Brian’s blog – Sunday 24th February

Hello again. I am getting used to using my new laptop, but there is so much to learn. Thankfully Dr.Maggie is going to continue to teach me how to use it. The thing is, I seem to be getting along fine and the gremlins take over. Before we set out on this process, Dr. Maggie taught me to be patient with any new technology she was teaching me and I think I have managed to do this. I am very rarely frustrated with mistakes I may make. I try to be logical in everything I now do, not just with new learning but also with things which may crop up daily as a result of my Dementia.

I think I wrote in a previous blog that I have been accepted onto The Committee of the Scottish Dementia Working Group. I attended my fourth meeting of the committee last week and I found it very humbling being a part of this group of men and women who also have Dementia. As a group we are assisted by a few Professionals who are co-opted on to the committee. Their knowledge and experience are very important during discussions and debates. Every single person I have met in my new role has made me feel so welcome and valued. I have been encouraged to give my opinion and to raise anything I may see as relevant. At the meeting there was no doom or gloom and I can recall cheerfulness and laughter during the meeting. Most of my fellow members have had a diagnosis of Dementia much longer than me. This fact has made me so much more confident in myself.

I very strongly feel that any fear or despondency I had previously has been put aside and replaced by a new me. There are so many good things happening in my life, I can face each day with a completely different outlook. My sleeping pattern has greatly improved and when I saw my GP she actually recommended that maybe it was time to start a very long process of reducing some of the medication I have been taking for such a long period.

I am starting to prepare a presentation for an event coming up. I will be talking of my experiences with Alzheimer Scotland. This will be the first time I will be using Power Point to assist me so I am starting to put it all together quite early.The great thing is, some of the SDWG Committee will also be making a Presentation. This will make me so much more confident, knowing I will have friends around me and supporting me.

I am going to keep this blog short but I will be back next week after yet another meeting. I will explain next time after I have been to the meeting.

Thank you for taking the time to read this blog.

Brian’s video blog

Brian has made a video which can be seen on the COBALT facebook page – see link at the bottom of this page

Brian’s blog – Monday 4th February 2013

Hello again. It has been some time since I posted a blog. Despite that I am still very much interested in COBALT and Dr. Maggie is a regular visitor.

My Vascular Dementia appears to be on hold at the moment but my Dementia with Lewy Bodies has been erratic to say the least. I have spoken to my GP and to Dr.Maggie about this.

I am currently ticking all the boxes for my Dementia with Lewy Bodies. It has been explained to me the unpredictable nature of this Dementia and this is the bit I have problems fully understanding.

My wife S is probably the one who is most aware of this as she is with me 24/ 7. S. tells me of how erratic my condition is. I have been having falls, hallucinating badly, my mobility is affected during these sometimes very short incidents. Sometimes they can last for a full day and night and on some occasions for less than one hour. My memory of these occurrences is fragmented. Thankfully I have more good days than bad.

Two weeks ago I was accompanied by my wife S and Dr Maggie to Bath to take part in a Conference/Workshop over a very busy eight hours. I shared a Presentation with Dr.Maggie and thankfully it went really well. As I have said before, I have become very interested in using Power Point as an aid for presentations. With Dr. Maggie sitting right beside me my confidence and belief in my ability was high. During my delivery I talked about the changes in my life as a result of re-learning old skills and the fact I am proof positive that new skills can be learned, especially with new technology. During the Conference I was approached with invitations to speak at other Conferences. Dr.Maggie and my wife S are very protective of me in these situations. We decided as there are other things happening in my life we should be careful to go with quality rather than quantity.

I am pleased and feel very honoured to tell you that I have been invited to be a judge at the Scottish Care Accolades in the coming months. Really, I only have to think back six months and recall that I could barely use a Television Remote Control. The changes in me are incredible.

I have also been invited by Dr. Maggie to the Dissemination of the COBALT PROJECT.

These days I am been made to feel so included that my self-worth has increased greatly.

I will be keeping you informed of how things are going for me and I would like to thank you for taking the time to read this Blog.

Brian’s blog – Tuesday 2nd January 2013

Hello. It seems such a long time since I last posted a blog. Probably most of us are very busy at this time of the year.

I am delighted to tell you that there has been no further progress with my Dementia. Every thing is fine and I am physically well.

