Hi everybody its Prof here; I don't write very often on the forum because I have found a way of taking control of my PD, and the way that I take control is I write short stories. and poetry. Trying to think of a different plot for each story keeps my brain working; it sets the cogs of imagination in motion on a daily basis and helps to prevent me from thinking about the reason that I started writing the story in the first place.
I haven't been able to write with a pen or pencil for two years, but I can use a typewriter and a word processor, which keeps my fingers active and prevents them from seizing up which is what happens if I am doing nothing. My biggest fear is getting dementia like my father did in the final years of his life; he became violent and swore at people in an extremely aggressive fashion. At the end of his life he wasn't the man I remembered he became a complete stranger to the entire family and it was a very sad experience for all of us.
I started writing short stories after I had written my autobigraphy, as a lecturer of English Literature I find it very therapuetic being able to continue with something that I did for many years, butit ios something that we are ll capable of doing because in every person there is a personal story.
How are you? Really sorry to hear about your father, dementia is very hard on families. I can understand having that fear, especially if you've lived through it with someone.
It sounds like your writing is keeping you busy, so many members love to write, you're not alone there!
Is there anything you'd like to see change on the forum that would help you post more regularly?
Nice to hear from you; my father actually passed away ten days ago, but life goes on. Regarding the forum would it be possible to have a column for short stories and poems? I'm sure that many people would send their work in for publishing. Who knows we may even get an Alistair Maclean, Charles Dickens or Agatha Christie, from our group of highly educated zombies (Joke) sorry if it offends anybody.
Hi Brian, Another prof here , emeritus thankfully. At the risk of reviving the CP Snow divide I'll contribute my pennyworth, from a cell biologist's perspective. I share your concern about a possible PD/ Alz link, having also had a father with AD. Also I can no longer write legibly. That was my first PD symptom about 3 years before the hand termor started. Micrographia. So its keyboard only now. Will writing help stave off PD or AZ? Probably not judging by what I've read about 'cognition'. There does not appear to be a 'use it or lose it' component. Two therapies that might help are exercise, enough to get breathless ( 'aerobic') and Vitamin D. The science is not solid yet but a chronic ( decads) lack of vitD3, or subtle polymorphism is the D3 pathways eg its receptor, might underlie both PD and Alz. I am writing a D3 talk for our local U3A whcih I'll post on my blog at the end of the month. Peter
Hi Brian and Peter. Your subject here is one of interest to me. I was one of the contributors to Parkinson.s UK creative writing toolkit. The aim was to encourage engagement and improve the quality of life. I am a member of a couple of Parkinson's closed Facebook groups as well as using the creative corner here. Writing blogs and poetry is used to communicate and share. It provides a mechanism for engagement -reading other peoples work leads to a feeling of sharing and understanding. It allows the processing of difficult Parkinson's issues. None of this is necessarily holding off dementia but bear with me.
The cognitive tests usually show a correlation with how far the person went in education and this is a generalisation I have asked about this and the response I had was that achievement was in line with the ability to use mental strategies and problem solving. The thought being that those who learned strategies in earlier life have more tools to use their cognitive abilities.
Going a step farther have those who have cognitive issues the ability to relearn. The answer is maybe. If someone has forgotten the alphabet they may be able to relearn it by singing it. It is possible writing helps by increasing neural pathways giving more links and providing a stronger base for retaining word knowledge.
Another cognitive factor is tiredness and how "off" they are. Cognitive achievements are higher when we are at our best. This is important because if someone has cognitive difficulties if they can align tasks with feeling at their best they will achieve more. This could be doubly important because as soon as we believe something is beyond us it is.. So retaining confidence and self belief is also important.
I am not claiming we can hold off dementia but I do think we can perhaps maximise the effectiveness of our cognitive abilities. Creative writing has much to offer if we choose to use it but nothing is better than a well balanced active life.
Hi Ian & Peter,
I have chosen to attempt both exercise and creative writing, but I pace myself so that I can do a bit of both every day. Bearing in mind that there are many people with PD, who aren’t able to do much exercise due to previous health conditions, I would definitely encourage them to try writing
Using your mind and imagination is a good way to temporarily forget the problems that PD gives us.
Hi. My father also had PD and dementia. He died 13 years ago. Inevitably, having PD I worry about getting dementia too. My neurologist has done his best to reassure me, but not very successfully, because I knew I had PD two years before I was diagnosed, and by the time I was diagnosed I’d had several doctors and a neurologist (but note not physiotherapists) claim I didn’t have the disease.
I do think I see signs in myself. I forget names of people and places. I’ve always had a tendency to do this, but it has become much more pronounced, in the sense that I forget the name of someone I know very well. For example, we have a good view from our window which includes a local historic manor house. A visitor yesterday asked me the name of the house, and I could not remember it.
I do exercise and creative writing, also puzzles. I’m part of a big study on dementia run by UCH. I wish I had access to the test results.
I have just completed writing my autobiography. My advice to anybody who is concerned about developing Dementia is try writing your autobiography, and make it as detailed as you can. You will be amazed at how much you can remember.
I am sorry to read that your father died with dementia and I can understand your fears for your own health problems. However, do you not think that you are placing yourself under added stress by worrying about this, if your neurologist cannot persuade you that you will not get Dementia then who can? Further more your neurologist doesn’t have a crystal ball how can he or she possibly be able to tell you what the future holds, only God knows the answer to your question my friend.
Regarding creative writing Peter, that is good! It shows that you are able to use your imagination, which many people are unable to do and I am referring to people who are not plagued with illnesses that affecr their brain or nervous system.
Please try to make a list of everything, and I mean every event and happening that you have experienced in your life ! This will take you some time to achieve, and you will be surpised at how many things you wil remember from your past, secondly you will be even more surprised at how many things come back to you after you have made your first list, these you must add to the first list.
Now try to put them in the order they occurred in your life if you can remember the year or better the month and the year do so Gradually you will see your life story start to paint a picture that you will remember, and you will start to remember things that you forgot to put on your list.
I wish you the best of luck PeterC
Prof.
