How did I forget? Now, how will I remember?

Thank you Rhonda, for firstly taking the time to read some of my blog, and secondly for reminding me that I’ve been meaning to google Norman Doidge’s conversation with Paul Barclay, for ABC’s Radio National’s ‘Big Ideas’ program.

In my post dated 20th May 2015, The concept of neuroplasticity gives me HOPE!, I referred to some of the amazing stories about people and the activities and therapies that they’d undertaken which had some great results.

Rhonda has wondered about a link to the interview (which at the time I intended to find, then promptly forgot about).

I had tried to find reference to it a day or two later but I’ve been so busy with other things that it went right from my mind.

So tonight I’ve tried again and discovered that it still hasn’t been aired. But it will go to air on the Monday 3rd August and will be repeated at set times.

I now must remember to tune in at 8.05pm, next Monday!!!

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Each one of us has a story and our reasons.

I was talking the other night about the language about Dementia, with someone else who has a diagnosis of YOD.

She said that many people with the diagnosis prefer to use the term “Living Better with Dementia” rather than ” Living Well with Dementia”.

If I understand her explanation correctly, it’s because of the wider community’s perception about people living with Dementia, in particular the media’s perception, that if you have Dementia then you are immediately at ‘end stage’, and that there is no expectation or knowledge about the fact that we can live a life with potential, with hope, with goals and achievements………………..Yet if we can EDUCATE them to realise and acknowledging that for each of us, there CAN be a lot to give and to live how we choose; there will be huge individual differences in what that may mean; acknowledging that we need varying degrees of support and understanding; and acknowledging that there are still times and days when we ourselves know that some times are better and worse than others………..there’s quite a lot to do still.

I don’t dismiss this concern about inappropriate and stigmatising language in any way. This is probably the main reason that I am doing the best that I can to advocate for awareness about YOD and Dementia.

I’ve given quite a lot of thought to her comment in the past few days.

I realise that some of you have read other references to some of the following, but please bear with me because of its relevance for this topic.

For the last few years that I was working (from about 2003) I started to struggle to achieve what I used to do, either at work or at home. Remember, I still didn’t get a diagnosis until 2010. I was so exhausted both mentally and therefore physically, because of the nature of my Dementia and of my work, that I wasn’t functioning well. I couldn’t plan or organise either aspect of my life and I struggled to adapt to the changes that the unknown was presenting.

When I left work in 2008, I was initially on sick leave while undergoing tests and seeing specialists. Due to, I imagine: the state of ill-health that I was in at that time; the non-diagnosis; the mis-diagnoses which resulted in incorrect medications and treatment plans; the comments made by many indicating that I was a malinger and that I was “rorting the system” as they say; and, the length of time that this continued, I became quite depressed and withdrew and felt very alone with no explanation about what was happening. I couldn’t move on. I felt confused. I didn’t have a diagnosis that I could either deny or accept.

Eventually I was diagnosed with Younger Onset Dementia of the familial Alzheimer’s type. That evoked my memories of my mum and two of her sisters, my aunts, who all had Alzheimer’s Disease diagnosed at a reasonably young age. My mum often wandered the shopping centres in her nightie and lost her purse. So I ask you, do you think……when I WAS eventually diagnosed that I felt joy!!!?? There was no yippee factor, trust me.

My initial reaction to my diagnosis was one of despair, hopelessness and a deep sense of being alone. I was worried that people would see me like the memories that I had of my mum. I didn’t share my diagnosis at all initially and it took years to tell only a handful of family and one friend.

So on reflection, I’d sum up that for those years post diagnosis I was hardly living any valued life. I just existed, had no purpose, no self esteem, no goals, etc, etc. On top of that I was also (not) dealing with my perceived loss of independence due to driving issues.

That was my life until 28th June 2014 when I was encouraged to go to a fundraising function called ‘Bring It To The Table’, by my Key Worker Lynda. I met Ita Buttrose who at the time was Alzheimer’s Australia’s National President. I also met Mary Smith from Aurora Adventures who that evening decided to sponsor me in Alzheimer’s Australia (Qld)’s cycle challenge of 562 kms in 9 days, through Vietnam and Cambodia.

My whole attitude changed because I had heard so much positive language that evening encouraging everyone and supporting people with Dementia, I felt valued, I now had a purpose. That’s when I started to live well with Dementia. That’s when I started to live! THANK YOU Lynda.

I’m personally still very happy in my particular case to use the phrase “Living Well with Dementia”.

I respect that others prefer “Living Better with Dementia” and I understand why. That works for them and there is merit in their reasoning.

But for me for now, I am just happy to be living well with Dementia. And although some days or some times through the day, I still struggle, I’m living well now.

“Gotta Sing, Gotta Dance”…….an old 1952 Gene Kelly song.

I’ve always said that I don’t have a musical bone in my body.

I have never thought that I can either sing or dance.

So trust me, if I even attempted to either sing or dance Gene Kelly’s song, the title of this post, I’d trip over my own feet and, well, I think you get the picture.

However, after watching a YouTube video made by Dr Oliver Sacks, I’ve realised the importance of listening to music and being involved with it through dance or song. Sacks states that people with Dementia appear to respond in a positive way to music, especially to songs that they’ve once known. It stimulates memories and evokes emotions that are usually not accessible to them, and they regain that time of their lives and the identity that they had, from the era that they knew the song. Personal memories are embedded in the music that they knew or sang. They regain a sense of identity for a while, even in those in the severe stages of Dementia. It gives them a chance to regain they life, and their story. They become more lucid.

(I’ll just do the listening at this stage, not the singing and dancing. LOL). See the link on Dementia Links.

