Thursday, January 24, 2013

FIGHTING BACK HARDER, WITH HELP

I'm looking forward to my signed photograph from Olympic champion gymnast, Olga Korbut, who has joined our ranks in the fight against MSA


The year started with me resolute to fight back harder. Towards the end of last year my exercise and walking programs petered out, mainly because I had been robbed of confidence by two falls.  The early morning walk with hubby and the walker is no longer possible as the risk of falling had become too big.  All my energy and effort will now be concentrated on other exercises to maintain and regain muscle strength.

I made an appointment with the therapist to come and see me at home as getting to her (or anywhere else) is difficult now.  After our last appointment I also felt that most of the exercises she had done with me in her rooms were either too risky or impossible to do without her assistance.  Friday morning was spent with her reassessing me and adapting the exercises so I can do them safely here at home.  Afterwards I was shaking like a bowl of jelly (Jell-O in USA) and had to lie down for a siesta.  My muscles are weak, fatigue easily and it’s going to take considerable effort and discipline from me to regain some strength.  I have also slowed down to a snail’s pace and I'm finding it difficult to keep up with correspondence and facebook activities etcetera.  To make time for this essential exercise program I’ll sadly have to cut back on time spent on the internet.

Yesterday I read most of Imre George Mailath’s well written and interesting notes as a carer and observer of his wife Jenny.  There are many similarities to my journey, and his following words made me realise that I have to live every day as a gift of God and make use of every opportunity while I can: “The one thing that occurred to me fairly early during those months was that from information I gained from the Web and in the main from support organisations of various neurological conditions was that there is a period when the condition deteriorates fairly slowly and therefore any period that can be regarded as providing a reasonable quality of life must be regarded as paramount and every effort on the part of the carer or carers must be concentrated to ensure that this quality of life endures for as long a time as possible.” 

A facebook post inspired me to keep track of all the good happenings in my life this year.  The idea is to review all of these on Old Year’s eve and give thanks.  Here are some recent good happenings;



A friendly post office official recently phoned looking for me.  He had a Christmas card with no street address and no return address for me and personally delivered it to our door within 30 minutes.  The card came from Anne Burke and her sister Sheila in Ireland.  With the card was a note explaining that they heard about me and MSA from Emilene whom they met during their pilgrimage on the Camino in Spain in 2012.  It was encouraging to hear that they follow my blog, and I felt strengthened by their prayers.  I am still amazed by the contacts made by all who walked the Camino last year and this surprise certainly perked up my week.

Unfortunately the good impression our postal services made on me was short lived when Lily Shih of CURE M.S.A. let me know that the parcel with bracelets and t-shirts she sent to me has been returned to her with a notice that it was unclaimed.  I have been looking out for this parcel for months and never received any notice to claim it.

My Kindle e-reader, a Christmas gift from hubby and son, has arrived.  My boy had done most of what was necessary to start up the Kindle in London before sending it to the couriers.  With his telephonic instructions we connected it to our wireless internet.  It proved easy to handle and I bought and downloaded my first book within minutes.  There are 42 000 free books available at Amazon, so I downloaded a couple of those just for fun.  Reading is an absolute pleasure now that I can set the font and the light to see clearly.

The MSA community now have Olga Korbut helping to create awareness and raising funds. This Olympic Champion gymnast lost her friend and team mate Nikolai Andrianov to MSA in 2011.  During the month of January, all proceeds of her store will be donated to MSA.  I was inspired by the example set by MSA friend, Paul Moreau, to order a signed photograph, featured at the top here, from her website. Supporting her enables her to support us.  Thank you Olga Korbut for joining our ranks and helping us with our fight against this disease!


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