So, what does HD mean for us?

HD can vary in different people.  Whilst most people will experience similar symptoms it seems to me that the particular areas that cause problems can be quite varied.  The joy of HD is that it is progressive, meaning that symptoms tend to remain stable for a while and then 'wham' a new symptom or issue tends to arrive.  Keeps us on our toes.

So, this is where we are pretty much at for now:

Motor Impairment

This effects movement.  Walking is affected.  Balance is poor.  Gait is poor.  Co-ordination is affected making Mr W very clumsy.  Mr W has been asked if he has been drinking, this is the effect HD has on the body.

Spacial Awareness

Mr W is prone to walking into things, including children on occasion.

Speech, swallowing , eating etc.

What I didn't know until recently is that eating and speaking is actually a very complicated process involving several different functions.  Strange to think that we don't really give it any thought.  It is no surprise then that this is affected so early on in the disease.  Speech can appear slurred and with lack of clarity.  Choking becomes a common occurrence.

Lack of oomph!

This was I would say one of the first things I started to notice in Mr W prior to diagnosis.  Ability to initiate tasks becomes affected ... particularly those that Mr W is not keen on (or perhaps he is just smarter than me)...I have gradually over a five year period become responsible for most household chores. ( Except putting the bin out!  and I'm not taking that one on easily)

This also affects social interaction as ability to initiate conversation can be affected.

Sadly this was the main reason Mr W had to give up work and can be quite hard for both of us to deal with.  People can understand being physically unable to do this...mentally unable is harder to understand.

Sleeping

The changes in the brain interfere with normal sleep patterns.  This brings with it a continual challenge of finding drugs or supplements to help with sleep.

Lack of energy

HD interferes with energy production.  This, added to everyday tasks becoming harder for the brain to undertake, means that Mr W spends a lot of time falling asleep on the sofa! Imagine you had only one arm.  Perhaps you would use the other one a great deal more.  This arm would therefore become very tired easier.  With HD the other brain cells have to compensate for the ones that have been affected or impaired.  The rest of the brain has to work harder and can therefore tire more easily.

Cognition

With HD cognitive skills decline.  For us it is very much a slowing down of thinking.  Before diagnosis I was often guilty of shouting " have you heard me?  are you going to answer?"  In fact, on a bad day I do still do this.  (Understanding what is going on and being tolerant are not always the same thing....and I am no angel!) Mr W likes to say "pardon" a lot.  This is not a sign of poor hearing but of him taking time to process what I have said.

Chorea

This is one of the worst aspects of the disease as far as I am concerned.  Chorea 'dance' makes it sound like something fun....but involuntary movements are far from fun.  We have gone from mild finger tapping to full body jerks and it is a constant reminder of the illness.  At its worst people with HD become unable to remain seated on a chair without falling off.  There is nothing pleasant about Chorea.  There are however some medications which can be of help.

Poor temperature regulation

You would think not a big issue but having a husband who likes to walk round in his boxers and constantly opens windows "because he is too hot" drives me mad! He clearly has not been affected by the recent cold weather!