Progressive and eventually debilitating, Alzheimer’s disease is devastating. Just ask anyone who knows or loves someone with the disease. Sadly, that includes many of us.
PRA’s Dom Moloney lost his grandfather, Arthur, to the disease. And his wife lost her great aunt Milly who was “like a mother to her” when she was younger.
So, from July 12 – 16, Dom and more than 100 of his colleages from 15 different countries met to ride in the PRA Cares: Vienna to Prague event to benefit the Alzheimer’s Association.
This story was originally published on the Alzheimer’s Association’s website.
Read Dom’s personal story about his experience with Alzheimer’s below, and then see the story and photos from his cycling adventure here.
Can you tell us about the people you lost to Alzheimer’s?
My grandfather, Arthur, died of vascular dementia and my wife’s great aunt Milly died of Alzheimer’s a couple of years ago. Arthur was a strong influence on me from a young age. He was a very spiritual man and had a brilliant sense of humour. He was there at many of the important moments in my life, including being my sponsor at confirmation. I have many happy memories of playing as a child at his house; holidaying together; and, after his wife died, helping him in his garden. My favourite memory was the first time he met my then girlfriend (now wife) but without looking up, assumed it was my sister. His first greeting to her was, “Hello O pregnant one…” Obviously everyone fell about laughing whilst my very slim girlfriend looked around for my very pregnant sister!
Milly looked after my wife and taught her many life skills. Milly was very mischievous and always had a cheeky glint in her eye. She was always a little batty and often played for attention by pretending to forget things. This made it all the harder when the Alzheimer’s started to kick in as we never knew when she was playing around and when she really couldn’t remember where the bathroom was in her one bed flat!
What do you think is the most difficult aspect of the disease?
There are many things that make Alzheimer’s difficult. The fact that someone you love not only doesn’t recognize you but sometimes thinks you’re coming to do them harm – or mistakes you for someone they used to love. One time, my grandfather saw my mother and her brother and asked where Margaret was. Margaret was his first wife who had died a decade or more earlier. When they broke it gently to him, he was distraught. It was only after several minutes they realized he meant my mother and just got the name wrong and hadn’t recognized her.
Physically, Alzheimer’s destroys people. Milly was never a small woman and must have been 15 or 16 stone when she first went to the hospital. By the end, she had literally shrivelled to a 5 stone shell with paper thin skin covering her bones. She ‘drank’ water from a toothbrush as she was too weak to use a cup.
What helped you and your family during this difficult time?
We are very fortunate to have two sons of our own who were quite young at the time Milly was in hospital. They would often come to visit with us and the patients would all coo over these beautiful children. Seeing the light that a little bit of youth brought to their day – or just someone to talk to, really cheered them up which in turn helped us. Ultimately, we relied on each other as a family to get through the tough time.
What advice would you give someone who might first be learning that a loved one has been diagnosed with the disease?
Be patient and loving. Alzheimer’s confuses the patient and frustrates them enormously. Simply sitting with them and holding their hand is often enough for them. And use the periods of clarity – even when quite far gone, you may get short bursts of clarity where you’re recognized or a shared memory resurfaces. Grab these times and enjoy the moment. Be kind, be loving and cherish every moment. And when at last they pass on, rejoice that they are no longer in distress.
Are you hopeful that we will find a cure?
Alzheimer’s is a horrific disease and I have to believe we will one day find a cure. I never wish to see anyone suffer as Milly did – or her family and friends.
Knowing your personal connection to the disease and the fact that PRA Cares: Vienna to Prague benefits the Alzheimer’s Association how does this cycle event take on added significance for you?
Whilst I always loved cycling as a child, I’d not done it for 25 years until last year when my sister wanted to do a crazy challenge raising money for MS charities. We ended up cycling up the Col du Galibier (a French Alp on the Tour de France route), raising £2500 in the process. I loved being on the bike, out in nature and raising money for a good cause, so when the opportunity came up to cycle with PRA to raise money for a cause that is close to my heart, then I had to do it.
Vienna to Prague: Cycling for Alzheimer’s
On 13 Jul, Tracy Baldwin and Dom left London to join 103 other PRA colleagues from around the world for the 3rd PRA Cares cycle ride, which this year took place over 330km between Vienna and Prague. Here’s his adventure in his own words.
Our first introduction to a fellow rider was when the plane landed in Vienna. A fellow passenger spotted Tracy’s helmet and introduced herself. Pulling an Ironman Triathlon bag out of the overhead bin did nothing to allay our fears that we might be in a little too deep! Whilst Tracy is reasonably fit, she hadn’t been cycling long and for my part, I cycled a lot – 25 years ago! – but only one real ride since…
That said, Stephanie and the other 10 or so riders we met at the airport, whilst seeming more prepared and fitter than us, were very easy companions and accepted us very quickly.
Adventure Café, who were facilitating our ride, briefed us on what to expect over the next three days and we were presented with our shirts – a nice, understated, bright pink!
