Three Score and Ten, A Time of Reflection!

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.

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.

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.

Limited Edition 50 Numbered Bottles - Guerlain Rêve de Lune Perfume Extract

Roughly translated"An Enchanted Moon Dream"

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.

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

Previous Post - Next Post

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

A Painful Wake-up Call !

Bite HARD!

MSA Sleep disorders are often discussed in various social media groups. Sunday early hours, I had a wake-up call that was disturbing and painful! After a very disjointed, long and very vivid dream, which ended where I was being held from behind by a stranger who had his arms around my body and neck, I tried everything in the book to break free. Eventually I decided to bite, hard, into his hand. I suddenly woke-up finding myself biting hard into my own right hand! It was immediately both shocking and painful!

Of the various sleep disorders associated with MSA, I most certainly have one of the more commonly  experienced disorders, RBD and I quote from Wikipedia:

"Rapid eye movement sleep behavior disorder (RBD) is a sleep disorder (more specifically a parasomnia) in which people act out their dreams. It involves abnormal behavior during the sleep phase with rapid eye movement (REM) sleep. The major feature of RBD is loss of muscle atonia (i.e., the loss of paralysis) during otherwise intact REM sleep (during which paralysis is not only normal but necessary). REM sleep is the stage of sleep in which most vivid dreaming occurs. The loss of motor inhibition leads to a wide spectrum of behavioral release during sleep. This extends from simple limb twitches to more complex integrated movement. These behaviors can be violent in nature and in some cases will result in injury to either the individual or their bed partner." 

Dreams - Photograph supplied by SLEEP RESOLUTIONS

The penny had dropped! Over the past 5 to 6 years I have certainly noticed my memory of realistic, vivid dreams has increased. It is now obvious to me, RBD is why I simply do not get a good night's sleep. This has also explained why I am so tired during the day and has no doubt led to me suffering from EDS, Excessive Daytime Sleepiness. More about EDS can be found on the JAMA Neurology site. This is another "something" I will have to take up with my  neurologist when I see her at the end of this month. Reading about RBD has been enlightening, as it is one of the "symptoms" that apparently point, at an early stage, to Multiple System Atrophy! It also appears to be caused by a degeneration of the Neurons in the Basal Ganglia.

Stridor and Sleep Apnea are two other serious MSA Sleep disorders that I suspect are beginning to hit me. These I will cover in this blog at a later date as and when they develop.

[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

Previous Post - Next Post

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

Gold Star for all the MSA Carers out there!

For all the MSA Carers out there!

I recently watched the very moving video of Sophia's Search for a cure and I simply must thank the entire Dohm family for making it available to the general public and especially the worldwide MSA community, patients, carers and families. Besides Sophia's brave, personal journey, one aspect stood out for me. It was the considerable pressures imposed on the carers of MSA patients.

As patients, we all have our ups and downs. We are all at different stages with this awful disease. We all want to be as independent as we can be.  We all want to "go it alone" for as long as we can. We all know that eventually, we will need to have family, friends or professionals to help care for us. Who will give me my medication at the right time? Who will turn me over in bed when I am unable to do it myself? Who will make my "Smoothies" and feed me? Who will help me get in and out of bed? Who will help me dress? Who will be on "Bathroom" duties for me? Who will drive me to and from Doctor's appointments? Who will be able to communicate with me when I can no longer talk? Who will be around to help with the million and one things that I may need?

The wonderful and brave Sophia - R.I.P.

Watching Sophia's video and reading much about caring for MSA patients has focused my attention on the invaluable and considerable work that it takes for a person to care for any MSA patient. Not only is it the physical strength required, it is also the mental abilities and courage that it takes to be a 24/7 carer. It boils down to the fact that a "carer" also needs a "carer" or a network of their own support group!

Keep fit and Relax

Keeping well can be very difficult because of the stress and physical demands of caring, but it is so important for their own mental and bodily health as well as to help them maintain their emotional and physical strength to cope and carry on. Some of the more important aspects that a carer needs to consider are, Eating well, a healthy well balanced diet will help keep their energy levels up; Stay fit, at least a little fresh air and exercise every day; Relax! read, ring a friend, listen to some music, take some time for yourself; Training, look for local courses on for example, lifting and handling techniques; Have a break, even a short break from caring will make a massive difference to how you feel and your energy levels. 

Of course it will be most important for carers to be in touch and personally interact with one's neurologist, urologist, doctors, pharmacists, therapists and of course the local Hospice. There is just so much that a carer needs to know and do. It will be very important to understand all aspects of MSA and be prepared for and understand all eventualities. To me, one of the very best resources for them will be the MSA patients/carers support groups on facebook. Fortunately, I am blessed to be in a position of "going it alone". For how long, is another question.

Please light a candle at 8.00 pm for all MSA Sufferers and their Carers.

To all the MSA Carers out there, I say Thank You and I will most certainly be lighting a candle for you tomorrow, 3rd October, World MSA Day! 

[ View Sophia's Video Here ] [ The MSA Trust UK Carers guide can be downloaded Here ]

[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

Previous Post - Next Post

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