CONSTANT CHANGE IS HERE TO STAY

Karin standing, and I, photographed on World MSA day 

With my coping skills permanently challenged by MSA, I am trying to gracefully accept that CONSTANT CHANGE IS HERE TO STAY, but I cannot help but wonder apprehensively how much change we are going to have to shoulder in the coming year.

So far my speech, thankfully, remains unaffected, and, except for having to peel my fruit, I have no problem with swallowing.

Low blood pressure is a problem in the hot weather, but I am trying to manage that by keeping well hydrated, eating a salty snack when necessary, and l am keeping cool with the help of two newly installed air conditioners.  Despite all these precautionary actions there was big drama during the hairdresser’s visit last week.  As she was doing the highlights I felt all my warning lights coming on. First I started to sweat, and I desperately drank more water.  When everything started greying out, I desperately ate more chips, but when sounds started fading out I realised that I had to get into a horizontal position very quickly!  The hairdresser, concerned but unfazed by this, completed the task with me lying down.  Gold medal to her! After consulting with the neurologist I am now taking a smaller dose of medication at shorter intervals.  Hopefully this will reduce the impact of the medication on my blood pressure.

In terms of movement things have deteriorated since last year, and after a couple of falls with the walker I am now permanently in the wheelchair.  For the benefit of my bones and circulation, and with Johnny firmly gripping my waist, I try to walk up and down the passage a couple of times with the walker every morning.  Sometimes I freeze and have to abandon the attempt, but sometimes I still manage a couple of steps.

Sitting at the pc is limited because of pain in my back and hip, a lot of it caused by my tendency to lean towards the right side (Pisa syndrome). This is very frustrating for me because it limits the time that I have for blogging and communicating with others. 

My hands are now also affected, resulting in difficulties with the handling of cutlery and eating.  I am considering designing a big bib with the words; EAT, PRAY, LOVE, and to just swallow my pride and wear it with grace! Typing is becoming more difficult, but I have a neighbour who has written two books typing with two fingers and I still have a lot more fingers in action!

Drinking cappuccino’s in the coffee shops is becoming tricky and criteria for choosing restaurants now include that their cups must have nice big handles for a proper grip.  Hubby and friends now have to take the first sip so that the cup is not so full and then it is still a matter of grip, aim, breathe out and relax before attempting to drink.  Despite all this, I love going to coffee shops and I’m not giving it up soon!

But there are still a lot of things I can do and one of my goals this year is to find other MSA patients in South Africa to join our facebook group so we can interact with and support each other, and share our experiences and solutions for problems.  Our little group is very enthusiastic and has shared some great ideas and promised their support.  If anybody knows of anyone in South Africa with MSA, PLEASE CONTACT US by leaving a comment on this blog, or through our facebook page.

Karin and I have had the unexpected honour to be nominated to act as Ambassadors for MSA (scroll down to no 13).  We are not quite sure why, and are somewhat uncertain what is expected of us, but as you will see, we were nominated for what we have done so far, so I reckon if we just keep doing more of that, it should be okay!  We will most certainly try our best to create more awareness for the disease, especially before and during MARCH, which is MSA AWARENESS MONTH.

Now all I have to do is to get this ever more unwilling body to give 

its co-operation!

photo by Laurette