Wednesday, 27 February 2013

A day to remember

I was on the footplate of this magnificent A4 Mallard locomotive this morning and it was like a childhood dream come true. I can remember as a young boy watching this train go past our home thinking I would love to be on board the cab. Yes it was in the museum and did not move, but it was lovely and I felt as if I had achieved something great today.
As a person with early onset dementia it was truly a dream come true, even though it was in a museum and not working. It would be lovely to see it running again, but I would never be allowed on the footplate of this wonderful train while its running. 

Below we have trains which used to haul iron ore from Tyne Dock up to Consett Iron works, and we used to watch these steel monsters pulling their loads up the very steep gradient each day when we were not at school
This track crossed the LNER main line where the Mallard was running so we had a choice of different trains to watch, and marvel at them wondering if any of us would ever get on the footplates in our lives

York was wonderful, a dream in many ways but a dream come true. Yes it would be nice  to see them running on main lines again, but its only when you get this illness that dreams actually mean anything at all. No one can imagine what its like to live with dementia, and I guess no one really wants to.

Friday, 22 February 2013

Bad night

Last night was grim after two very bad graphic nightmares one after the other and they frightened me to death, and ended up trying to listen to music, as I was frightened to go back to sleep again.

Whether I was over tired in the first place and that caused the problem I don't know, but I can not think of any other reason.

I know I am tense due to the tinnitus noises, but I usually get relaxed when I put some quiet music on.

However I do wonder how many people don't wake up from nights like this and it is put down to heart attack or something similar as its so bad.

I was on medication which was supposed to help but after two weeks I found that I just couldn't wake up from these horrors, and after this happened twice I stopped taking the medication. My consultant said that I could be too sensitive to the medication,

Thursday, 21 February 2013

Beamish Museum and Dementia

Beamish 1950s town used to help dementia sufferers
Michelle Ball with a reminiscence boxMichelle Ball with a reminiscence box

For people with dementia, remembering the past can provide a valuable link to the present. Alison Goulding reports. Photos by Andy Martin.

BEAMISH is famous for celebrating bygone years, but some of its most treasured work concerns people in the here and now.
For years, staff have been working with care homes and helping people with dementia enjoy some cheer and good fun.
Now, ambitious plans to build a new 1950s town at the museum have been revealed which will feed into this work.
A block of Aged Miners’ Homes within the town will provide ‘Homes for Memory’ – a dedicated centre where people living with dementia can visit with their families and friends.
Michelle Ball is outreach and access officer for Beamish and has worked there for four years.
Her work includes sessions with older visitors and specialist workshops for people with dementia.
She said: “We use our pit cottage to do the reminiscence sessions.
“For two hours we can shut the door and everything we talk about or see on outreach visits is right there in its context.
“Many older people love to chat during the reminisce sessions – memories come to the forefront. It can be more challenging and take more thought for people with dementia, but you do notice a difference as the weeks go by.”
It is thought that the addition of a 1950s town will tap into a new generation of memories.
Michelle explained: “The pit cottage is great but already some groups have said they were born in the 40s so it’s more like their nan’s house than theirs. “Having a 1950s house will be more relevant for some groups.
“There’ll also be more opportunity as it’ll be bigger and more accessible.
“Older people often find it easier to connect to the times in their life when they were making big decisions, like getting married and having children, so this will hopefully help with that.”
The museum has now launched an appeal for people of the North East to donate their unwanted 1950s treasures to make the new town into an authentic slice of history.
The 1950s town will be built over the next 10 years but for now, Michelle will continue to use the pit cottage for her sessions.
She said: “Often the thing people love the most is the open fire and the range. You can do so many things in that cottage, like having a cup of tea with the best china. We also do a lot of singing.
“We have a lovely volunteer who plays all the Tyneside songs and songs from the war. When the band hall is built we’d like to carry it on and do some tea dances in there.” One of the most important parts of Michelle’s job is to keep researching and learning about dementia, so her work is as useful as possible.
Last year she travelled to the open-air museum, Den Gamle By, in Denmark, to see its work with people who have dementia.
Michelle said: “They have a 1950s flat over a shop that they use.
“It was reassuring because they do things in a way very similar to us.
“Even though we didn’t speak the language we could see the same kind of characters and conversations in the group. When people walk in they give them a small job to do straight away, like setting the table.
“We’ve found in the pit cottage that after we’ve done some baking, some of the women like to wash up. When they’re in that non-clinical environment they remember they’re a mother of six and a good cook.
“It’s a chance to do things they haven’t done for ages.”
Working with people who have dementia is not always straightforward, but Michelle says she thrives on that.
She said: “At first I felt that if someone wasn’t saying anything they weren’t enjoying it, but I’ve since learned that even increased eye movement can show a person is more engaged.
“Sharing memories can be quite challenging for people with dementia. We don’t ask questions because that’s what they struggle with. Instead we encourage them to enjoy themselves and then sometimes memories do come to the forefront without putting any pressure on them to remember.
“So we might do some baking with a Bero book, which is fun and sociable and something they may well have done before.
“The focus is that they’re happy and having a good time.
“We’re now starting to look at more activities for men as we’ve had lots of comments that they hang back and don’t get involved as much – perhaps because a lot of the things we do in the cottage are domestic.
“We would like to have a look at using the potting sheds at the back of the cottage so everyone can leave with a sense of achievement. We thought we could do some gardening or make some bird boxes.
“No session is the same and it’s very informal.
“We encourage people to take pictures and make scrap books too so their family can see them when they visit.”
Beamish has an advisory panel of staff and managers from care homes, The Alzheimer’s Society, the NHS and other relevant groups.
Michelle said: “They’re really good to consult about the big things and the little things. Like the fact that it’s better to use mugs because they’re easier to hold. If we put together a new reminiscence box they’ll test it out for us and give us honest feedback.
Chris Colley, 53, volunteering officer for the Alzheimer’s Society in Chester-le-Street, is part of the panel.
She said: “What they’re trying to do is create a dementia-friendly community within Beamish.
“The work they do is absolutely fantastic. Alzheimer’s is a disease where you need to stimulate people’s minds and memories and Beamish fits perfectly because it’s full of memories.
“We work with the museum every year for Dementia Awareness Week and each year that event has grown and developed. This year we are hoping to be right in the heart of the museum.
“They’ve got such a lovely approach with people and they’re keen to learn from us as well. They want to know more and more about dementia and Michelle has visited our day centre with the reminiscence boxes.”
Michelle added: “We work closely with the NHS and Alzheimer’s Society for Dementia Awareness week and for the past two years we’ve had a big picnic events with local schools coming along to join in. There was games, singing and a skipping rope – it was really good fun.”
l The Great Donate has now started – if you would like to donate any 1950s homeware, take it to the Beamish Regional Resource Centre. Follow signs to Beamish Museum. At the mini roundabout in front of the main entrance turn left just before the large red metal steam hammer. Follow the road round, past Home Farm on the left and Beamish Golf Club on the left. The Regional Resource Centre is the next turning on the right.
l The museum is also looking for a set of Aged Miners’ Homes that are due to be demolished. Contact 370 4000.

