Wednesday, 17 January 2018

Falls and Freezing

December 2017

Over the last few years I have had many minor accidents and many near misses, due to brain problems.

I know that I am not alone with this problem because many others with neurological llnesses have the same, or very similar  problems

However I do wonder how much is known about these problems, by the professionals like physiotherapists and occupational therapists.

While they are true professionals,  I guess their knowledge may be limited when it comes to certain neurological illnesses.

After seeing people at the movement clinic, it annoyed me because they always say the same things without thinking about it. While some people are helpful, I do wonder about others.

I sometimes go light headed when standing up after being sat down for a while. Their answer as usual, is to take it slowly, stand up slowly and then gradually turn or move off.

But if you wake up from a snooze and need to go to the bathroom, the last thing in your mind is to rise slowly. It's the same when someone comes to the door or the phone rings, you just want to get there without thinking about anything else.

My memory simply does not cope with remembering to do things slowly, because I either don't remember to do it, or I am in a hurry.

I guess it's the same thing when I am writing on my computer, because my brain is trying to go much faster than my fingers, so I miss words out of a sentence,  without even noticing until I check it much later

One problem I have at home, is that when I am washing up in the kitchen,  I some times turn to walk away, which is quite normal, if that is your brain is normal.

But in my case I have this problem where my body moves, but my feet stay firmly fixed to the spot, "Freezing"  so it's a case of grabbing something or facing the floor or anything else which gets in the way.

When I was working I heard about an alcoholic drink which used to give people the idea, that they were sober until they tried to move. Needless to say their bodies moved,  but their feet stayed firmly welded to the floor.
I had no idea what this drink was, and had no intention of trying it, because I can get the same effect without having a drink these days.

I gather this "Freezing" thing is part of Parkinson's disease, which may be the case, but it's embarrassing when it happens as well as distressing

While I can understand that these physotherapists and other experts are trying to be helpful, I do wonder if they really understand what we are going through.

Trying to live a normal life, doing things around the house etc, is my way of being helpful while remaining active. 

However there comes a time when I just don't want to do anything because of musjudging things.

Even washing up can be a nightmare at times, because I often misjudged distances between the basin taps and the items in my hands, so things get damaged or broken.

It's not even a ploy to get out of washing up, because I like to keep active in any way I can, but there  are days when I will not wash a drinking glass up just in case I break it, and I have done this on many occasions

I tried to explain recently that I some times misjudged things like the  curb at the edge of footpaths. But this is all coupled to the fact that I cannot judge things like speeds or distances anymore, and this can lead to me being dragged back by my wife who is more switched on. 

Furniture in our house has been set out so that I can grab something if I am going to fall, or if I get up too fast, but the brain does not always recognise these things at times.

I also have a habit of missing a door opening at times and bump into the door frame or the door, ending up being bruised. Here again I find this to be a nightmare,  if I need to get up during the night.

I know where I am going, but I think my brain sends me in a straight line, but forgets about the obstructions which are in the way.

It's embarrassing enough when it happens at home, but when I am else where  it feels much worse because people tend him think I am either on something or I am drunk.

I can understand how the police etc, misunderstand our actions, and think we may have been drinking,  but it does not really help us.

Sunday, 14 January 2018

Dementia and Hope

Taken from an earlier Blog

When I was undergoing my first diagnosis in Oxford, and was still working, I never let my religious beliefs go.

I suppose I was hoping that my religion would keep me going, and would save me from whatever was coming.

At this time most, clergy prayed for those who were sick, or dying, and it was generally accepted, because these people were usually seriously ill, either at home in bed or in hospital. 

However, I remember reading notes in my old Office diary the other day, that I was at an Evening Service in Oxford and was staggered to hear the priest praying for me.  My wife said that I looked at her in disbelief, and perhaps shock, wondering why I was being prayed for, when I was in church.

I now understand that it is quite common, to pray for everyone who is ill these days, but I confess this did not help me at the time, and left me feeling very confused 

Originally, I had started going to this evening service because it was very quiet compared to the normal Sunday service, and easier to cope with, however by this stage I had forgotten how to say the Lord’s Prayer, and it took a lot of demanding work to bring it all back.

We eventually moved back to my family home in the North East, and we decided to return to my old church where we had been married and where I had been in the choir for over ten years. 

I then realised that the words I had learnt again, were totally different to those being said at the service. After going to a second service where they sang the Lord’s Prayer, I decided enough was enough, simply because I don't cope with constant changes.

By this stage, I simply could not read words and sing at the same time. 

I then found that the Church leaders, from Bishops to Clergy,  were not interested in people with memory problems, because we were told that if I was not happy I should attend the 8 am service on a Sunday morning.

At this point I had been struggling to sleep at night and had very graphic nightmares, which meant that I was just going to sleep at around 4-5am each day, but this was totally ignored by the church when it was mentioned.

Having spoken to a few elderly clergymen over the last few years, they are lost for words when I discuss this, but it sounds as if this is the way modern churches are going


While I struggle to cope with my religious beliefs these days, I can understand why people turn to turn back to religion, to keep them going, and I guess to help them understand meaning of life.

I guess it also gives them” Hope", that small word with a big meaning.

Hope can bring meaning into a person's life, and help them to face challenging times without despair.

Hope is future orientated and experiencing, and "Hope", provides the strength to cope with painful and stressful events, such as receiving a diagnosis of Dementia

Hope gives a person the will power to think a cure may come along, or medication may improve or stop their illness in its tracks.

Finding "Hope" is a means of coping with this illness, and what is happening in our lives, and Professionals need to be aware, that even when "Hope" is unrealistic people must find their own meaning to life

Although I am struggling to cope with my faith these days, I still have "Hope"

I know that even though I lose the ability to do some things, I "HOPE" to fight on, enjoying my family for a bit longer, and enjoying the hobbies I can still do without assistance.

I know that I will never be able to enjoy my faith in the same way as I used to do, because of the constant changes to services and prayers these days, but as one clergyman said recently, that’s the way things are moving in the Church of England and there is nothing anyone can do about it.

To me it feels as if the religious leaders in this country have turned their backs on those who are ill, and struggling with their faith. 

Many clergy say that it's a waste of time performing services in front of those who have memory problems or dementia, because they simply cannot take an active part. If only they took the time to think carefully.

I personally feel that this is the way clergy are trained these days, its not the best way, but with modern Bishops and modern ideas, things like people with dementia etc  are largely forgotten as a waste of effort. In other words the days of pastoral care and visits from clergy are long gone and confined to the history books 

Many people grew up with familiar types of service and forms of prayer, and do not cope with constant changes to services etc.  

Nor do they want to hear long winded sermons, which have no bearing on modern day life. As one elderly vicar once told me, it takes a lot of care and thought to do a sermon which means something these days, otherwise people simply give up all hope and drift off

So, we must all find our own way, and Hope we can carry on as best we can. 

Yes we lose so many hobby's and things we enjoy in life, but we have to adjust and move on, and I guess if that means losing touch with our religion, then so be it. Its not easy but we need to do want is best for us, and forget everything else.





Falls and Freezing

December 2017 Over the last few years I have had many minor accidents and many near misses, due to brain problems. I know that I a...