Day One: The first 80km [Vienna (AT) – Znjomo (CZ)]
The morning brought a good, hearty breakfast (we’d need the carbs, right?) followed by a final check of the bikes and safety briefing – then a sea of pink took off at shortly before 10AM on our first 80km.
Tracy and I (with my Jedi mascot YoBe) elected to ride together with some friends we’d made the previous evening in the last group of about 20 riders. This included our DJ for the weekend, Tiberiu from Romania, who set us off to the strains of ‘Let me entertain you’ by Robbie Williams!
The first 10km or so was ridden on a cycle path along the banks of the Danube which afforded some beautiful views.
The pace was kept deliberately easy so we could get used to riding in a group, warm our muscles up slowly and keep in touch with the group in front. Austria is very much a cycle-friendly land, with beautiful roads (even when they go uphill) and made for the perfect landscape to get to know the riders around us.
We crossed the border into the Czech Republic in the early afternoon which brought a huge sense of achievement (and the obligatory selfies…). The change in scenery was as striking as it was abrupt. Gone were the super smooth, empty roads and fields of sunflowers and wheat of Austria, to be replaced with less well-kept roads, more life and a sense of Soviet-influenced history in the architecture. Cheers and waves from trampolining children brought smiles to our faces and soon we were approaching our end point for the day.
Day Two: The next 130km (Znojmo – Tábor)
Day 2 of riding brought a much chillier and wetter start than day 1. Yesterday’s 80km had been my longest ever ride and today we had over 50% further to go and a much hillier day. We also started into a rainy headwind where yesterday had been perfect sunshine.
That said, morale was still pretty high (especially when we found usable toilets!). Had we realized quite how many hills were coming, we may have tailored our enthusiasm somewhat…. Our next stop was at the 50km mark for lunch where a seemingly unlimited buffet of fruit, fries and sandwiches awaited us.
Tracy and I had been slowly climbing the groups since day 1 and decided to push our pace a little further for the next leg as we had been given a limit of 7.30PM to finish the day. Having done 50km already, we were keen to do the next 50km to the next stop, where we would only have 25km more to go.
That 50km, through hail, rain and up seemingly interminable hills was not nearly as much fun as day 1. Especially when my front derailleur broke and I was stuck in my lower 6 gears! Amusingly, this stretch also brought my first puncture of the day whilst on a fast downhill section. Fortunately, that was the extent of bicycle maintenance for the trip and we made it to the 110 km mark without further incident.
A short stop for carbs and fresh water and we started our final 25km into Tábor.
The cheers as we rode into the hotel at Tábor made us feel like we’d just finished a stage of the Tour de France! This is the support and encouragement that really made the trip so enjoyable – that and the waiting cool beers of course! 136km (the longest ride for Tracy or me) and through grotty, hilly conditions, finishing in the early evening sun (about 5.50PM, so we beat the 7.30 deadline) really brought a sense of achievement. Knowing that we only had one more stage and that it was going to be much less hilly than today made us feel great!
Day Three: The final leg – 105km (Tábor – Prague)
Sunday began with a good breakfast, the sun was shining, and the mood leaving the hotel was very positive. Surely 105km was nothing compared to yesterday? Only 2 or 3 hills and nothing like we’d gone through already – right?
We hit the first hill within about 5km of leaving the hotel and it went on for too long! 2 days and >200km of cycling had brought some sore areas and a long hill was not what we were expecting! After perhaps 45 mins, we started climbing another hill and only when we started seeing signs to a chairlift did we realize we were cycling *up* a ski slope!
This is where the encouragement from those around us really made the difference. Fortunately, what goes up must come down and, despite the road surface being absolutely dire (not fun when approaching a sharp bend at >40mph with a Czech driver coming the other way) it was good to feel the wind in our hair again.
45km in and we felt we’d conquered the worst of the ride – until we were told there was one more hill. Couldn’t be that bad though –right?
This hill turned out to arrive from approximately 32km out to approximately 25km out from Prague and seemed to go on forever. I’d been cycling on my own for a bit (not a natural up-hill cyclist!) when I gained a fellow rider behind me. We took it slow and steady (about 5mph!) uttering encouragement and cursing the hill at every bend. The last straw came when we turned a hairpin bend for the road to turn into cobblestones! This brought some colourful expressions from Mark behind me but we kept going and were soon rewarded by the sight of our flags and huge cheers from our fellow riders who’d already climbed this monster! Just a few minutes later Tracy and another group of cyclists arrived to more cheers. Needless to say, we had a bit of a rest for a short while whilst we hydrated and carb’d up!
The last 25km into Prague were relatively uneventful, though we did re-group in order to ride the last 5-10km together alongside the river, avoiding trams to a group photo on the famous Charles Bridge.
This was followed by getting lost walking through Prague’s cobbled streets in cycling shoes (not easy at the best of times!) and taking in the sights whilst looking for our hotel (should never have taken an hour!!)
Dinner was a traditional Czech affair with beer and local liqueurs flowing; Oom-pah band playing; Goulash, dumplings and strudel, followed by awards and medals.