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

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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