Moving Forward with MSA!

My previous seven posts have mainly been "Catch Up" blogs to the point where I am today. During the past three weeks since I started my "Online" blog, it is with absolute amazement how quickly the audience has grown. My FB page has reached almost 18,000 people and this blog, as I write has reached over 6,000 people. Thank you one and all for your support and encouraging words.

Life is a Challenge

Moving forward with MSA, I know, is going to be a challenge. Not only for me, by for those around me and especially my partner (my carer) who is already showing signs of strain. We all know what path lies ahead for us and there is no doubt there is much anxiety, worry, depression, loneliness, pain, anger, and many, many other negatives. Each of us will have our own ways of handling each of the negativities. Whatever we do it will be a battle all the way.

Awareness and Knowledge

For me, the writing of this blog has been essential, not only for creating awareness of MSA but also it has forced me to read far and wide to find out all I can about the disease. It has been a calming and cathartic exercise and helped immeasurably in helping my coping mechanism. I think the most important thing I have discovered is the way we are able to communicate with other MSA sufferers, share ideas, learn from each other, moan and groan with each other and above all, support each other. Some of the groups that I now belong to are open and others are closed and strictly for sufferers and their carers. The amount of information I have gleaned from these group is considerable and being such a rare disease, it is encouraging to know that there are others that are going through exactly what I am going through. It is important to keep top of mind that not only is the disease rare, only .005% of the worlds population, it also makes each of us a rare and special person! At the end of this blog I give a list of all the links to the groups I belong to.

Nobody Knows 😪

My biggest gripe is that virtually nobody knows about MSA. I have briefly touched on this in previous posts, however it has now become a big thing for me! Many MSA'ers have the same gripe. Friends, Doctors, Nurses, Even Family, you name it, simply do not know about the disease let alone understand it. Yes.. we do look most of the time like a normal human being except when we are having a bad day walking or tremors are noticeable. The problem of course is our insides are breaking down and this is not visible to those around us. No one can "see" neuron atrophy.. so no one knows! I now carry with me at all times a "Book Mark" with a link to my Blog and a message. It is passed out to many people and I talk about the disease all the time. TALKING about it helps!

Don't Worry!

Each new day is an opportunity! From now on, moving forward is going to be a simple as I can possibly make it. Daily, I am going to walk as much as I possibly can. Daily, I am going to listen to my body and take a midday nap or a rest for an hour or two. Daily, I am going to make sure I tell at least one person about MSA. Daily, I am going to read all the latest posts in the MSA groups, interact and listen to what other MSA'ers are saying. Daily, I am going to take a long hard look at the grass, the flowers, the birds, the sky, the clouds, the animals, the people around me. Daily, I am going to make notes on how I feel, what is good and what is bad. Daily, I will read a little more on palliative care for MSA'ers. Daily, I will read more on how to care for my body as it breaks down, I need to be prepared. Daily, I am going to move forward, one step at a time, never looking back. This appears to be rather a full day; it is and it will keep my mind off matters! I still have a life ahead that I need to enjoy for as long as possible.

My Recommended Groups and Links

MSA Related Treatment & News Discussion (Private/Closed)

Multiple System Atrophy (MSA) Buddies (Private/Closed)

MSA A Patient's Journey

Multiple System Atrophy (MSA)

Defeat MSA
MSA Shoe

Multiple System Atrophy Research News

MSA Coalition Public Discussion Group on Multiple System Atrophy

Multiple System Atrophy (MSA) Angels, Memories & Spirituality

Rare Connect.

Multiple System Atrophy Trust - Non UK

The MSA Coalition

MSA - Multi System Atrophy - Port Elizabeth & Eastern Cape
MSA in South Africa with Sonja

Rare Diseases South Africa - Patient Support Group

Parkinson + Syndrome MSA

• Progress in MSA Research

[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]

(Next... The Week that Was)

Keep Safe,

Neill

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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