Editor's note

This will be the last update to Gordie's Blog.

If any reader wants more information on MND please see the following resources which I hope will help:

MND Scotland

www.mndscotland.org.uk

MND - England, Wales and Northern Ireland

www.mndassociation.org

Gordie's last post

I'm sad to report that Gordie (Dad) passed away peacefully at home late on the evening of Sunday the 4th of December 2016. After a long battle with MND - eleven and a half years since being diagnosed, Gordie finally succumbed to his illness. Jean (Mum) was with him, tending to him up until the very end.

The last 6 months had seen a marked change in Gordie. He had become a lot less responsive and very withdrawn. The wicked sense of humour was no longer visible and the normally twinkly eyes had lost their sparkle. Now unable to communicate, due to his ever increasing disability, he was truly trapped inside his body.

Gordie was inspirational, determined and positive for most of his illness. He got such a buzz from writing this blog and seeing how many people read it. He hoped that it might help other sufferers, families of sufferers and health professionals to understand what he and other sufferers were going through. He also wanted to demonstrate that he still had a zest for life and that the developing disability was all about adapting and overcoming the many challenges. What a legacy he has left us and we are so very proud of him.

We are convinced composing his updates really did give him purpose. On my last visit home I showed him that the blog had over 7000 'hits'. It was about the only time he got animated that weekend.

On behalf of Gordie we would like to give special thanks to all those who cared for him over the years and supported Jean to allow him to remain at home throughout his illness.

  

We are all very sad at his passing, but take comfort in the fact that he is finally at peace.

His was a life well lived, rest in peace Gordie.

An update on Gordon by his daughter

February 2016 

Dad had a new catheter fitted that was the first time that it had been a scheduled call,  previously they have had to be replaced due to them bypassing. In an effort to try and avoid the bypassing and the inconvenience it caused to the health visitors and Marie curie nurses (if it happened during the evening) It would appear that the routine Mum has adopted of flushing the catheter on shower days has removed the problem and the need to have the catheter changed so often. 

Emergency respite care - there was a meeting to discuss emergency temporary care if anything were to happen to Mum. Last March Mum was admitted to hospital as an emergency. It highlighted an issue as far as Dad's immediate care was concerned. My brother Ross was working in an area that had no mobile service... I live in Aberdeen a 2hr drive away it was a scramble phoning around the few people that might be in a position to provide care for Dad. We have to remember that just because he can no longer communicate doesn't mean he's challenged mentally. He knows exactly what is going on - anyone popping in might think he's just sitting in his chair all day but in actual fact all his requirements, although not onerous, are very specific and need to be carried out in a certain way that is tried and tested and has been adapted and tweaked to accommodate the progression of his disability. So what I'm saying is for him to be comfortable, not just anybody can look after him, it needs to be someone who is familiar with his routine.

The Respite home in Forres called Taigh Farrais provides a one on one service - Dad's needs were reviewed and an overnight stay was organised which was tailored to his requirements.. Just as a wee trial.

Following a visit from the Dietician it was decided that Dad's fluids should be administered by use of a pump. The pump gets connected to his peg around 08.00 in the morning and runs for 12hrs so he receives fluid slowly all day. Dad is still be able to eat and his fortified milk is still administered via his peg. It was hoped that the drip feeding would reduce the amount of fluid Dad puts back up but this hasn't really been the case - at least we know he is getting the right amount of fluid daily.

March 2016

Dad went to Tigh Farris (Respite home) for 2 nights at the end of March. Logistically it needed a fair bit of planning. The facility itself is excellent, but Dad still likes the familiarity of home surroundings and would feel most comfortable if carers could come to him at home to look after his needs.

April 2016 

Mum and Dad had a visit from Diane Fraser, the MND clinical specialist. Diane's visits are always very welcome, she has so much knowledge on MND and the various ways to adjust and improve quality of life. Diane introduced a new colleague who will be able to help with the workload - it's good to see that funding has been granted to support this essential service.

Spending 14 hrs a day in his wheelchair used to cause Dads legs and ankles to swell so he has been wearing elastic stockings for a number of years. Putting on the stockings could be tricky though. Following a review Dad stopped wearing the stockings and to date his legs and ankles have been fine.

May 2016

On the 16th May the Dr was called in for both Dad and Mum.. Dad was running a temperature which Mum was treating with paracetamol. Mum was feeling a tightness across her chest so was given an ECG and prescribed a spray for angina attacks. 

17th May - Claire the speech therapist arrived with a special mouse for Dad to see if he might be able to regain control to allow him to get back on to the computer - his only way of communicating.

The Dr had to be called in the evening for dad who was putting up brown mucus. Dad was diagnosed with a chest infection and penicillin was prescribed. 

