Reflection…..

It’s again been some time since I posted on my blog. It hasn’t been a conscious decision, but I really don’t know where time has gone. It’s a positive sign though because I’ve been very busy on a number of projects and activities.

The most recent one was a holiday to where, I understand, my ancestors came from, Ireland. I don’t know any of the history and neither do my immediate family because we had little contact with our father,Ā from when we were all quite young. Still, I’d always wanted to go, and with a promise to my younger brother Gary, and the support of my partner Glenys, I’m just about to leave this beautiful country that I have a sense of home with.

I often saw the name ‘Quinn’. There was signage on coaches, pharmacies, lawyers, pubs, shops. Also, I took every opportunity to start up a conversation with anyone who’d listen and the usual reply was that there were many Quinn’s from the County where the listener had grown up. So I guess someone is related to someone else here!

We had a 12 day tour of many backroads areas and rugged but beautiful countryside as well as the lushness of the patchwork green fields. Like many countries the history is fascinating, and I wish I could remember all of the events and dates. (Thank goodness for the internet these days)

Above all I think this part of our holiday reminded me about connections. Sometimes those connections are with people in your family, with close friends, with places, and with memories of the past and hope for the future.

 

Giving it my best…

If giving the world the best I have, means I get kicked, loved, or ignored, it is still my choice to give it my best, and to speak up for all people with dementia, for our human rights, our disAbility rights, and for inclusion, no discrimination, reducing stigma and isolation, and for respect, including respectful language, and as well as against Prescribed DisengagementĀ®ā„¢.

Thank you Faith Riverstone for sharing this in the comments of one of my blogs recently. I decided to add it today, as many may not have seen it. The messages in this video areĀ important.

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Reaching out to tell some of my story.

Recently Glenys and I have both been involved with Queensland Health’s Metro South Health, on some Dementia Steering committees.

As September was Dementia Awareness Month, we were involved with them for a couple of hours one morning for some filming to make a few videos.

This is a part of my dementia story, Ā where I discuss a number of personal aspects. It was included in their enewsletter. You might enjoy reading about what else is happening here in Metro South Health. Here’s the newsletter, too.

https://www.vision6.com.au/em/mail/view.php?id=1771081&a=55528&k=8730744

 

September is the month of Awareness.

Where does my time go?

I know that many of us take every opportunity to raise awareness about the many aspects of dementia whenever we can, but I particularly wanted to write more this month.

I had great plans to at least try to write a post each week throughout September which:

… in ‘my own backyard’ we launched the Wynnum Dementia Friendly Community with Ā the support of fsgAustralia. This will benefit the 7-8 smaller suburbs of the Wynnum/Manly area, in this unique pocket of suburbs on the beautiful southern bayside of Brisbane. The whole community will benefit.

…at the local level, Queen Elizabeth II Hospital has ‘Dementia and Delirium Awareness’ Month;

…at the national level, Alzheimers Australia’s theme is ‘You are not Alone’; and,

…at an international level, Alzheimers’ Disease International’s theme is ‘Remember Me’.

Meanwhile, there are ongoing talks by various members from Dementia Alliance International (DAI) with the World Health Organisation about the recognition of Human Rights for people living with Dementia.

This simply highlights that Dementia is everyone’s business.

Well, I’ve been busy with so many different commitments throughout September that now, at the last moment, I have the opportunity to post here.

I suppose for me it’s not just about time, it’s also about the difficulty that I have to organise things, but that really doesn’tĀ matter. We all do the best that we can.

Enjoy some photos of the Bay. We only have to walk a very short distance to enjoy it. This is the view from our Dementia Friendly Community.

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The Wynnum Jetty. The piles from the original Jetty are now engraved artwork.

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The local Quandamooka People.

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There are about 8 different indigenous tiled, picture stories.A different one tells that ‘when the wattle is in flower, the tailor are running.’

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Indigenous art that tells the stories of the bay.

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Looking towards Manly, a leisurely 20 minute walk away.

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Looking north from the Jetty.

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Affectionately known as ‘the whales playground.’

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Looking out through the Pandanus trees.

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A small part of one of the children’s playgrounds.

 

A different week: a different story.

Gosh it’s been a busy week. However, this has just reinforced how great it is to acknowledge the benefits that come with a diagnosis of Dementia.

