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

“You’ve got 4 minutes.You can make it.”

The previous photos were of our visit to the Holy See. This is the smallest country in the world (.44 square kms) and is within the city of Rome. It’s small, but big economically. (Revenue was about $US 202 million in 2001!) As the center of the Catholic Church, it’s income comes from voluntary contributions of over 1 billion members of the Roman Catholic Church worldwide; from rents; from the sales of postage stamps (yes we saw the Vatican Post Office), tourist mementos, and admission fees of museums. The value of their property around the world is beyond belief.

There’s a lot of controversy in Australia and around the world, about the actions of certain priests and cover ups by the church, and rightly so.

Glenys hoped to visit the Cappella Sistena, a chapel in the Apostolic Palace, the official residence of the Pope. This is also where the conclave decides on the new Pope. It was originally known as the Cappella Magna.

The draw card for her was the frescos on the Sistene Chapel ceiling, with the most famous one being ‘The last Judgement’, by Michelangelo.

We didn’t know that they close the HUGE outer doors about 90 minutes earlier.

….We stopped at an information centre for directions and were told that it’s just up a bit in an opening in the wall. Well, that was an understatement!!

The opening was to a very long street, so we followed the limited signage. About 1 and a half kms further where the signs became absent, Glenys asked one of the many security soldiers for directions.

We turned in the direction and a man who must have overhead her said, “It closes soon but you’ve got 4 minutes. Hurry, you can make it.”

All we could see was another long street with a huge stone wall of about 15-20 metres high.

I took off running, and Glenys apparently said “I can’t run that. It’s okay, we weren’t meant to get there.” But I was off and didn’t hear her. Luckily I turned around and saw that she was trying to keep up so I slowed and waited and told her to come on. We ran, and we ran, and we ran…. along … and around corners…and up long slopes…and finally got to the door, about 700 metres from where the man told us to hurry.

We ran to the only door that we could see and someone said that it was the Exit and pointed to HUGE doors about 20 metres away, behind us, in the wall. The right side was already closed and the left side only open about 30 cms and still closing. A hand was all we could see. Glenys stopped. Then it opened a bit and an elderly man’s face looked out, he opened it wider then started to close it again. Then he saw us running up and down the roped queue lines and stopped!! He held it slightly ajar and we walked in, Glenys huffing and puffing, and so grateful and I had just had my short afternoon jog.

You are asked to take no photos whilst in the Sistene Chapel. But some others were disrespectful and did. I’m glad we got there. That guy was right, we did make it.

I don’t think that it was a 4 minute mile but I think that it closed a little later than scheduled and we were very lucky.

That felt so good.

It’s amazing how easily you forget things, and how that affects your confidence. I started to feel overwhelmed just thinking about blogging again.

But it was more than that. Often I was so tired that for weeks on end I didn’t even remember that I had a blog! That’s a worry. Then once or twice, I remembered but I was so tired that I didn’t feel confident that I could remember how to blog.

But for now, here are a few more photos of my Italian holiday. I need to post them while there’s good wifi because in our Hotel in Rome, it was almost nonexistent from our room.

…..We caught a hop on/ hop off bus and we were going to stop at the Colosseum but there were 100s of people just in the queue to buy tickets. I couldn’t face that. I then said that I just wanted to stay on the bus and not see anything. That’s when Glenys suggested we try the Trevi Fountain but if it’s too crowded or too much for me, then we’d get the next bus. I’m glad now that we did that. She held my hand and elbow throughout and that reassures me. Afterwards we walked back to our Hotel where I tried to sleep, but couldn’t. So we had a healthy lunch and some quiet time then reassessed the day. Taking those few hours out to rest, helped.

Next, The Vatican. Again reassessing all the time.

image

The Vatican

image

image

There’s more marble in this city than you can imagine. Statues, floors, tables, columns, walls….its every where. The sculptures are examples of fine talent and artwork.

image

Courtyard inside. Massive baths of marble.

image

Spectacular ceiling of paintings.

imageimage

image

I couldn’t look down. I’m the one who later tripped over the sign that says “watch the steps”! (No photo luckily) I didn’t see the sign or the steps. I wonder what’s happening there! Not the first time that I haven’t seen what was obvious to others. Remember my traffic light and stairs stories.

image

The Holy Door.