I have been working on a Presentation which I have to deliver in three weeks time. This will be my biggest piece of work in terms of content and length since I was diagnosed with Dementia.

Dr. Maggie has been teaching me how to use Power Point and I will be using it for the presentation. Together we have covered a wide range of possibilities to use and we have agreed on the items which will be appropriate on the day. I particularly like the idea of using bullet points just to keep me on track during the delivery.

My i.Phone has been a great advantage to me as I have a good deal of information in my personal journal which I can use during my presentation.

At Christmas I was delighted when my wife S gave me a Kindle. I could not wait to start using it but mindful of what Dr. Maggie has taught me, I have taken time to get to know it and read the instructions. Add to that my five years old Grandson E always looking over my shoulder and keeping me right.

I have spent many hours reading through the list of books available for purchase, and it certainly beats going into town to visit the library. Before my diagnosis I was a bit of a bookworm and suddenly I was missing something that I had really enjoyed.

Things in my everyday living were lost and I could not find a way through it. Then along came Dr. Maggie who re-introduced me to modern technology, and taught me other technology which I had not even heard of.

I understand that I will not be the quickest of students but when I learn something new I am still able to retain it in the memory I thought I had lost.

Thank you for following or just taking time to read this blog.

Brian

Researcher’s Blog – COBALT Update

Thought I’d write a quick post to update our readers on what we are up to at the minute. We are currently creating ideas for dissemination to stakeholders from all of the work we have done so far. We have ideas for events, materials and messages we want to send out but what is difficult is distilling all of the data and thinking of the best ways to get the information out there to people who can evoke change.  We are mindful that we want to represent our data and our participants in the most appropriate way possible but that we also want to try more novel approaches to dissemination rather than just sticking the academic routes that the ALT sector do not head to for information.At the same time we are also writing academic papers and organising some one-off interactive workshops buliding on what we have learnt from one-to one interviews with health and social care staff and commissioners. So as usual lots going on at COBALT!

Sarah

Brian’s blog – Thursday 13th December

Hello again. Forgive me for the lack of Blogs in recent weeks. I have had a number of bad patches with my Dementia. I have also been very busy helping my wife S in the run up to Christmas. Take this morning for example. The both of us were doing some shopping in our local supermarket. S was searching the aisles for what we required. She would place an article in the trolley (which I was pushing. As usual) and then moved on for her next selection. Meanwhile, I was quite happily placing anything and everything into the trolley also. When S turned to make sure that I was okay, she looked at the trolley-looked at me-shrugged her shoulders and started to laugh and began to replace the unwanted items. Since the day of my diagnosis, this is how she coped with it. Never questioning, never angry and never lying down to my Dementia. She deals with it face on. She has led by example and this is why I can be so positive about my Dementia.

Just recently my immediate short term memory has been poor and this is why my i.Phone has become very important. As I wrote some time ago, Dr. Maggie encouraged me to keep a daily journal on my i.Phone. She very kindly downloaded a very “clever” journal on to my phone. As well as being “clever” it is remarkably easy to use. I make use of the alert mode to help me with my medication times and to remind me of meetings and appointments. I am also able to refresh my memory about what has happened recently at the touch of a button.

I am now using modern technology in my everyday living. I can safely operate the Micro-wave, the digital TV remote control and the door exit alarm system. Things which I found so simple in the past are now a great mystery to me. That is until I met Dr. Maggie and I started the re-learning process. Friends, relatives and even some carers have said that they were sure that a diagnosis of dementia would leave me without these skills forever. Some of them have been shocked to see me use me use an i.Phone. Especially, when I know when they cannot use one.

My work with the Scottish Dementia Working Group requires me to travel out of Dundee fairly often. My phone carries all my files and information so I can travel lightly. It is also a great comfort to me as I can keep in touch with everyone I need to. Dr. Maggie taught me very early. Always keep more than one copy as a safeguard. In the past I have lost very important information and contact numbers with the touch of a button. I will end this blog now but I am sure I will be back soon to keep you up to date with my progress in the world of using modern technology while dealing with Dementia.

