Life with MND - 2013 - November 18th to 30th

Jean and I, appear to have accepted the PEG with no problems. Jean, getting used to the sequence of ensuring tube is closed between syringes and me with no side effects. We started the procedure-under instruction, with flushing water through the PEG and have now graduated to200ml of a nutrient feed, plus flushing with 600ml of water daily. The dietician said ideally, she would like to a build up to 2000ml per day, but 1500ml acceptable. So, to date, with my drinks of water, honey and lemon through mouth and the PEG we have reached 1300ml. With Jean feeding me all three main meals daily, I feel I’ve reached a good balanced diet and upped my fluid to a satisfactory level. In fact, If truth be told, I’m enjoying meals more now than in the past three or four years. I really feel it’s because now I’m totally relaxed while being spoon fed!

My old and trusted electric wheelchair over the past 7 years has now been fitted with a reclining back-rest. This means I can tilt back the chair and once again get eye to eye contact with family and friends, and as we are having all the family on Christmas day it’ll be nice to be involved again and not, as in the past, I always felt a bit isolated.

Another nice experience to end the month I’ve been contacted by the Herald newspaper to compose a 600 word article on ‘living with MND’. This initially materialised because of my blog - it's certainly a flattering ego booster for me.

The Herald correspondent asked if she would compose the article from information on the blog or if I wanted to do it. As mentioned in my personality description, I always like a challenge so without hesitation said I’d attempt it. I will be keeping you informed of how I get on!

Life with MND - November 2013 - 8th to 17th

11^th-the wheelchair technician came to uplift the modified chair and left my old one.

12^th Well, today’s the day for me to be hospitalised; we opted to use our own car to get there, although NHS said they could arrange transport.

13^th was the appointed day to fitting the PEG- (described in September)-the procedure went well, with no complications that I was informed of.

Luckily, I was in a room with only two other patients and no real restrictions on visiting times, so Jean was able to come in between 08-30 and 0900hrs to wash, dress, feed, and take care of my daily needs then left at 2000hrs- nurses were very caring, and attentive, but with a demanding work load at times trying to get my message across was too time consuming for them.

On the Thursday night the nurses decided to put me into bed at 19:30hrs - well that was the start of a very restless 15hrs in bed. Plus for about 10 of these hours I had to get the nurses to turn me from right side onto my back and vice versa every hour because of  spasms in my right hip. Bearing in mind whilst in bed I always feel at my most isolated and vulnerable. By 0800hrs the following morning I had allowed the past night to ‘fester in the mind’ and had worked myself into a state of agitation - it was then I decided I was going home that day even if I’d to sign myself out.

When the Doctor did his rounds Jean told him I was going home. He said he was happy with the PEG, so I came home on Friday the 15^th.

On conclusion, whilst in hospital it certainly made me appreciate Jean’s care and attention, and the benefits of the adaptations in our home to help me achieve a still acceptable lifestyle.

Life with MND - November 2013 - 1st to 7th

November
Catheter fitted last day of October, removed 1^st November due to severe pain whilst passing urine. The nurse came to the conclusion it may be spasms caused by the MND, but needs further investigation.

4^th had ‘home visit’ from physiotherapist mainly regarding weakening neck muscles.

5^th visit from Occupational therapist, and technician both affiliated to wheelchair care with a new chair previously measured up and adapted to my changing body form and posture.

Having thought long and hard about the new chair prior to its delivery I emailed the O T- here is a condensed version.

As MND  reaches a critical stage, for me quality of life and getting the best out of every day and retaining the last semblance of independence is my ultimate aim, and if I find the new chair restricts me in any of the above then I will keep my ‘old faithful’ electric chair.

The new chair arrived, but I found the (strongly advised request in the home) to use the footrests and shoulder restraints to help keep my head up, deprived me of so many pleasurable daily pursuits that I’ve opted to keep my original chair. However, wheelchair care from Inverness – bless them! Who always have my interests and welfare to the fore, have said it may be possible to put a taller back which can recline onto my old chair. This would open up a world again in that, getting eye to eye contact and watching  TV .

I’m not concerned about the fitting of the PEG (mentioned in previous posts), but being hospitalised and communication in an alien environment with what I’m sure is a very busy staff is a concern. But, as always, forward thinking kicked in and I prepared an informative sheet for hospital staff of key words and signs. Here's hoping....

Life with MND - 2013 - October

October

On the1^st,  the district nurse took bloods and because of downturn on26th Sept. I’ve needed Jean’s assistance with a bottle regarding bladder movements, so thought it time for nurse to explained about catheter, if I’d to go down that road.

For 17 nights I couldn’t turn in bed, because duvet too heavy so got Jean up between 0200hrs and 0500hrs and spent rest of night sleeping in chair.  Because sleeping in both bed and chair was to an acceptable level, I wasn’t particularly tired throughout day, with 20 minute naps in morning and early evening, and the usual 45minutes after lunch.  Switching to lighter duvet on 15^th meant back to my normal routine of getting up at 06-30hr and more important, Jean got back to undisturbed nights from me again, although her own illnesses gets her up most nights.

Although I’ve upped Jean’s work load considerably over this month with silly wee items as arms reach the point of being virtually useless she remains uncomplaining,  to tending my precise needs for perfection in placing items, which for  the non- disabled must be hard, but it’s essential to retain the semblance of independence I have left.

On the 28^th we had a meeting with Doctor concerning PEG (explained more in blog of September 2013). Herewith condensed information to him:

With Jean’s preparation of food I’ve no problem with swallowing.

However for the following reasons I think a PEG would be beneficial:

1) all food is sucked not chewed, because of constantly biting inside of mouth.

2) My trusty right arm which lifts the spoon to my mouth is incapable of always reaching it.

3) Also my intake of fluid falls short of satisfactory, and the now continual chin on chest due to weakening neck muscles restricts swallowing to a degree.

In the last few days have had to ask Jean to spoon feed me.

On the 29^th had a ‘home visit’ from Claire, our speech therapist, and Wilma  from Glasgow with a variety of communication options should I  require them in the future.

District nurse gave me the winter flue jab, and fitted a catheter.

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

You will need Adobe viewer to view this file.

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!!

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.