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Brian’s blog – Sunday 11th May 2013

Hello all. Here I am again after another extended break. Dr Maggie still visits me and on her latest visit the task was for me to relearn how to use a memory stick. Some years ago, before I was diagnosed with Dementia, I would use a memory stick probably every day and it was invaluable to me in my employment. Alas all those memories have completely gone and it only with the patience of Dr Maggie that I have managed to get back to the stage I am at now. Originally when I first met Dr Maggie she had to go back to the very beginning with me and start with very easy to understand tasks on my computer. She did not mind that it usually took very repetitive instructions over a period of weeks and months before I finally got it.
Anyone who has read my previous Blogs will know how difficult things were for me after I was diagnosed. That was three years ago and I am still in the early stage of my Dementia. I spoke with my Consultant last week and he was delighted to hear how successful Dr Maggie has been in such a short time. To be honest, he looked astonished when I demonstrated the use of my I.Phone.

Before I was asked to take part in COBALT I had very little interest in re-learning or in fact learning something new. I thought those days had passed me by. It also took me into a completely new place. I was transferring my new technology skills into writing presentations and going on to actually deliver them to some well attended Conferences.

This was down to Dr Maggie and the confidence she had in me.

I am always delighted to discuss COBALT with anyone who will listen. I am equally delighted when I am asked to make public presentations but only with the knowledge that usually Dr Maggie is close by.

All this learning and re-learning has brought about the opportunity for me to be extended the honour of attending the Alzheimer Europe Conference and delivering a Presentation to this influential body. I will be representing The Scottish Dementia Working Group on this occasion and will be given the opportunity to further their aims. By a stroke of good luck the Conference is to be held in Malta, so I am also getting the added bonus of having some time in the sun.

I am giving a presentation next week. The theme is “A Dementia Friendly Community”

I think it goes without saying but I will anyway. Thank you Dr Maggie Ellis.

Brian’s blog – Tuesday 2nd April

Hello again. I have not been posting any blogs recently for two reasons. Firstly I really needed a long break. Also, my service provider completely changed my mail settings and this confused me quite a lot. When Doctor Maggie came to see me last week she very carefully demonstrated to me how to operate the new system. Obviously I am very reliant on Doctor Maggie’s assistance when something like this happens. I think I have said before that occasionally I will have these “temporary blips” but when they happen now I know help is at hand.

I had also become aware recently that I was getting into some difficulty using my i.Phone.

My Internet was dead slow to stop. I searched out all the previous written instructions that Dr. Maggie had given to me and soon found the answer. My BT Home Hub connection had become loose at my desk top computer. I followed the instructions and was soon back on-line. This confirmed that all those times Dr. Maggie told me to record everything was proving to be very good advice.

I am still a compulsive button pusher when it comes to all kinds of technology, but on most occasions I can get myself out of trouble. I must admit it becomes a bit awkward when I am feeding information into the Sat-Nav. My wife S tends to ignore my suggested routes and usually she drives to our intended destination without my help.

This week I am being re-trained in our kitchen. S has been concentrating on my use of our Micro-Wave Cooker. Something I used to find incredibly simple before my diagnosis has become a major risk in our household. I thought it was well within my grasp to use it without any problems but that proved to be incorrect.  S has become used to leaving A4 notes with a definite instruction saying “DO NOT USE”. With a lot of patience, S is doing a great job and I am slowly getting the idea of safety in the kitchen.

S recently requested the Fire Service to come and assess our home. This was done and we are both more comfortable with the situation. They have given us a very personalised written assessment which will link up to my Community Alarm and Smoke and Exit Alarm.

I am now very comfortable with the technology that has been put into place in our house  for our continued safety.

I feel very proud and honoured that Dr. Maggie has invited me to give a Presentation at The Dissemination Conference of the COBALT Project in three months. That is the easy part. The more difficult thing is. How can I possibly say thank you to Dr. Maggie for her help and incredible patience during the last six months. It is my intention to continue writing the Blogs in the future and thank you for taking the time to read them.