Pioneer groups – Liz’s blog Monday 10th December

Dear Maggie, Sorry about taking so long to send you my thoughts but I was up to Newmachar last week and it always takes me a day or two to get back to normal. While I remember, I do think a triangle might be a nice addition to the jingle. You can see you are still in my thoughts. Ihave to admit I took a while to get the hang of what we were doing and it was just as well I often had Norman as my partner so that he could keep me right especially in the business plan not to mention the strategies. That was when I realised he had a completely different kind of mind from mine. I really enjoyed your way of dealing with your unruly class. It was great when your smile brought a chink of light in the clouds when I was having a particularly dense moment. I also loved Lin’s skill at lateral thinking with her wee comments that just got us going in a slightly different direction. I am still amazed that I was part of a group which really did plan and visualise a system for which at least Geoffry and I could see immediate use. I realise I must have been pretty enthusiastic about our lighting system at home too when my husband said (out of the blue) “You could do with your lights here”, when the bulb blew in our bedroom one night. Rereading the Project notes on the cover of my folder I guess I’ll better accept that it was just a fictional company right enough even though we were almost set on going the whole way and couldn’t quite believe it wasn’t going to happen – unless Geoffrey goes it alone!!!! I look forward to our next meeting –  with the Sheffield group or whatever. Thanks so much for letting me be part of something so far removed from my normal life. I really loved it. Thank you too for the money – we did feel we should have been paying you for making it all such fun. Have a great Christmas. Love and best wishes, Liz

Since the Pioneer Groups – Researcher’s Blog

Hi all,

I can’t believe it’s been nearly two weeks since our final Pioneer Group and that it’s nearly Christmas! As we’ll be off over Christmas I thought I’d write my final blog of 2012 to let you know what we’ve been doing since the groups finished. For the past week I’ve been revisiting the video footage we took of the Sheffield group and categorising everything that we got from the sessions into outputs (i.e. written materials, ideas for dissemination) and research lessons (i.e. a good facilitator is key, which activities worked well and which could be amended next time) and am gathering all of this information so as a team we can see what we have learnt from the groups in terms of process and the messages we have learnt from older adults engaging with an item of technology. It has been illuminating to see the sessions as when we were in them they were very fast paced and so could not reflect at the time. The next step is to look at the messages we have for industry, older adults and other stakeholders and how best to get these out there. So lots to do in the New Year!

Sarah

Pioneer groups – Norman’s blog Wednesday 5th December

First a big thank you for a most enjoyable experience.

I have been thinking about our response to the new technologies and I wonder if we got that right. Technology moves in cycles and it does take, depending on the new technology, anywhere between 10 to 25 years for the innovation to roll to the whole population. As an example, the Arpanet,which became the Internet,was operational in about 1974 in a pilot site in the UK but it required
–  the development of agreed international communication standards( the ISO 7-layer model and the incorporation ofTCP/IP in that model, and
– the progressive upgrading,in the UK, of the BT Network from copper wires to fibre optics to go fast enough to become a usable network and these processes took some 25 years.

Then along comes the WWW and it can piggyback on the work already done to be,and in only about 10 year has become accepted, and then we get smartphones and tablets( over 1billion in use today, then add in Facebook, founded in 2004 but already with more than 1billion users, and you can see that an appropriate infrastructure for rapid development is in place now. Finally, tomorrows pensioners , say those in work but aged 55 or more, will be using these facilities on a daily basis so will be IT literate when they retire. They, unlike today’s  70 year olds will want to use the technology

More to follow  but must break now.
Regards,
Norman

Researcher’s Blog, Sheffield Session 10

Today was our final Pioneer Group session. The group discussed ideas for dissemination events and came up with lots of creative ideas such as a pop up shop and interviewing people at a trade show (as an exercise only) for the role of technology champion. They thought long and hard about who they want to influence and the best arenas to do this in. Their favourite idea was one of a roadshow which can travel around the country so that the group can go to the people they want to influence rather than waiting for them to attend events or come to them. We went back to week one and asked the group to think of the skills they described themselves as having and asked them to put these in context for a possible role in the dissemination events. The group were as always very enthusiastic in wanting to take part in future and they decided as a group that events must be fun and engaging. We even had one participant who said she would dress up as a tablet computer and act out this role to engage passers by. One of our participants is well connected in the community and is willing to give us speak to those she knows at the council to get us a pop up shop in the centre of the city. So lots of ideas and things to take forward for the final phase of the project. We also recieved great feedback from the group about the research process which was wonderful for us.

Sarah