19th May - Claire came back to see how dad was getting on with the new mouse. Dad asked for it to be taken away...  It could be because he was feeling poorly that maybe he hadn't really given himself long enough to try it out, he has so little power and movement now I think he felt it was of little use. It's looking like we are running out of options for communicating. Claire will be supplying a perspex board which has coloured letters on it that Dad needs to stare at with the operator suggesting the letter they think he is looking at. Once a letter is confirmed he would look at the next letter and so on...You need a real knack to be able to use it and the angle Dads head is at, combined with the difficulty in seeing his eyes makes this a very difficult and frustrating tool to get to grips with.

June 2016

Mum was admitted to hospital as she had had a mild heart attack, my brother Ross had to be drafted in to care for Dad while mum was in hospital. It must have been awful for Dad, Mum is his primary carer and is probably best placed to know what Dad wants - the lack of communication is a real problem both mentally and physically for him. I'm sure he wanted to ask questions about Mum's welfare and upon her return offer his support and a comforting word but can't. I fear that Dad now feels he has become a burden, acknowledging that when Mum is not feeling great, she still battles on to fit in with his daily routine.

The wheelchair people came in to review Dads positioning in his wheelchair, his head slumps over to his right side and downwards making eye contact a real issue, you need to crouch down to see his eyes. It was decided that he would get a new back for his chair that would be molded specifically for him and hopefully support him enough to improve his posture.

At the moment if we put his hand on the controller of his chair, he can still adjust his it to tilt back and forth himself. 

July 2016

Mum was admitted to hospital again, I was able to leave my work straight away to get up to Forres, Dads brother and his wife looked after him until I arrived.  The option of Tigh Farris respite home was not an option for Dad on this occasion as there was no room for him, but as mentioned previously he is probably best at home anyway. Mum had been struggling with her new medication since her heart attack in June making her dehydrated and light headed. Her medication was reviewed and she returned home after a day in hospital. 

For someone who liked to be in control, this set of events must be scary for Dad, because he can't ask any questions relating to Mum or tell anyone what he needs. This makes him very dependent on a small group of people. 

August 2016

Concerns for Dad's and the carers safety while using the stand aid (the piece of equipment that transfers him from his chair to the toilet or to his bed) meant that a review of the stand aid was carried out, the result was that the stand aid could still be used, but if staff felt it necessary they would use the Oxford lifting device which requires slings to move him. 

Mum got rid of their disability car which had a ramp that allowed Dad to drive his electric wheelchair in and out of the car. It has been a long time since he has been in a position to be able to safely negotiate getting into the car and its not something a third party would safely be able to do for him.

The new back for dads wheelchair arrived. Its much more molded and will take some getting used to, the downside is that he is no longer able to control the movement or the tilting mechanism on the chair and so has lost that small piece of independence. The wheelchair people are trying to see if there is anything that can be done.

All in all a fairly stressful few months with Mums poor health and Dads continuing loss of function to the point of not being able to carry out any meaningful movement. It's now the middle of September and I'm pleased to report that Mum is on a very well deserved and much needed holiday for a week.

Gordie’s blog - February 2016

Now written by Gordie's daughter, Alison.

 

Sadly the time has come where Gordie (Dad) is no longer able to type up his thoughts for his Blog. Movement in his right hand is minimal and it takes a huge amount of effort to type a few words now. Dad has resigned himself to keeping what strength he has for typing to communicate with Mum and the surrounding Care Team.

Through my phone calls with Mum and overnight visit every 2-3 weeks I’d like to keep the Blog going for Dad. Checking the Blog hits always gave him such a buzz and he always felt that if writing down his experience with MND was ever a help or comfort to a sufferer or carer then it was a job worth doing.

Week commencing 15.02.16 - Dad had a new catheter fitted it’s the first time that he has reached a scheduled replacement as previously they have had to be replaced due to them bypassing. In an effort to try and avoid the bypassing and the inconvenience it caused to the health visitors and Marie Curie nurses (if it happened during the evening) the routine Jean has adopted of flushing the catheter on shower days has removed the problem of the catheter bypassing and the need to have it changed so often. 

Emergency respite care - there has been a meeting to discuss emergency temporary care if anything were to happen to Mum. This time last year Mum was admitted to hospital as an emergency and it highlighted an issue as far as Dads immediate care was concerned. My brother Ross was working in an area that had no mobile service. I live in Aberdeen a 2hr drive away and it was a scramble phoning around the few people that are in a position to provide care for Dad. We have to remember that just because Dad can no longer communicate doesn't mean he's challenged mentally - anyone popping in might think he's just sitting in his chair all day but in actual fact all his requirements although not onerous are very specific and need to be carried out in a certain way that is tried and tested and has been adapted and tweaked to accommodate the progression of his disability. The Respite home in Forres called Tigh Varis provides a one on one service and it is hoped that Dad's case will be reviewed and an overnight stay will be organised which will be tailored to his requirements. Just as a wee trial.

Excessive fluids - 19.02.16 Mum has applied a patch no bigger than a plaster to Dad to see if it helps reduce the egress of fluid from his mouth and nose. Some days fluids come out as quickly as they are being administered and it can be a full time job wiping his nose and mouth and not ideal for Dad. So hopefully these patches will help stem the flow and provide him some respite.