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I am not the main carer in this case but hope I can give you some insight into the progression of my Dad illness up until the time of his death Oct., 18, 1997.
Dad was first diagnosed 6 years ago, at the age of 64. He had been experiencing strange sensations in his shoulder for a short period of time but was not too concerned about these. His job was a Postman, so his shoulders had received a lot of punishment over the past years. He was retiring in nine weeks so this he thought would help. His GP thought that the cause was probably a frozen shoulder. Prior to this Dad had one or two falls that nobody could explain and to this day we do not know if these were connected to CBGD or not.
One day whilst at work he picked up a letter he was sorting out into his mail bag and was unable to let go of it. His thumb and forefinger would not part.
When he went back to his GP concerning this he was sent to see the Consultant Neurologist at the local hospital. Certain tests were carried out to ascertain dexterity and also a mini mental score test was carried out. An appointment was made at the university hospital in the neighboring town for further tests. As Nurses, my husband and I were starting to suspect Parkinsons Disease but never expressed these fears to Mum or Dad. The Consultant at the Queens Medical Centre University Hospital in Nottingham diagnosed CBGD saying that it was a new illness that was part of the Parkinsons family that very little was known about. It was known that the illness would progress and that there was at this time no cure for it.
The numbers in the UK were very low - Dad was the only one in our town with it and there were only 15 cases in the whole of the Midlands. Dad was asked to donate his brain on his death and this he agreed to do.
After that point we were basically left to get on with things and discover the illness as it gradually took more and more of Dads dignity, it never could attack his brilliant sense of humor though, this stayed with him right up to his death and Im sure this is what helped him quickly become one of the favourites in the nursing home where he spent his last four weeks.
After the incident of Dads thumb and forefinger he eventually lost use in that arm. Before this though he went through a stage where his arm and particularly his hand would not obey him. He would shake your hand or pick up his glass of beer and not be able to let go. His grip was like iron and Im surprised that the glass never shattered under the pressure. Never one to give in, it took him a long time to give in and use his left hand and when he did it was very clear that this hand had lost some of its movements.
Whilst the GP was very good and supportive to Mum and Dad he admitted that there was nothing that he knew about the illness so was unable to offer any advice.
Dad was seen periodically by the consultant (or rather his staff) at the local hospital but I always thought that this was more for their benefit rather than ours. Each new problem put to them was answered by the restatement that Dad was never going to get better and nothing could be done. You only need to be told this once, maybe twice to help it sink in, but every hospital visit, it started to get Mum down. They prescribed Selegiline three time daily to see if these would help. They never seemed to but Dad carried on taking them; I think it was more because at least it felt as if something was being done. Later on in the illness they also prescribed Baclofen but this was stopped when no improvement was noticed.
Dads legs were the next to be affected. He began to drag his right leg and his walking became unsteady. He began to have numerous falls. When walking he would be slow to start but once started, impossible to keep up with. The hospitals way of helping with his unsteadiness was to give him a walking stick. Bearing in mind the fact that he had already lost control of his arms. The stick was carried more like a magic wand going every where but where intended so was soon put in the cupboard.
As the illness progressed both legs became affected. Dad became increasingly rigid and seemed unable to command his body to do as it was told. When Mum tried to lift him, instead of coming forward, his body would lean backwards, increasing the strain and frustration on both of them. But still they kept laughing.
Dads speech had started to go at this point. Occasionally he would use completely the wrong word. Sometimes he was unable to say the word at all. His speech deteriorated to the level where only occasional words could be understood and our lives became a constant game of charades, we asking questions and he answering either yes or no until we got there. Often, though the moment had passed before we understood what Dad was showing or telling us. It was this part of the illness that I found the cruelest. He tried so hard to tell us things and struggled until it was understood. Along with the loss of speech came the loss of his ability to swallow. He suffered a bout of aspiration pneumonia and was advised to only drink liquids that had been thickened. At one point he could only manage teaspoons full of this thick gunk that resembled none of his favorite drinks. Slowly he improved and was able to drink his thick liquids from a beaker.
Dads package of care consisted of one day a week at a day hospital and two weeks every eight weeks in a hospital ward to give Mum a break. Whilst at home a care aid would visit every morning to help wash and dress him. They werent allowed to lift him in case they injured their backs, so Mum continued to do most of the lifting. Late on in the illness a nurse would visit to bathe Dad or to help him have his bowels open as this had become a problem.
On June 12th , 1997 Dad went into hospital for his regular respite care. It was here that he suffered the aspirational pneumonia. Whiles his ability to tolerate drinks from a beaker improved his general strength did not.. His stiffness became more pronounced making it impossible for Mum to be able to care for him at home.
Once well enough to leave hospital we found him a nursing home near to where Mum and I live. This was a hard decision to make. Mum said it felt as if she was signing him over. Once in the home Dads charm soon won the carers affection and during the month he stayed there he received excellent loving care. Mum visited daily and I as often as I could.
Dad took ill during one night. The GP was called who diagnosed bronchial pneumonia and prescribed more anti-biotics. Dad had never really been free of them since his illness in June.
This was his last illness. His breathing just deteriorated and the cause of death was put as pneumonia. Whilst it may not seem important what caused the death, I regret that the GP did not put CBGD on the death certificate as I think this would help towards research in the future as regards the amount of deaths caused by the disease. But, at the time, you dont think of these things.
I hope that this is of use to you. It has helped me just sitting down writing it all down. As an ex-carer (although I must say Mum did most of the care). The CBGD family has been helpful to me and I hope to remain in touch in the future.