems to act as a safety procedure for preventing food going down the windpipe.

Eating out in a restaurant is debatable, as I feel I’m drawing attention to myself, however if I choose selectively from their menu, like pasta or rice dishes, then I feel any shortcomings aren’t as noticeable.

Contentment

First let me explain my meaning of the word. For me, it’s a feeling of inner satisfaction accrued over my lifetime. I’ve thoroughly enjoyed my 50 years in horticulture, from commercial growing through to management, and ultimately forming my own landscaping business. Over the 50 years I’ve been involved in numerous tree and shrub planting schemes, whether at the planning or supervisory stages. Finally it was “hands on planting” when in my own business. This started in the late sixties and ended in 2002. “ The icing on the cake” is to see them now maturing, some now over 30 feet tall.

 

I feel I’ve left my mark for future generations, and have done my bit for “the environment”-- What a grand epitaph eh!!

Like the song says (regrets I’ve had a few, but then again to few to mention). I’ve had a good and fulfilling life which has lead me in many unexpected directions, plus Jean and I are lucky that we have a supportive and caring family. What more could we ask for!!

Finally, contentment comes to “he who learns to bear what he cannot change". 

Living With MND - 2010 - Part 1

This is another catch-up one, enjoy...

 

January

Sleep pattern has slowly improved in that I now get up to an hour of undisturbed sleep without having to turn because of pain in hips. For the past three years I’ve religiously massaged hips every second night with “glucosamine gel” . Whether it has helped — I don’t know, but  it is a discipline I’ve opted to do.   

June

I’ve been lucky, in that, the past three years body strength and deterioration has been slow. Now however, progressive paralysis in shoulders, upper arms, hands, and feet whilst turning: say, from car to chair, is most noticeable in that there are instances when my feet feel like they are “welded to the ground”.

Also I’ve found it difficult with regards my hands. What has served me faithfully for the past 72 years, now, though absolutely no distortion or pain, constantly let me down on the finer motor skills.

December

The deterioration has served up many additional problems, but through time I’ve improvised, and adapted to retain my past level of independence. – Mind, I think the innovative ways, and adaptations are drawing to a close as MND bites deeper.  

 

My Thoughts

The beginning of a year is traditionally when folks see it as an opportunity for lifestyle changes via New Year resolutions.  Mine would be to try and retain my present level of independence in the coming year.

One of the very few conditions that seem to have improved is that, through experimentation I’ve been off my prescribed nasal spray to help my breathing for three months: I found my inhaling was acceptable, but my exhaling was very shallow. “Diaphragmatic Breathing” (like opera singers would practice) I feel helped me.

I’ve change my exercise schedule in that I now start with shoulder, abdominal, and pelvic in bed, and then go on throughout the day in short five to ten minute periods. It’s no use just executing the exercises automatically, and remotely: I feel one has to really focus on the muscles being worked, and having completed it: hold for a short period, before relaxing. I now mainly do exercises to try and keep the body reasonably supple.— but only of course if MND allows!!

I’m a strong believer, to achieve a satisfying and good life there has to be self control.

Living with MND - 2009

First of all an apology to all Gordon's readers, I have been away for a few days and unable to upload his past thoughts. I will do my best to catch up and keep up your interest. Below is another historical instalment from Gordon. One thing Gordon does not say in his life with the lightwriter (a new one appeared in this note) is how much fun he has in trying to get it to speak the words typed 'correctly'. As some of you may know, machine speech is a bit false and jarring, so Gordon plays with spellings to see if he can 'correct' its speech, with sometimes rather funny results. He also tries to get it to 'speak doric', our local dialect, which, unsurprisingly it fails to do, but the machine tries and it never fails to amuse all visitors with its funny squeaks. All bits of mischievous light entertainment, which I am sure you will agree, he is very much entitled to try.

 

April

Jean’s mystery virus reappeared after an absence of nearly tree years, and so she was admitted to “The Infectious Unit” Aberdeen Royal Infirmary for eight days of tests: result was no further forward on finding the cause of the virus. 

August

Took collection of the new updated “Lightwriter SL40” speech communication aid: it has the facility to remember the words you use and the way you use them, so as one begins to type it will predict, and display words that you are likely to say next.

I had my assessment appointment with the Rehabilitation/Rheumatology Clinic. No real marked change in my condition so next visit in nine months time.  

September

Jean admitted to A &E for exploratory examinations: kept in hospital for three days: result was they found she had pneumonia, and it could take up to six weeks to get over.

October

Whilst Jean was in hospital, Ross, our son was coming in for “sleepovers” Unfortunately; he had a bad cold which he passed onto me.

December

Overall 2009 showed very little deterioration: weight has remained stable, and quality of life is good.

My Thoughts

With forward planning on her “feeling fine days” Jean had prepared freezer meals for emergency circumstances, such as being admitted to hospital on very short notice: it is part of our “emergency plan”.

I’m fiercely independent. My motto being (never trouble another for what I can do for myself) Jean and Ross are both very good at stepping back: yet so attentive when needed. The vast majority of people instinctively want to help when they see me persevering with any of my many daily tasks, but it gives me a great feeling of accomplishment when I complete it.

I suppose this year I’ve really upped my supple exercise routine. Anyway it’s a discipline, and with approximately 15 hours a day in wheelchairs with no pain I feel it’s worthwhile. At times I feel I’m not as supple as in the past, and am inclined to blame the MND, but I forget my age may be a factor.   

On hindsight loosing my speech was worse than my mobility: this really surprised me! However I consider I’ve adapted pretty well with communications through the use of what I’d call modern technology: mainly my Lightwriter, emailing, and texting. I also practice hand writing: at times its fine, others it’s a bit illegible, but overall Jean can usually read my notes.

Regarding the Lightwriter, It’s now three years since I got the original one so I wrote a letter to my speech therapist for “feed back” along similar lines to the following.

First let me say I’ve just taken on board what is beneficial to me at this time: “the full scope of the machine is far to clever for me”

I’m lucky I’ve a genuine interest in others, so if I get prior warning of our many visitors I store questions in readiness, and feed them in during the course of our conversation. Alternatively, I inject informative remarks and questions just like any normal speech.

The Lightwriter is ideal for up to four in the company, more than that I’m inclined to sit back and listen, punctuated by my occasional remark.  Outside in bright sunlight is a bit of a non-starter as people usually read the display screen as I type, but with my slow typing its easy to lose “the thread” of the story, or sentence.

As stated previously I caught a cold in October—the first real cold I’ve had for years! It’s amazing how my body reacted: because I’ve no ability to get rid of mucus, and phlegm –i.e. spitting, blowing nose etc. it exited in my bowel movement. (I suppose a bit like a baby)

Whilst on the subject of toileting as other muscles weaken I believe my bladder, and bowel muscles have also weakened. “To avoid, and minimise any accidents” the minute I feel a need for the toilet — I go! Because I’m anticipating going, and it can take me five minutes to be looking down at “the porcelain”--- and we all know “how long a minute is depends which side of the bathroom door you’re on”