Dignity

 I am finding it difficult to know what to write about this week so, I think this could be a bit of a jumble of thoughts.

I often dream that one morning I will get out of bed easily and as smoothly as Liz does. I wouldn’t struggle but would walk down the stairs without holding on to the banister like grim death and I wouldn’t need the buttons I can't do done up done for me.  Spontaneous movement is completely out of the question - chasing Liz around the house is no longer feasible.  It is like eating, I can no longer eat without being anxious about choking and spilling.  I take easily twice as long to eat than a normal adult would.  This has changed my attitude to menus not just avoiding beefsteak and that kind of stuff but calculating how long the food I choose will take to eat.  Cutting food is increasingly difficult as MSA takes control over my micro movements.  It seems like I'm doing the motion okay but there is no power there.  This is a familiar feeling because when I fall and try to get up and make the right motion there is no power and I know I am strong, particularly my legs!  I think this is where the disease takes over and messes up the communication between the brain and the appropriate place in the body that has got to do something.          

                                                     

On top of this I have to cope with saliva control and voice volume.  My voice has changed out of all recognition and it saddens me that I can no longer have normal conversations because I am wondering whether people can hear me.  In addition the amount of saliva in my mouth makes it hard to formulate words and dribbling occurs.  The longer I speak the more croaky my voice becomes and the harder it is to get the words out.  All this erodes my dignity and the disease has the ability to destroy things I like the most, mountain walking, eating good food, having great conversation and sex.

I have a yearning this week to know more about what tricks and techniques other people have devised to cope with MSA.  Is this a sign I am now ready to join a support group, God forbid, I'm not that type of person.   I have to admit though I did go to a Parkinsons support group very early on, and came back demoralised because I saw what was in store for me and I didn't want reminding about it.  They were very kind and considerate people but not for me yet.  I am really looking for practical down to earth solutions to cope with MSA problems and confirmation that I’m on the right tracks.  One of the great mysteries for me is knowing where I am on the journey and how I am doing.