I have joined this forum as sadly my Brother Andrew has been diagnosed with a very rare form of Familial Early Onset Dementia (Preseniline-1 Gene defect). He has just turned 44 and has been showing symptoms of dementia for at least 4 years. After the usual barrage of tests the medical experts diagnosed Pick's Disease (last Summer) but then just before last Christmas they revised this to a more accurate diagnosis of Familial EOD, specifically a "Spelling Mistake" in Andrew's Preseniline-1 Gene.
Fortunately he has no children to pass the defective Gene on to, however his wife and the wider family are struggling to come to terms with loosing 'Andrew' as we knew him. The really sad part is that he spent all his working life as a Geneticist and now he has a genetic illness. He has declined rapidly from being the most intelligent member of our family 4 years ago, through pushing Trollies in Tesco's Car Park (the only job he could hold down) to being medically retired las t summer and now struggling with many day to day activities. As yet he is not suffering from incontinence and is still able to walk (albeit with a very slow gait and using a stick) but personal hygene has started to become an issue.
For me the real frustration is that I live in Berkshire and Andrew is in Cambridgeshire. I want to be there for him on a daily basis but sadly I cannot.
His local Soc Services have been very good, although I guess this is a Post Code Lottery. He is involved in diverse activities most days of the week, from Art/Pottery through music/movement and even Newspaper discussions.
He has been told his condition is life limiting and my Mother, Sister (and family), and I are all attempting to provide him with the best quality of life in his remaining time with us. Any ideas on how we can make his life as much fun as possible would be appreciated.
The worrying part for my sister and I is that, as Andrew has a Genetic condition, there is a 50/50 chance that we could suffer the same fate. Doubly painful in watching our Brother suffer knowing that could be us one day. I keep asking myself why us, but I guess everyone on this Forum probably feels the same.
Luckily (sic!) Andrew had Critical Illness Cover that has been able to pay off his Mortgage. One less burden on him and his wife.
I hope I have not rambled on too much but needed to put everything down.
Fortunately he has no children to pass the defective Gene on to, however his wife and the wider family are struggling to come to terms with loosing 'Andrew' as we knew him. The really sad part is that he spent all his working life as a Geneticist and now he has a genetic illness. He has declined rapidly from being the most intelligent member of our family 4 years ago, through pushing Trollies in Tesco's Car Park (the only job he could hold down) to being medically retired las t summer and now struggling with many day to day activities. As yet he is not suffering from incontinence and is still able to walk (albeit with a very slow gait and using a stick) but personal hygene has started to become an issue.
For me the real frustration is that I live in Berkshire and Andrew is in Cambridgeshire. I want to be there for him on a daily basis but sadly I cannot.
His local Soc Services have been very good, although I guess this is a Post Code Lottery. He is involved in diverse activities most days of the week, from Art/Pottery through music/movement and even Newspaper discussions.
He has been told his condition is life limiting and my Mother, Sister (and family), and I are all attempting to provide him with the best quality of life in his remaining time with us. Any ideas on how we can make his life as much fun as possible would be appreciated.
The worrying part for my sister and I is that, as Andrew has a Genetic condition, there is a 50/50 chance that we could suffer the same fate. Doubly painful in watching our Brother suffer knowing that could be us one day. I keep asking myself why us, but I guess everyone on this Forum probably feels the same.
Luckily (sic!) Andrew had Critical Illness Cover that has been able to pay off his Mortgage. One less burden on him and his wife.
I hope I have not rambled on too much but needed to put everything down.