I’ve read one of Oliver Sacks’ books, ‘The Man Who Mistook His Wife For A Hat’. It’s a book about Asperger’s Disease. It quite an interesting read because although it’s not about Dementia, it’s about looking at the world from someone else’s perspective. It highlights the idea as to whether or not, a person’s perception is actual reality. Welcome to my world certain days.

Dr Sacks is a Professor of Neurology and therefore he has knowledge about and has written a number of books, on a number of topics, for example, Dementia, Autism, Hallucinations, Tourette Syndrome, Parkinson’s Disease and Epilepsy. One of his books ‘Awakenings’, which was based on the case study of one of his patients, was made into the Academy Award nominated film of the same name, staring Robin Williams and Robert De Niro.

It was his birthday only a few days ago. He turned 82, and as far as I understand, he was still working at the New York University School of Medicine, in 2012. I believe that he is still a consultant neurologist, although his health isnt so good at the moment, due to metastasised tumours from melanoma in one of his eyes a few years ago. A brilliant man who seems to have dedicated his life researching and working with people and writing about particular topics about the brain.

P.S. Okay, I’ll post the link to Gene Kelly dancing also, for those of you who think they can do this. Please be careful. Maybe do as I will and just tap your feet whilst seated. 😀 They always said that Fred Astaire and Gene Kelly each had a talent that no-one else came close to.

It’s no wonder that I’m resting up.

It was mid April when we went to the Azheimer’s Disease International Conference 2015, in Perth.  I couldn’t write about it during the weeks that followed because it took me 3 weeks before I could start to function at the same level as prior to going. I could judge this simply because of the lack of exercise that I was involved in during that time. When someone regularly exercises almost because it’s a habit and friends are there trying to encourage you, it’s ‘in your face obvious’ when you don’t exercise, sleep in every morning and also sleep a lot each day, and struggle to function and make decisions.

Well, I really hadn’t got back into my usual routine and sense of self and wellness, before I became entrenched into 6 weeks of a frenetic programme, to say the least!!!!

I was very busy with local and national interviews with TV Channels 2, 7, 9, and 10 for various reasons about research and Dementia; plus Brisbane’s Quest newspaper’s launch of the 12 week ‘Forget me Not’ brain awareness program; Consumers Health Forum’s ‘Real People, Real Data’ project; KPMG’s facilition of The Analysis of Dept of Social Services Dementia Programmes (to collate and prioritise current federally funded programmes) ; joining Sue Pieters-Hawke (Alzheimer’s Australia’s National Ambassador) as a speaker at Alzheimer’s Australia (Qld)’s 10th anniversary Gala Dinner; and, the many different aspects of the national media campaign about educating the community about Younger Onset Dementia (YOD) and also the ‘No Longer a Statistic’ Key Worker Program (YODKWP) with the launch date, 11th June. This last campaign involved interviews over the phone for newspaper stories; flying interstate for interviews whilst being filmed; a couple of different photo shoots for different purposes; 3 radio interviews for both myself and Glenys independently; and, television (channel 9) interviews. AND, also, Glenys approached Brisbane’s Lord Mayor about incorporating a Dementia Friendly area into a huge new building project in our local community. I also had the breakfast talk with Rotary that I’ve mentioned on an earlier post, and Glenys organised the planning for three more talks in the next few months.

I felt humbled that people wanted to listen to what I had to say and whenever I was able to, I took the opportunity to advocate for so many of the aspects about YOD and its awareness.

Both of us are quite passionate about raising awareness about YOD and will talk to anyone who is interested enough to listen.

Most people are surprised that I have a diagnosis because they see a fit man who enjoys socialising and is able to express himself reasonably well and has fairly good language skills, still. They don’t see the difficulty that I have with any planning or organising of the above mentioned events. They don’t see the extreme tiredness just because I had a coffee with them, let alone the tiredness involved because of the events. They don’t see the confusion that I have leading up to the events which creates internal stress for me, which I then don’t know how to identify and manage with the many strategies that most others can do easily.  They don’t see how much time needs to be set aside to not only ensure some type of success, but to remain in a relaxed lead up to each of the events.

I’m going through a period of down-time and rest at the moment. But I’ll keep up the blog posts. I still have a bit of catch up about some of what has been mentioned here. I have information worth sharing, but just need to post little posts.

Luckily our lives are not always this frantic, but I also know that often my ‘normal’ day can impact in similar ways, except that I would have the rest periods to recover. In hindsight, I DON’T KNOW HOW I MANAGED TO CONTINUE TO WORK FOR AS LONG AS I DID!!!  I imagine that some of you may also find how difficult it can be to manage your day. Do you feel overwhelmed by some of your day to day tasks? Please comment and let me know what challenges you. What strategies do you use? Please let me learn from you.

A bond that’s hard to explain.

I’m starting to realise how much I rely on help from my partner Glenys, not only for support and to make important decisions for us everyday, but also for just being there and encouraging me to do what I can do.

I had a weekend away with a group of mates to support two who were running their 20th Gold Coast Half Marathon. I’ve run about 12 or so Gold Coast halfs, about the same number of Brisbane halfs, a few full marathons and many, many charity and fun runs, and of course the many annual City to Surfs, in Sydney. But in recent years a Half Marathon taxes me mentally and physically too much so I don’t do it. I made an exception to run the Great Wall of China Half in 2013, but that was because it was a goal that the others were taking about doing, and I wanted to be a part of this iconic run.

We all had a great time last weekend and being at the coast in fabulous weather reminds us of how lucky we are to live here.

Still, I needed to keep in contact with Glenys. I txt her and rang her three times, just to tell her what we had done, or what we were planning to do. I’m glad that she’ll be coming to Spain later this year when I walk and cycle the Camino de Santiago with some of my mates…….. just to be there for me.