For weeks now, even whilst I was still in Europe, I was getting so tired so easily. Ā It was hard to feel much at all. But that’s my Depression ‘talking’ more than my Dementia. Then I had the additional issues and doubts about my dementia that I recently posted about.

Also, during the fortnight prior to Australia’s federal election I was heavily involved in a media campaign with Alzheimer’s Australia to discuss Younger Ā Onset Dementia; what I’m trying to do to live as well as I can with my diagnosis; and, the hope that the major political parties would release policies for a National Dementia Strategy before the election (and hopefully a long-term bipartisan one). I had 9 interviews in 8 days.

Then Glenys and I were invited to be on a Reference Committee with Queensland University of Technology researchers and the Brisbane Airport Corporation, who are working together to provide Dementia inclusive and supportive airports (both the domestic and international). They wanted feedback from both the lived experience of someone with Dementia and also, Glenys’ perspective from a CarePartners experiences.

And then I was privileged to be able to host Agnes Houston MBE and her daughter Donna, from Scotland.

Glenys and I, as well as Eileen and Dubhg Taylor are lucky to have Agnes and Donna stay with us, whilst we show off this part of the world. Winter is a great time for a Scot to visit Brisbane.

I feel reinvigorated!!

Hope.

What I have recently noticed is now happening to my brain, reminded me about an extract from a book, ‘The Things We Keep’ by Sally Hepworth. It reads ‘Dr Brain once told me that an Alzheimer’s brain is like snow on a mountain peak- slowly melting. There are days when the sun is bright and chunks break off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days when you stumble across a trail you thought had melted, and for a short while you have something back that you had thought had gone forever.’

I think that I’ve nearly recovered from my travelling back from presenting at ADI Budapest and the holiday afterwards, in Italy. It’s been 6 weeks today since arriving back in Brisbane, and although I’ve been quite busy (media commitments which I’ll post about when I have more details), I’ve noticed that my symptoms have improved from 6 weeks ago.

However, I’ve also noticed changes which I hope isn’t the new me.

My lived experience with dementia now, isĀ that I can be told something one day but have forgotten the next. The extent of this is new for Glenys also, and the first few times that it happened, she didn’t realise it either, so the conversation was more like I imagine that it would be in most households when busy lives mean that communication can be in passing; or not fully heard; or, missed because of being preoccupied. When I became aware of it, I raised it with Glenys and we discussed those few times that I’d noticed it and I asked her if she’d become aware of anything. That’s when I realised that it was more evident to her if the initial conversation had been during the afternoon or evening but she hadn’t mentioned it to me.

This is worrying as it means that my memory is fading.Ā It also means that my ability to process information which is only one symptom, but a major one of my Alzheimer’s Disease, is getting worse.

It has become a source of constant frustration for me and in fact, sometimes I’m starting to doubt myself, which has lead to further confusion and frustration for me.

In spite of the lifestyle considerations I have factored into my life, including such things as good nutrition, mental activities and exercise I feel that my cognitive ability is diminishing ever so slowly but inexorably. But I suppose I could have expected that given I have Dementia!!!

Yet, things that I thought would fade from my memory like recent social events are still uppermost in my memory.
This is an example of the unpredictability of the progression of dementia.

Glenys’ thinking is that because it took at least 10 weeks to fully recover from my Camino trip and the complexities of that travel last September, that perhaps it’s possibly that I need more that these past 6 weeks, after all I have just completed 9 lengthy radio interviews in 8 days and an hour long prerecorded telephone conversation.

Glenys still has hope, but who knows! Is it as Sally Hepworth writes: ‘chunks break off all over the place’ OR that I will ‘stumble across a trail you thought had melted, and for a short while you have something back that you had thought had gone forever.’ I have to hope too I guess.

….for as long as possible

Living with Dementia was not a life-style choice that I made consciously.

For me, a diagnosis of Dementia has closed certain doors, yet opened others.

It closed the door to my ability to continue to work in paid employment, in an area that helped to provide a sense of identity. The forced departure from a career that I loved, and I think that I was well respected in, suddenly occurred two years before my diagnosis. This loss took some time to ‘get over’, if in fact I have fully. As many of you know, I worked in and managed all aspects of the education of primary school students in a large school. Ā A valuable profession. However, I no longer had theĀ capacity to do many of the things that I once took for granted like problem solving, decision making and planning.

More recently, doors have closed on friendships that I would have thought could have withstood the test of time. But sadly, they didn’t.

