Living with MND - 2006

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

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

MND Scotland
MND in England, Wales and Northern Ireland

January

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

February

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

March

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

April

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

May

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

June

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

July

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

 August

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

September

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

October

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

November

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

December

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