Living with MND - 2005

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

 

January

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

February

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

March

A further CT scan, which again showed no abnormality.

May

An appointment with the Neurologist at Aberdeen Royal Infirmary

June

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

August

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

September

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

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

October

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

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

November

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

My Thoughts on 2005

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

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

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

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

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

"Look to this day,

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

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

So live this day well."