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| Cannot remember my age in this photo. Too long ago 😆 |
Last week, I celebrated my birthday, 70 years old! Where did the years go and oh!, so fast! Three score and ten, I have reached my allotted time. Anything over is a bonus and for strong people. I truly have no regrets, however there are two aspects that make me rather sad. Of course the first one is the nature of MSA and what we all have to go through. The second, is how many people many years younger than myself have been diagnosed. It must be simply devastating for not only themselves, but for their family and friends! To a large extent, at my age, one can expect the wheels to fall off and acceptance is easier although still painful and mentally challenging for all concerned. Time speeds up hugely as one advances in age and if there is one thing I have learnt is how very important it is to Live for TODAY. Yesterday has gone, never to be repeated, tomorrow is a mystery and a surprise, so no need to worry about it.
There is simply no doubt that my ability and strength to accept the inevitable is based on my very Strong Faith in God and the certain fact of knowing that all of us will die, no matter how or when.
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| I came across this! Photo from FB thanks Joe Becigneul |
Every minute someone leaves this world behind.
We are all in “the line” without knowing it.
We never know how many people are before us.
We can not move to the back of the line.
We can not step out of the line.
We can not avoid the line.
So... Now that I am officially an "old" man, around four weeks to total retirement and burdened with MSA, how must I keep myself occupied? I have actually given this long and hard thought over the past months and it has required a lot of soul searching and sorting out the fantacies and the facts.
The nature of the disease and relatively speedy downhill slope we face with MSA can of course be restricting, however, while I am able to, there are a few activities I will engage in. To help my symptoms as far as possible I will exercise (walk) every day and enjoy the beauty of creation in all its many forms, I will follow as best as I can a healthy and balanced diet, I will listen carefully to my body and if I need to rest or sleep, I will. I will also continue to read more and more about MSA and especially help and point my carer in the right direction, so that when I eventually need him, he will be better prepared.
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| Sainte Chapelle Paris - Stained Glass now Restored |
So what "extra mural" activities will I follow to keep myself from going bonkers. Besides reading and learning more about my Catholic tradition and faith and the the obvious telly documentaries and news programmes I follow, I have one passion in life that I am certainly going to concentrate on.. the creation of top notch and classy Perfumes based on the French Tradition. For years I worked for the well known French house of Guerlain and I still consider them to be the finest perfume (and cosmetic) creators of all time.
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| Limited Edition 50 Numbered Bottles - Guerlain Rêve de Lune Perfume Extract
Roughly translated"An Enchanted Moon Dream"
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Although by no means an expert, I have sufficient knowledge about the technical aspects to give this a shot. The creation of a perfume is a long and laborious task full of twists and turns at every sniff along the way. One works with minute drops of ingredients picked up by pipette and weighed to an exacting .00 of a gram. With the tremor in my hands, huge concentration is required and I am only able to blend for around an hour and then need a rest. For almost a year, I have been working on two. One is based on a cologne created in 1860 by Pierre-Francoise-Pascal Guerlain for Empress Eugénie, the wife of Napoleon III and the other is a revolutionary unisex perfume created in 1889 by Aime Guerlain. I have made more than fifty trial blends of each over the year and have almost finalised the cologne, however the perfume has some way to go. All in all, this type of activity keeps my mind focused on something other than MSA. I truly believe that we all need some sort of mental stimulation and what better than a creative hobby. Sitting round and contemplating the ramifications of MSA is simply not on my pension agenda.
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| Monks in Prayer. My two friends. |
If successful with the perfume adventure, I will produce in bulk, package and sell. Half the profits will go to a new Hermitage [Hermitage of the Blessed Sacrament] that is in the process of being set up by a priest and brother who are good friends of mine and the balance will help pay for a few odds and ends I may need.
Health wise, the past week has been reasonable. I seemed to have reached a plateu and remained in a stable position. Walking reasonably, a few OH issues and a few Dysphagia issues. The urology problems and the continuous exhaustion are always there. As we enter a full scorching South African summer, I expect to have a rough ride. In 7 days time I visit my Neurologist, Dr. W or Dr. J, there are a few developments, such as sleep issues and pain that I need to chat about.
Oh dear! I have just had a quick snooze before publishing this post and and have woken up walking like a drunken sailor and my voice has almost gone. Just shows how fickle MSA is and how symptoms can change in an instant!
[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]
Keep safe,
Neill
Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com
