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.