Although Dementia has robbed me of my ability to do many things, and others that continue to emerge, it has opened other doors, hitherto, not a part of my previous life. New supportive friendships have been established and I have met many people who’s paths I wouldn’t have crossed, without Dementia.

One of the doors that opened is as a result of my membership of Dementia Alliance International (DAI). Only people living with a diagnosis of dementia (PWD) can be members of DAI. One of the initiatives of DAI is their weekly on-line, support hook-up session, facilitated using a medium called Zoom. We can chat about anything, including the weather; how we’re feeling that day; our concerns and share solutions; what we’ve been doing or planning to do.

It was during a recent zoom meeting, one person said a positive comment about our lives and the conversation went from there, with more positive comments and some laughter. Thinking about the conversation afterwards, I realised how truly lucky that I am that I still have the capacity to talk, to think (if somewhat impaired) and to socialise with others.

This highlighted to me how precious life can be, and that we should never take it for granted. I felt blessed that I am able to still do the things that I can. We should make the most of every moment.

My thoughts then drifted to thinking about other new doors that have been opened to me. For the past two years I have become a strong advocate for living well with YOD (Younger Onset Dementia) which has involved public speaking engagements in local, state, national and recently in international arenas. The purpose of these speaking engagements is to educate the community about the existence of YOD and about the stigmas and stereotyping associated with dementia that abound within the community, which must be addressed and dispelled. I believe that sharing my story, and listening to the stories of others who are doing their best to manage each day, and look for the positives when they can, will help change the pubicā€™s perception of dementia. It is not only ‘end of life stage’. By doing this, I and other PWD hope to demonstrate that a PWD can still live a productive life long after diagnosis.

To sum it up: Travel takes a lot out of me for weeks and months, and I still haven’t fully recovered from our recent trip to present at ADI Budapest and our holiday. However, I need to get some perspective again about the doors that have opened for me, and how lucky I am. So I’ve decided that despite how I’m feeling today, whist I still have the capacity I will continue my advocacy work as it gives me a new found sense of purpose in life. Glenys shares my passion and I’m sure she will continue to support me moving forward. We are a good team together.

I stand by my comment:

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“Having a diagnosis of Dementia is not a lifestyle choice. However, now that I have Dementia, I can choose my lifestyle. And I choose to Live Well with Dementia.”

 

Why can’t I find the words?

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It’s hard to explain what you don’t understand…..

even words that so easily come to my mind, can not be found…..

i am stuck here in a vacuum with not a word

to explain how it is that i am….

if only i could utter a word that may open the door

to give a glimpse of my world ….

but alas, most times it remains closed to myself

and to those that i love….

and so it is in this world of mine.

John Quinn

Sent from my iPhone

“…..because you can walk.”

I realise that many people need a little time to ‘get over jet lag’, however it’s not just jet lag that gets me.

As many of you know, I live in Brisbane Australia. In August 2014, it took me 3 days to recover from a trip to Sydney (about one and a half hours flying time and in the same time zone); April 2015, it took me 3 weeks to recover from a trip to Perth (about 5 hours flying time and two hours behinds Brisbane…yes Australia is large); September 2015, it took me more than 10 weeks to recover from a trip to Spain (8 hours behind Brisbane time) although I not only had the travelling/ flying/ jet lag issue, I also had the physical exhaustion from my Camino Challenge and the emotional upheaval from the actions of ‘so called friends’ not recognising the extent of the type of support that I needed and dismissing a request for specific help.

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So this time, for our trip to Europe for me to present at ADI Conference Budapest 2016, Ā our ‘holiday’ was primarily planned to allow me time to recover from the trip from Australia pre-Conference, and afterwards in the hope that when I arrived home I might not ‘loose’ more than 10 weeks of living. And yes, it was a perfect opportunity to visit some places that we’d never seen. Even so, it was planned in a way, to stay for a week at a time in one place with days of doing little etc, instead of touring as many cities and sites nearby as possible or going from dawn to dusk getting in as much as possible.

Glenys, in consultation with me, also arranged for wheelchair assistance for the trip home when, for the previous 4 days, she noted things about my focus, visual disturbances, extreme tiredness, and communication as well as the usual problem solving and organisational issues, that signalled to her that I wasn’t managing as well as usual.

