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.