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

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.

Brian’s blog – Monday 26th November

I attended another conference last week, organised by Alzheimer Scotland. The conference was titled The Dementia Dialogue. The aims of the day were to collect evidence that could be put before the Scottish Government before they produce their Dementia Strategy for 2013. The audience was made up with people with a diagnosis of Dementia, their Carers and Professionals involved in The Care of people with Dementia.
There were many speakers and I found it very interesting to watch and listen to their methods of presentation. I was impressed most with those who used Power Point, and I have decided to use this method when I have to deliver presentations.
Also enjoyable was watching and listening to those who used short video clips to get their message across to the audience.
Maggie has already given my wife a short lesson to enable her to video me doing a short visual blog. Watching the finished product has served to boost my confidence yet again.
When I reflect on the last ten weeks I am amazed at how much I have learned and re-learned.
This is a result of my being asked to contribute a small offering for “COBALT”
During this period I have had little time to worry too much about my Dementia.
Off course, I still have my silly moments. An example of this would be, me taking hours to write up a piece of work, then managing to delete it all with one random push of a button.
Some of you who are reading this blog may have had the same experience. It certainly gives me some much needed typing practise.

Brian’s blog – Monday 19th November

I have just been looking through my files and realised I had not posted a blog recently. There are two reasons for this happening. My Dementia has been slowly progressing, (the LEWY BODY one). Nothing too serious but, noticeable to those close to me. My memory has proved to be problematic because of the nature of my Dementia. This can occur for long periods or daily and even hour by hour.
On the brighter side I have been elected on to the National Committee of The Scottish Dementia Working Group. This organisation is run by people who have Dementia. The committee represent others who have Dementia and their carers. The S.D.W.G. are funded by Alzheimer Scotland. The committee has a keen interest in the political departments who have any interest in Dementia Strategies. Being a newly elected member I will have to give a presentation to the rest of the existing Committee. Also, I will also be a representative of Alzheimer Scotland when giving talks, negotiating and presentations. I can see where the use of my I.PHONE will be beneficial. I will be able to research information I may need at short notice. Maggie has offered to teach me how to use Power Point.
So at this time I am well and looking forward to future challenges and have to say, the positives are easily outnumbering the negatives through this part of my Journey through Dementia.
It is my intention to keep posting my blogs. They have become part of my life.

Brian’s blog – Wednesday 14th November

Once again I have been unwell so I have not been posting any blogs for more than one week. I have been unwell as a result of “too much” Internet research. I went very deeply into one of my Dementias and discovered that there was a life expectancy of seven years after the original diagnoses. I suppose to say I was shocked is an understatement. However I eventually shared this new information with S my wife. As always she showed me love and understanding and spoke to me at great length about this news. I also talked to my Dementia Advisor at Alzheimer Scotland and slowly I was back in the Loop. I realised that recently, some very positive things had happened to me. I was successfully relearning my pre- diagnosis ability to use the computer. Thanks to Maggie, I was also learning to use my new I.Phone. Other things have happened recently as a result of meeting Maggie such as delivering presentations and public speaking with a new found confidence.

Maggie came to see S and me to-day. She listened (as always) to what had happened to me since our last meeting. She encouraged me to continue to take things slowly but positively. She asked me how I felt about doing a video as part of the programme. Maggie demonstrated to S how to use the phone as a camera. She left us until the video was finished and when she played it back she said the quality was good enough to use with a little piece of editing. Maggie then showed S how to e-mail it to another phone. S was delighted that she too was now more confident using the phone. I think I may consider putting a security lock on the phone or better still give S a phone for Christmas.

 

I feel encouraged with so many good people around me to help in my hour of need. I include in this the people who actually read the blog. As long as I am doing the blog and know that others are interested, it gives me that extra strength and confidence. Thank you all.