Our approach was that it was a trial for Rome Airport to see how I, as a reasonably young and very fit male would accept and possibly recognise any benefit in using wheelchair assistance. It was arranged at that stage for wheelchair and personal assistance all the way to Brisbane. And, I did notice a benefit. I relaxed into the wheelchair not feeling that I needed to be hyper-vigilant about which direction to go to the Gate, or about the time. These are things that Glenys had for some time taken responsibility for, but it was only now that we both realised that I also had been trying to step up to the mark and felt a responsibility to be involved. Even organising the suitcase onto to the weighing machine through the checkin process puts stress onto me to position it correctly.

Staff were extremely helpful and everything went smoothly in Rome. Also, the external stimuli, for example the noise and the large rushing crowds moving quickly at the Airport, didn’t overwhelm me as much as usual.

However, it was a different story in Dubai, because “you can walk”!!!

Initially we didn’t realise that “just walk up to the person carrier vehicle” meant, to walk 200 metres then to the monorail then Ā another 200 metres to another person carrier vehicle, to then walk ….etc etc etc!!! AND we arrived at Dubai at 11.30 pm! so given that I’m usually in bed by about 8 pm, do you think I could cope with the thousands of people rushing everywhere or the uncertainty. So Glenys talked to me about whether I preferred the wheelchair or not….which I did, so she again requested one for Brisbane. The staff’s response was that “because he can walk he doesn’t need one.”

However they obviously reluctantly accepted the request because not long afterwards, literally at the last moment, they changed the boarding Gate from 7, to 27!! which in Dubai is not a short distance away. So into a wheelchair I went for the ‘excursion’, and we arrived, with my assistant wiping his brow, as they were about to close the Gate. But at least we physically made the plane.

In Brisbane, I told Glenys that I still needed the wheelchair. It was again said, “but you can walk can’t you?” and Glenys quietly mentioned why I needed it, despite my appearance and physical capability. After that, I received the support that I needed, and in addition, the personal assistant was very obliging all the way through Customs and Immigration to the Taxi rank.

I was in two minds about having to highlight that I have Dementia and my needs are not obvious to others, but then I balanced that with: in the end, I needed support, and anyway, maybe one of those people may be more aware, and not question the next fit person living with Younger Onset Dementia that comes into their lives.

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A glass half empty…..not half full?

The subject of this blog was prompted by a statement made by Glenys the other day. This scenario has apparently happened often, particularly over recent years: it’s my negativity as a first response to hearing something, rather than considering a more optimistic stance about something or someone.

This time Glenys responded to my reaction with, “Why can’t we just have a conversation about something and discuss any concerns without your immediate negative reactions.”

These responses may be words combined with a look of frustration, or as she described in this case, combined with “a sniggering laugh”. And in this case, after reading the article that she had shared, and after her above mentioned comment, I said, “that’s actually well written and a good perspective.” But it was sort of too late. The issue was out there.

Furthermore, Glenys also reminded that I was not always a negative person.

I have pondered these comments and come up with the conclusion that Glenys is right in her assessment of my general attitude towards many things nowadays.

I reflected on the chronology of my negative disposition and ascertained that it’s origin stems from a number of events that have occurred in recent years.Ā These events incapsulate the period of non-diagnosis, then my diagnosis of Dementia, and now post- diagnosis.

I don’t want to blame Dementia for the way that I tend to view things, however, it is difficult to reconcile a state of optimism with a terminal, degenerative condition which travels under the name of Dementia.

In my previous blog I made reference to the insidious nature of Dementia. But certain things are omnipresent. They are always there despite my best intentions to live as well as I can. Also, my living as well as I can is reliant on support, in this case support from Glenys, therefore I guess it’s in both of our interests for both of us to try to lessen frustration and negativity. So I wonder too if it’s just a habit that has developed; or that my personality is changing; or, that it’s a part of the information processing that I have difficulty with. Glenys says that she only mentions something on the days that it occurs many times, or when she’s tireder. Either way I suppose her tolerance is lower.

Sometimes being surrounded by positive people and their positive attitude to life is just not enough.

My subconscious thoughts and the impact they can have on the way you view life is summarised with my ‘A’ for Attitude, in my N.A.M.E.S.Ā As a person living with dementia this is one of the lifestyle choices that I find the most difficult.

These days ‘my glass could be described as half-empty’. Maybe when I’m tired or not functioning as well, that letter ‘A’ for attitude is what I have to concentrate on.

Sent from my iPhone