Not a bad week

I have just spent the last week at home with my family, which was lovely.

It was stressful at times due to the noise from the children, and even though I am having problems with my hearing it still got bad at times.

Its wonderful to see the Grandchildren when they come up North, but it can be a case of over kill as their noise can be hard.

This is of course made much worse by the fact that the builders have only just started to rebuild the house next door, even though its been empty since the flood last June.

Still the weekend is coming and although the builders will be here for months to come, our family are heading back South and home again in the morning.

Next week I have an appointment at the doctors so they can decide what to do about my hearing as its getting worse, and the tinnitus at night is overbearing, so I hope they decide to do something now that its getting worse as its gone on long enough now.


Sunday, 10 February 2013

Dementia and photography 2

In a previous topic I talked about hobbies and photography in particular, something I really enjoy on the good days.

I have two hobbies that I really enjoy, one is looking after my tropical fish aquarium something which has given me so much satisfaction, on good and bad days as it is so relaxing, to look at without doing much.
The second is photography, a hobby that I always enjoyed, even before the diagnosis, but now there are problems remembering the settings etc.

The pleasure I get from this hobby is quite something, and yes things can and will go wrong but with digital photography life is sometimes that bit easier, as the bad pictures can be removed rather than expensive processing only to find the photographs failed to come out or are blurred.

I have tried a few things to try to remember the settings, but I always get somewhere and either can not remember them, or can not find the paper with them on. This gets distressing, but I have to fight this as I get so much out of the hobby that I can not give up,

I have a few friends who also have dementia, who are very keen photographers and they seem to have similar problems, so I am not alone.

One of these people once said that the pictures get interesting when the wrong settings are used, but at least with modern camera's we can delete all the duff pictures and keep the best.

I love taking pictures of wildlife, but as will all small things whether it is wildlife or children they never stay in the same place for very long, so patience has to be used, or you need somewhere comfortable to sit.

These days with the help of assistive technology things are slightly easier, because once I have got myself set up with the camera tripod and my remote camera switch, I can sit back and wait.

This photograph was taken early on morning down at our local park, and it was a great thrill getting close to this bird which is normally shy, but there was no one else around at the time.

Being able to catch this otter was a wonderful experience to me as it was a very cold and damp day out in a boat, but it worked and is my pride and joy. I took this when we were on holiday in Scotland

Wildlife photography is very relaxing because it means that you have to sit still and be patient, and it can very thrilling when the shot comes out right.

I could not get very close with the shots above so I had to use a zoom lens, but I did enjoy the pictures when I loaded them onto my computer.

There are many photography books, but none for those with this illness, so its a case of trial and error.

Of cause we must always remember, that any pictures of people taken can never be shown of the Internet without permission, otherwise we can risk prosecution, whether we have this illness or not.

Sunday, 3 February 2013

Not a good day


I had to go to the doctors today as I felt dizzy when I got up this morning and things got worse after that.

It seems that the original problem found in early October has returned, and they think it is either Vertigo or something called Meniere's, all to do with balance.

Last time I had it, it lasted for around a week and that was awful, so I am hoping its not that bad as I am supposed to be speaking at an event in Lincoln next week


I felt ill yesterday and did not want to do very much, as I was staggering a lot in the afternoon and ended up going to bed to try to sleep in the hope that the drunk feeling would be gone when I got up, but it carried on till I went to bed at night.

I don't know what causes this but on top of my Lewy Body Dementia it has been grim over the last few days.
Today is slightly better so I am hopeful its clearing

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