 

 

Can I remember how to do this?

It’s been 3 months since I last posted and there’s been many reasons for that. A lot has happened but as a result I’ve ‘lost’ 100s of followers, and that couldn’t be helped. I hope that I can still say something of interest that might slowly build it up again.

Where am I today? Well my physical location is in Italy, on holidays, before presenting at Alzheimer’s Disease International Conference Budapest 2016. Yes, a lot has happened.

Over time, I will try to weave some of it into my blog. In the meantime, forgive me if I indulge in sharing a few photos of my Italian holiday. Doing so will give me the confidence that I can still manage how to post and do my blog, because I have often doubted that over the past weeks. It’s been a tough road for me recently but now join me in my trip.

PS. If no photos get posted, then I HAVE forgotten how to. 😦

And I’m again on my iPhone so the formatt will be different.

image

By chance it was my birthday the day after arriving in Rome. I turned 65. We started the day having a relaxing breakfast in the Hotel’s courtyard.

image

Trevi Fountain Rome

image

I threw a coin into the fountain too, ensuring that I will return to Rome one day.

image

Yes, still my ‘Achilles heel’, but who can resist pistachio ice cream in Italy on their birthday!!?

image

Spaghetti bolognaise for my first Italian lunch.

Merry Christmas and a Happy New Year

Here in Australia the commercialism of Christmas seems to start earlier and earlier. By the end of August decorations are for sale in the stores. Christmas songs are being played in shopping centres mid-November. Christmas trees that used to be decorated only approximately two weeks before Christmas when I was a child, then for some reason it became December 1st, this year were being decorated by about November 20th sometimes with an apology for it being up late.

One night early December, the news was reporting on the danger of spontaneous fires happening in the lithium batteries of Hoverboards, when they reported that these were not only the latest craze here in Australia, but also because of that fact, were commonly being purchased as Christmas presents. The cost range was between $800 and $2000. So it was reported that you had to ensure that you bought the better quality to reduce fire risks as they met the Australian Standards!! $800-$2000!! For one gift, for one person!!

Now, I know that I couldn’t really get into the Christmas spirit last year. I finally realised (about Boxing Day) that it was because I was still recovering from my travels; the intensity of the Camino pace; and, the loss of friendships. In fact it took me about 10 weeks after arriving home from overseas, before I felt that I was at last able to function cognitively again, as well as I had been, prior to the trip.

However, I also started to realise how that people put such false emphasis on what this joyous season is about. Some people approach it purely as a time of religious significance. Some add the happiness of family time to its importance. Some will have their own personal thoughts about it.

Regardless of one’s personal reasons how did it move so far from them, to the need to spend money that few of us really have? What are the current benchmarks for whether we have had a good Christmas or not?

I think, well I know, that my recent experiences have reminded me of what I value. Also, I think, well I know, that my Dementia ‘allows me’ to simplify my thinking because it takes too much effort some days. And I think, well I know, that whatever results in happy, stress free moments means better days and for me, that means functioning better.

I wasn’t able to write this post, or in fact any posts before Christmas simply because I wasn’t doing so good. I felt though that I just needed to express that because of these above comments, I know that my focus for “and A Happy New Year” means so much more than just a dismissive-type comment in passing. I think that anyone who is diagnosed with a life-changing medical condition has a similar approach.

So for 2016, my wish for you is everything that you NEED. My hope for you is to be surrounded by kind and supportive people……and in keeping up with technology, that may only be online friends, who understand and are supportive. Let each moment of each day be our focus and enjoyed.

I truly hope that you had a Merry Christmas and that 2016 is that last paragraph for you.

A busy hiatus.

It has been over 4 weeks now since I wrote a post on my blog. All I can offer in my defence for this hiatus is that it has been an extremely busy time for both Glenys and myself.

Before we left to walk and cycle the Camino de Santiago, we made commitments for 4 speaking engagements, on our return.

