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Sunday, May 27, 2012

M.S. Week....

Starting today, May 27, it is National Multiple Sclerosis week. On Wednesday (June 30) it is World M.S. Awareness day. My mother was a victim of this horrible disease. She had symptoms way back in the late 1940s but no diagnosis until the mid 1950s. The disease mainly affected her left side, with her being completely paralysed by a 'flare up' of the disease when I was 6. She learned to walk again but it took a number of months.

During my primary schooling she would spend a number of weeks in hospital each year receiving treatment. Through sheer will power I believe, she still managed to give me a fairly normal life. In my school there were 3 of us with parents who were afflicted by MS. The other 2 were fathers and their health deteriorated rather quickly and they were then confined to wheelchairs. These man died relatively young. My mum did not use any aids in those years but still had a definite weakness of her left leg and arm.

After my father died in January 1967, my mother's MS stayed in remission but she was plagued with chest infections and other severe colds. I recently found an old report card of mine from 1968. Some of my teachers wrote that my absences affected my marks. I don't think they realised why I was away; it was because my mother would get so ill and I had appointed myself as her carer.  By the 1970s her immune system was working so much better and the infections seemed to stop.

My graduation Dec 1970; mum's health had improved

The MS followed the cycles of 'flare up' and then remission. Each time this happened, it would take a bit more of her mobility. But she was a stubborn and determined fighter and she felt that she was one of the 'lucky ones' as she was still able to walk. But it wasn't always easy I suspect. She once described to me that she would often get the feeling that she was walking in a giant space and that her balance 'mechanism' wasn't working.

 Then towards the late 1970s, my mother experienced 'blackouts' . Investigations by the neurologist confirmed that she had a complication probably caused by the MS; she had a form of epilepsy. So more medications and visits to the hospital. From 1979, my mother lived with  my family. For over 15 years she enjoyed her independence living in her granny flat. If she became ill, we were there and able to take care of her. Otherwise she went out with friends, entertained friends at home, enjoyed her 2 granddaughters (DD1 and DD2), cooked, read, did puzzles, watched soap operas and tended her pot plant garden. She now grudgingly started using the walking stick that had been recommended by the physiotherapist.

In the 1990s it was discovered that mum had osteoporosis which was the outcome of the strong medications that she always said helped her to get back on her feet in 1957. This painful condition in turn led to broken bones and  2 major operations.  Again, rather grudgingly, mum finally agreed to use a walker; a specially made one that is much taller than the ones you see people using in shopping centres etc. She maintained that she would never use a wheelchair as that 'would be the beginning of the end', she said rather defiantly.

Then in 1998, my mum just 'ducked' out of her bedroom into the kitchen to turn on the jug to make a cup of tea. She just wore her socks not the rubber soled slippers and she fell, breaking her femur. This led to time in hospital and then rehab to get her walking again. I was called to a meeting with all the health professionals that were providing care. The gist of the meeting was to tell me that mum was not responding to treatment. These people were very good...they listened to what I had to say. I just asked them could it be the MS flaring up again which was preventing her from getting mobile again. The tests etc were organised and that indeed was the problem.

The next step was hard for my mother and for was recommended she go into 'residential care'. This happened at the end of 1998. She hated it at first but eventually settled in and made lots of friends particularly among the staff. And that staff gave her excellent care. We also bought her a customised wheelchair as walking had become so difficult (and dangerous with her falls).

2000; My brother and I took a cousin of mum's to see her at the nursing home. The 2 cousins hadn't seen each other for over 60 years!

 Then the disease flared up again; she started to have trouble swallowing as the muscles of the throat were affected. She hated the 'mushy food'. Then she found it too difficult to speak... her doctor organised for me to take her for a CAT scan of her brain/brainstem. The brain stem area showed as a white, atrophied area; the disease was winning.

I used to go to the nursing home after school to try to get mum to eat. I would only be able to get her to eat about 4 teaspoonsful. Eventually she got pneumonia and a few days later she slipped away at age 77; she was tired of fighting. From what mum said about having early symptoms of the disease, we worked out that she lived with it for 55 years. In the eulogy address that I gave, I described her as stubborn and determined, but she was also incredibly brave.

MS often strikes people in their 20s but 2 of my friends were diagnosed when they were in their late 50s and getting ready to retire. My mother had a form of the disease that appeared to be slow growing but this seems to be not the norm.

Over the years, my girls entered the MS Readathon to raise money for research and as a family we've always contributed to fundraising ventures. Hopefully one day there will be a cure for this debilitating illness.


Kayly said...

An excellent post about your Mother's determination and a terrible disease.

Cheryll said...

What a truly wonderful TRUE story about your mothers courage... and yours in telling it!
I hope they DO find a cure.. sooner rather than later! :)

Susan said...

The struggles that go on in some peoples' lives are incredible. Their stories need to be told. Thank you for sharing your Mother's courageous fight against MS Maria. I read it with much compassion.