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,  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  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. 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. 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

For me life has to be simple.

We are still overseas, and the main reason for going was to present at ADI Conference Budapest 2016. I have heaps to post about that later, but for now our added-on holiday is coming to a close. So I thought that I’d post a few thoughts as a person living with dementia.

Recovery from overseas trips and recently even trips around Australia, presents a number of difficulties for me. It’s not only the jet lag that affects me. Travelling is a quite complex experience, and unfortunately I can’t do ANY of the organising, although I think Glenys sometimes wishes that I could. These last 6 weeks had many elements involved and she did a great job having everything flow well.

After returning from my 825 kms walk/ cycle challenge across Spain last October, it took me well over three months to recover!! Thus, when planning this trip Glenys realised more than I did, the importance of factoring in opportunities for me to experience as much rest and relaxation as possible throughout the whole time. Rushing and travelling and people, are stressful for me. Noise and crowds create confusion; not knowing in advance where I can store the luggage; and, even worrying about how to open the train door, basically result in stress and I can’t think clearly, which leads to severely impaired functioning.

In spite of Glenys’ best efforts, when you’d imagine that I would be quite relaxed in a quiet village with gentle walking and impressive views (and culinary delicacies), I have been tired, both physically and cognitively, during this last week. In one case it almost resulted in me walking out in front of traffic. What cars!? What road?

I suppose the cognitive tiredness was predestined to occur, after all I do have Dementia. Although I try to live as well as I can, out of nowhere this thing called Dementia that lurks in the shadows, unexpectedly manifested itself again. It reminded me of my vulnerability and limitations, and the importance of listening to Glenys’ guidance (for when I can’t judge as clearly) and my own sense of well-being. I still haven’t perfected the art of monitoring the things that I do, or more importantly the early signs and symptoms that can lead to cognitive collapse!

For me, life has to be simple.

Sent from my iPhone