Life with MND - 2012 - Part 2

April

Early in the month Jean had a nausea, listless morning so having breakfasted me went back to bed for a few hours. It made me realise just how reliant I’ve become on her. Since then we have activated Quarriers , an organisation who put you in touch with carer teams of people.

Constipation, since the beginning of the year has become a problem - again a first in my lifetime! Without going into much detail, this I feel has developed through the “pushing muscles” of the bowel continue to weaken, the Dr. has initially prescribed Senokot to see if it helps.

Attended my annual visit to the chronic oedema clinic and got new elastic stockings. The stockings are certainly keeping the swelling in the legs, and ankles to an acceptable level. 

May

Hand written entries in my diaries getting so I can’t read my own scrawl, just another adjustment I’ve to make in my life.

The Occupational Therapist and engineer affiliated to wheelchair care have visited, at my request, to revise my needs, especially on new types of arm rests as shoulders and arms weaken. 

My toilet, which washes and blow dries me, had its annual service. It has been great and helps retain my dignity, which I find so important.

June

Getting in and out of our car has become a serious problem as shoulders and arms weaken, so went online to source second-hand mobility vehicles. Settled for Fiat from garage in Elgin. Jean then did all negotiations to acquire it.

Had lady representative from Quarriers visit us regarding setting up caring team to come in so Jean can get occasional respite.

Although the present bed I was using since moving downstairs in 2006 was acceptable to me our Occupational Therapist, who has always worked on the worst case scenario MND can throw at me, ordered a hydraulic operated bed which alters height, has adjustable backrest/leg positions, and with a “memory foam mattress”. On the first night of receiving the “the all singing/dancing bed” I realised within an hour that the mattress moulded to the shape of hips and when attempting to turn I didn’t have the body strength and really struggled to get out of the indentation. So much so, that I called Jean at 03-30 to get me up and spent the remainder of the night dosing in my wheelchair. The next night we reverted to the old mattress(which fitted fine) and had a very good sleep. It’s important to have items put in place before I actually need them, (as come it will) and then adapt to the piece of equipment as MND progresses.

On the 22^nd I had my inaugural trip in the new car when we did approx. 16 miles to assess how confident I felt with regard, wheelchair anchorage, comfort, and vision. The area I’m seated in is just, I suppose, a glorified van. Consequently there is a bit tyre noise from the rear wheels. As I’m seated quite high up, it exaggerates movement on bends and corners. However on our journey, the wheelchair was absolutely stable. Positioning is high in relation to the windscreen view, but side windows are fine. So I’m inclined to be looking down in built up area (not ideal), but on open flowing landscape great! No problem with comfort. Jean’s initial securing of the chair and my seatbelt took 7 minutes: uncoupling 4 minutes. That’s good and can get quicker with practice. I must say when all harness in place felt “as snug as a bug in a rug”.

In order to strike the right keys whilst typing I’ve had a programme downloaded onto my computer that puts a keyboard on the screen incorporating word  predictor that’s then worked by clicking the mouse. This was originally instigated by the Occupational Therapist who contacted the Speech Therapist who contacted a Clinical Technologist from Glasgow who was in our area and he downloaded it. I’m still using the computer keyboard, but this system is now in place when the time comes that it’s needed (as come it will).