However, because Glenys had knowledge from other travel experiences about how long I take to recover, when the planning started for just the first presentation, she consulted with me and we decided that I shouldn’t do it until November to ensure I had the best opportunity for recovery. Before long one grew to four! I just kept saying yes and she had to negotiate dates etc. (Sometimes my PA needs a PA, lol)

Also, whist we were overseas we were contacted by Denise Craig (Co-chair, Statewide Dementia Clinician Network) to invite me to be the keynote speaker at their Qld statewide forum to be held on November 6. The theme for this forum was Dementia and Physical activity- Keep moving. Knowing that I was right into exercise, and at the time of the request still walking and cycling 825 kms across the top of Spain, and I’m living with Dementia, she thought I would be the ideal person to present to this network of clinicians, which included: a neuroscientist, physiologists, geriatricians, social workers, neurologists etc.

So this made it five talks to present in three and a half weeks! They were:-

Lowood Friendship Group, October 27; Statewide Dementia Clinician Network Forum , November 6;
Probus Club of Wynnum, November 12;
U3A Brisbane, Nov 16; and,
Probus Club of New Farm, November 17.

Also, during this time Glenys and I sent off a submission for me to talk at ADI (Alzheimer’s Disease International) Budapest Conference to be held in April 2016. The theme of my talk is “Exercise helps me to remember my ‘NAMES'”. I thought that I’d done a blog post about my NAMES, and I probably have but can’t find it now. So it looks like that’s going to be a post soon. It’s an acronym I use to talk about the life-style considerations to take into account when ‘living with dementia.’ Getting back to the submission, I’ll find out in January if I was successful.

I have also completed an E.O.I. to be a member of the Queensland Health Consumer Collaborative. This is the first time that I have applied to become a consumer advocate about health rather than only Dementia. It’s policy-making. I’ll know soon if I was successful. These are all experiences that I can learn from even if I’m unsuccessful. Applying takes me out of my comfort-zone a bit.

I am gradually getting back to a regular exercise routine however, it’s different to what I was doing. We are also exploring the possibility of me adding Pilates to my exercise program.

Recharge the batteries.

I’ve been really struggling for the past two weeks since arriving home. It’s a combination of jet lag, the demand of the gruelling pace of the Camino and other issues that I’ve found quite emotional.

Because I have problems processing information, I’ve had a great deal of difficulty with a few situations that have included family and friends involving serious health issues of others who are close to me and a number of other matters.

So last Friday we went up the coast for a bit of relaxation, stopping at one of the surf lifesaving clubs for lunch. I didn’t really go for a walk along the beach, but I enjoyed getting the sand amongst my toes.

Time out but still advocating.

Time out but still advocating.

We went with some supportive friends. You know the type, the ones where you don’t really have to talk about what is troubling you, but they understand.

1000’s more know now!!

My primary goal for completing the Camino Frances from St. Jean Pied de Port (SJPdP, France) to Santiago de Compostella (Spain) was to raise awareness about Younger Onset Dementia (YOD) and as a secondary, but equally important goal, to raise funds for projects to assist people diagnosed with YOD, and their families who live daily with this chronic, terminal, degenerative condition.

Glenys and I wore our T-shirts everyday, including our flights from Brisbane, all 4 days in Paris, travelling by train to SJPdP, 825 kms along the Camino, the train to Madrid, all 4 days in Madrid, and 3 connecting flights through Frankfurt, and Bangkok to Brisbane. This was to attract attention to the reason for our walking the Camino. And it worked!

There was not a day that passed that Glenys and I weren’t speaking to complete strangers about YOD. We spoke to countless people from numerous countries. I’m talking 100’s and 100’s!!!, and SO many have shared to ALL of their contacts via social media and email. So that has to be 1000’s more people now know!

At all times we had an interested and captive audience, because Dementia is well known. Many knew of someone who had been diagnosed with the disease. Few knew that younger people can also be diagnosed with it, although some had direct contact with YOD, too. But most were unaware that people under the age of 65 years of age can have this terrible condition.

They were very interested in the story we had to tell and provided enormous encouragement to us to continue our crusade to spread the word; to reduce the stigma associated with dementia; and wished the very best wishes for me to live well with the condition, and to continue to perservere with what I’m doing to try to slow the progression. Some showed a keen interest in my ‘NAMES’.

