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.

Moving on.

Just a quick note to let you know that we leave our Madrid apartment at 5.30 am (Thursday) by taxi to the airport.

2 weeks before leaving Australia our flight was changed and we now have to fly Madrid, Frankfurt, Bangkok, Brisbane! Thanks.

We arrive in Brisbane at 11.50 am Saturday. More than 2 days of traveling, including stopovers (which we’d prefer to not have). But that’s life.

In Bangkok we have a 17 and half hour stopover, so I’ve arranged for a motel room so that John can at least have a shower and a stretch or a sleep.

Anyway, I won’t have much access to wifi. How many times have John or I said that in the last 6 weeks?

We still have some stories to tell and photos to share, so I hope you don’t tire of them :)) and I might even get another post done tonight. But John’s panicking that I’ll be up late and not wake in time in the morning, so I might run out of time.

Let me share the last of the churros and chocolate photos. I think John has been salivating all afternoon thinking of them, after the others agreed to have some after dinner tonight. Well, we are in Spain I suppose but…… there’ll need to be another nutritional correction soon after getting home. Meaning….. less sugars and sweets, again.

Because the Tavern that we choose for dinner didn't have churros and chocolate on the menu, John went on a mission to find the best in Spain. And he got the address for this vibrant place tucked away in a lane way.

Because the Tavern that we choose for dinner didn’t have churros and chocolate on the menu, John went on a mission to find the best in Spain. And he got the address for this vibrant place tucked away in a lane way. The chocolate is literally dripping off.

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I didn’t have any but John and the other 3 did. I forgot to take a photo when the plate came out. There were 24 churros initially!! They left 3 because they were too full.  If only you could have seen John’s eyes. He looked like all of his Christmases and birthdays came at once.   

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A little laneway, but it was busy. This shop had at least 20 tables outside. We were serenaded by pleasant music, by buskers. One or two couples danced for a moment as they walked past. A truly pleasant atmosphere.

John’s post: Support is what I need it to be, not what others decide is my Dementia.

I have learned many things doing the Camino. Perhaps the most significant thing that I have learned is the importance of good communication and the problems that can arise from the lack of it. I know that I’m not good at it even though many think I am.

My experiences on the Camino have also reinforced my belief that many people know very little about dementia apart from the fact that they think that a diagnosis of dementia means memory loss.

My dementia is caused by my brain’s inability to process effectively information which may come from various sources, particularly visual and auditory modes. This leads to difficulty with decision making, problem solving, and confusion. Skills that are required every day to function effectively at home and in the wider community.

It was these skills that were tested during the Camino, particularly during the cycling stage of the journey from Pamplona to Astorga, when I was becoming more physically and cognitively tired. I made some poor decisions then.

My cycling and walking companions have no knowledge nor any understanding about the way these cognitive deficiencies would have on me on a daily basis, and the more exhausted that I get, then the more confused I become.

This happened one night when I was asked by a travelling companion to simply order a table for 10. I couldn’t speak, I became agitated and confused. I was frightened.

Please realise that they still helped me each day, with other things that I found too hard, eg I know how to change a tyre, but I can’t do it! They were always there to help with this. And helping me turn on the shower in many Hotels. Plus other things that I can’t remember.

My difficulties were starting to happen earlier, even some days at breakfast time, as there was a buildup factor starting to impact on my ability to think.

Also even at home, at night my brain is fatigued which can led to confusion and lack of ability to undertake simple cognitive tasks. But at home I can rest during the day but not on the Camino, with this regime.

I really don’t always want to talk about all of the problems that I experience, but given my advocacy about it and my awareness mission, for this Camino example, others didn’t see it or want to hear about it.

But I was struggling with so many aspects of daily management that I haven’t experienced before, and I wanted them to know to support me by not asking more than I could offer.

The lesson I have learned is that I need to get out there more and educate members of the community the sorts of things that can present major challenges for those people living with dementia. Or at least my Dementia because I’m the expert on that, not what they think it only means.

John’s post: new symptoms?

I’ve noticed on a few occasions in the last week, that I’m having some issues relating to what I would call visual perception.

There was a set of about 16 stairs at a Hotel in Saria, between the dining room and the bathrooms. The lighting was poor, but each 2nd step had a light of about 6 cms built into it, and there were other similar lights on the wall. The first time that Glenys used them, she asked me if I was having any difficulty, and I was.

I couldn’t tell where the colour of the stairs blended in with the walls and the flooring. I had to walk up and down these stairs very tentatively because my brain was having difficulty with distinguishing the stairs from the surrounding visual features.

In Sarria, Glenys couldn’t get a reservation in the same Hotel but she was just 50 metres away in a Pensión. Because I was struggling a bit we still spent all day together, usually in the quiet of her place, resting. But whenever I needed to go up these stairs to the bathroom, Glenys went with me from that moment.

I’m having similar problems here in Madrid. Once again it’s a dark stairwell, but some of these old buildings don’t have lifts, so I have no choice but to use them. We make sure that the lights are on, Glenys walks with me, I hold onto the rails and we go slowly.

Anyway, I’ve only just noticed and we don’t have any stairs at home, so I’m still trying to think what it might be. It’ll be something we both monitor.

I hope this experience is not the beginning of other visual perception problems. 

Madrid: statues and a bit of fun.

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The most impressive statue that we saw in in Museo Nacional Del Prado. Unfortunately, I didn’t think to take note of the sculptor because we stood there for ages looking at the intricate work and talking about it.

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1778, old.

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The statue in the Prado was Queen Isabel II when she was young. You could see her beauty, but the sculptor had carved her face under a very thin veil. On the veil was intricate lace work.

Queen Isabel, II

Queen Isabel, II

How he sculpted the layering with such detail of the face underneath all of it, is truly amazing and illustrates an unmatched talent.

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Christopher Columbus.

Christopher Columbus.

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On building facade.

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A bit of fun.

Madrid: art work.

Madrid is a city of art. Here are some images of street art, both professionally done and more ‘common’ street art.

The bigger picture. Quite a large building with many paintings.

The bigger picture. Quite a large building with many paintings.

Close up.

Close up.

Panelling.

Panelling, to frame the window.

Great talent

Great talent

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Corner of the building.

Above the shop.

Above the shop.

People watching

People watching

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Madrid: street signs.

We caught the train to Madrid. About a fortnight before we left Australia, the departure time was put back 4 hours!

I ensured that we both ate something healthy, but it was still before noon, because of the time to checkout of the Hotel and go to the train station. Lucky that I did this as there was nothing healthy at either the station or on the train (which only had tea, coffee, chips, chocolate etc.) Therefore, no lunch.

On arrival in Madrid. we caught a taxi to our apartment and quickly decided to just find something local and quick.

So with no map, and it being after 9.30 pm, we decided to just grab a burger close by, because it was easiest. These situations impact on John greatly. Probably me also.

John needs to mainly rest still, here in Madrid, but with a very dodgy front door key, and nothing closeby, we decided to slowly take our time, walking, looking, sometimes being with the others or meet up at a designated time and place. This allowed John to sit in a quite space, while they looked around.

So basically that was our Madrid.

Here are some photos of street signs.

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Close to ‘Home’

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On the footpath.