Our fundraising efforts were modest, and  as well as including the:

bit.ly/johnquinncamino

everydayhero fundraising page, we received donations from a cross section of people, in some unusual locations including large albergues and obscure coffee shops kilometres from nowhere. Glenys and I were heartened by people’s generosity (and I’d like to add thanks to Kathy and David and their group right in front of the Cathedral de Santiago as we arrived).

Although this Charity Challenge was a challenge in more ways than I can explain here, we arrived home with a deep sense of satisfaction of our efforts to spread the word about YOD. We sincerely hope that our visit to Spain will stimulate further conversations around the implications of a diagnosis of YOD. We hope that we have made an impact.

I’m going to try to do all posts again now.

I’m happy to be home. We arrived 36 hours ago.

I’ve slept a lot. But then there were many complexities in the nature of what I’ve just done during the last 45 days, that would have been exhausting for many without Dementia let alone someone who has the processing problems that I have. My energy levels are still recovering so I’m going to have to do none of my usual exercise regime for quite a while. I just can’t do it.

At least Glenys is ensuring that I eat well to help recovery, and given that she’s also tired, we’re eating out until she gets to the shops. But it’s not the takeaways that are often bought. Yesterday it was mushrooms, tomatoes, spinach and eggs on toast, with fresh juice and a coffee for breakfast.

Normally I’d go for a swim this morning. But I’ll sleep-in instead and join my friend Doug, later at the Manly pool after his swim, for a chat and a coffee. I’m still needing to talk to many about the trip and many aspects of it, but that still tires me a lot. It’s all a balancing act. I’ll can slowly ride my bike along the esplanade because it’s only less than 2 kms away, or I’ll ask Glenys to drop me off if I need to.

I’m also trying to make sense of the fragility of life. A long term friend passed away only a week before we arrived home. It’s such a shock and completely unexpected. I can only say that I’m pleased that we all had a lovely lunch only a few weeks before we left for Spain. He had faith in me, he encouraged me, he supported both Glenys and me through this Dementia of mine. He was a true friend. My thoughts and condolences are with his family.

Only minutes after hearing that news, my cousin whose visiting Brisbane for a few days, rang. She has just had a terrible time that required 8 days in Intensive Care in Hospital. The doctors didn’t know what was causing the symptoms and her body was shutting down. All’s okay now, and she’s being monitored and under the care of a Specialist, and still undertaking more tests.

You never know what life is going to throw at you, or your family, or friends so it again makes me realise how precious life and time is, and that we need to enjoy as much as possible every moment with the people that we care about and respect. There’s no place for unnecessary conflict or problems that seem to arise from perceived realities, or personalities or egos. There’s no time for conflict or wars. We need to find the time to spend quality time with friends and family. We need to breath and enjoy the sunrises. We need to be there when others need support.

John’s post: sometimes it’s easy to get back home, sometimes less direct.

Well, we made it home in one piece, as they say.

Sad about my suitcase though! Apparently it had an unexpected holiday in Frankfurt. Next time, I should do the same.

There was a change of Airlines in Frankfurt. We initially flew from Madrid with Lufthansa but they would only check the group’s luggage through to Bangkok. Thai Airways then flew us Frankfurt, Bangkok to Brisbane. So really there were two luggage handling situations which introduces possible problems. Mine happened the first time.

But even in Frankfurt they called one of the group (not me) up to clarify the number of suitcases for the group. Yet, still it didn’t arrive in Bangkok.

Glenys quickly reassured me that it would be okay, as I rely a lot on her to help me with travel. I get confused with the noise, the people and all of the external stimuli, but her reassurance and calmness helps and lessens any problems. Sometimes she’ll just hold my hand or put her hand on my shoulder if I’m in a queue in front of her. She settled me, sitting and looking after her backpack and our carry-ons, while she dealt with it.

It was already lodged (within their computer system) to be in Frankfurt and a report sheet was provided. She was told that it would be on route, directly to Brisbane, prior to us leaving Bangkok later that night. Then that was changed as there was no direct flight that day, but it would go through Bangkok and be in the same plane as us, later that night.

Well it wasn’t in Brisbane, but records showed that it would arrive 24 hrs later and couriered to our home in the afternoon.

Been and gone! Glenys rang and got a message bank,  so now we wait. I only hope there’s no problem now because my Compostela stating that I walked the Camino is in the bag.