Offcar

Fedrico uses the Ruotino from Offcar. He has a ride-a-long platform so he can take someone with him.

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The bike is extreme light and compact. It goes from 0 to 22 in no time. Gras or sand is no problem at all.

 

Venice

When I announced the Ataxia Trip last winter to visit Europeans with FA Federico was the first to reply. “My house is your house”, he wrote. He and his brother Alexandro are real handbikers. I met them back in 2009 during a handbikerace in France.

If I wanted to make arrangements with Federico he usually answered short and most of the time not to the point.
Now I know that was due to his lack of English knowledge, but at the time I was having doubts if he really wanted me to visit him…I wanted to go with Koen and Niks but started to have doubts.. Thanks to the persuasiveness of Koen we booked the flight and found a campsite last minute. (We couldn’t sleep with the Italians because they didn’t have a garden for a tent).

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The trip went smoothly: Sander took us to the airport..good flight..took the bus to the campsite..
Around noon we were having a burger next to the pool. And that was the last time we ate something that tasteless. Not bad for 3 guys without their girlfriends, eh!? 😉
We slept in the Coco Sweet, a tent with beds and a stove in it. The guys had to pull me inside, without them I could go nowhere.

P1070075The campsite was huge: 5000 visitors, mostly families. We had to walk for 15 minutes from the entrance to our tent. The rules were also really strict: no noise after 10PM, no music during ‘siesta’, no this..no that..

The beach is difficult

The first day we took our time to explore the campsite, the nearby village and the surroundings. At night we went to a beachbar where Pablo was playing music. To get there we had to push the wheelchair 200 meters through the sand (doesn’t go really well with the wheelchair, as you may know..) or…

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Eventually we ended that day in a local discotheque.. That night my camera broke, just like every night that followed. 🙂

During our walk back we played a bit of music, not really that loud, but the managers of the campsite weren’t (of course) that happy with it.

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I don’t really sleep in, not while travelling. Around noon we were already in the sea and during the really hot hours of the day we cooled off in the pool on the campsite. At night we came back from the village and heared Pablo play music together with a friend who played the accordion. Really nice performance. Koenie brought his harmonica and was called to the front to play along.. He surprised everyone, nice! After the performance our new friend Pablo joined us and invited us for his next performance.

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We took the bus to the ferry and went to Venice to spend a really nice day with Federico.
Water and stairs, that’s it really. 🙂 Nils pulled me up the stairs and Koenie helped Federico. They first were doing games “I race you to the top!”.. but that was soon over due to the heat, I guess. The night was short, the hard labour in the heat had drained us all.

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Back on the ferry to Lido, to visit Federico and Alexandro at their place. We got there while they were taking a nap, so it took a while before we found eachother. After that we went for a drink.. Alexandro who just woke up, felt forwards.. His glass fell over, took Nils’ glass and it went over the balcony on someone’s head down on the street! Needless to say the people downstairs werent happy at all.. Fortunatly nobody was injured, but that could’ve ended differently.

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Back on the street I tried out the electric bike of Federico. From 0 to 22 km/hr in no time!

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The 2 kids of Alexandro were constantly helping, very nice to see. If they both wanted to ride with their dad, the youngest would sit on dad’s lap to give gas. Cara was standing behind Federico and was helping him to avoid bumps in the road (he vision isn’t that good).

There are only about 400 people living in their village, mainly elderly. I prefered their village over Venice itself! Cara cooked for us (she’s barely 14 years old).

The 2 brothers live next door to eachother and both have an adapted room with a lift to get into bed.

We really learned from eachother that day.

The sun went down when we wanted to go to a bar, but Nils and I just wanted to go near the water for a bit. What turned out to be a good idea..

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It was really late when we got back at the campsite. They still didn’t like music overthere, so we got a yellow card. We promised not to play music anymore.

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A relax-day: swimming, kite flying, shopping, cooking…

During our flight to Italy I told the guys about Ataxia being like a tortoise, slow but effective. We walk around in the village and we spot a shop that had all kinds of already wrapped gifts for sale for 1 euro. “I am not going to spend my money on that”, I said. But Nils insisted on buying me one and so he did. I open it and it is a tortoise(!!) on a necklace. How cool is that!?

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That night we talked about tattoos. I said that there should be a skull on mine, because everything started in 2006 with the “Dodentocht” (translated; deathjourney. It’s a 5 yearly event in Belgium where people walk 100 kilometers in one go..)
The guys thought that was tacky and that was it.
Later on a coverband was playing behind our campsite (yep, over the fence again! 🙂 )

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There was a vendingmachine with fake tattoos in it. They got one out and… of course it was one with a skull! The coincidences on this trip were actually a bit scary!

We got back at the campsite, as promised without any music, but we did have a large group of Dutch people with us. For the managers of the campsite this was the final straw and we were evicted. No more Coco Sweet. The next day we’d have to leave.

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The guys found a solution to spend our last night.. They got a spot on a nearby campsite and purchased a tent.
Since we couldn’t bring that much luggage with us on our way back, we couldn’t keep the tent. So we swapped it for 3 belts from an African guy. 🙂

After Fabio’s third performance we went to sleep, I had to rest for the ‘Fietsdodentocht’ (a bikeride of 100 kilometers with lots of climbs).

walker

Robert uses a walker that is ‘surrounding’ him, Very cool! Going downhill he lifts his feet 🙂

robert1The walker is called the “crocodile gait trainer” by a company called Sniug Seat. Here is a link to their website.

http://www.snugseat.com/products/walking/crocodile/c-23/c-72/p-165/?sku=48265

His mother explanes: “They have 3 sizes so anyone can use one, kids and adults. Robert uses the size 3.

It is heavy enough to help his balance and keeps him standing up tall and straight. That is good for his posture and back. It can fold up so it can be stored or loaded into a car or van. Robert has even travelled with it on planes and trains.

It has a seat, but we took it off for the school year because it got in the way of his backpack and he didn’t need it. We use Velcro hooks to hang bags and backpacks on it. When the brakes are one, it gives him something steady to hold onto.

He has been using it for over 2 years. He can go really fast, especially downhill. I think it has kept him walking longer than if we didn’t have it.”

FA Woodstock

Last year I launched a message to meet people with FA. I was going to see how fellow FA’rs were finding solutions for every day problems that our desease is causing. Then I’d make an English website so we could learn from eachother.
I was planning/hoping to make some trips & visits around Europe, until…I was asked to come and visit a ranch in the USA.
The owners, Paula & Tom, have 2 girls with FA, Carli & Katie. Each year they organise FA Woodstock, a relaxing weekend for people with FA and their family/friends/lovers..

Kyle Bryant, who serves as an example for me and my hero was going to be there, together with lots of other FA’rs and they have a swimmingpool and (most importantly!) a fishpond!

Reasons enough to empty my piggy bank once more and to travel to Chicago with Danielle.
Travelling is always tiresome, lots of organizing, solving things and make the best of what you got. But it sure is amazing to look back at the funny moments, the culture, the nature and all the unexpected changes afterwards…

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We left our house around 8am and more than 24 hours later (for us) we opened the door of our hotelroom in Michigan city. It felt like one week had passed in one day. Overthere it was midnight, 7 hours earlier than Belgium.
We got 2 queen size beds! But they were far from clean… Blood and other stains on the sheets. Far from clean but we were too tired to care at that time.

 


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0002(First thing to do: clean sheets!)
After a short but good sleep our (borrowed (thank you, Marc!)) GPS in our rental car brought us to the Hook family. It was raining on the way there! So we arrived in shorts and in the rain.. 🙂
When we were saying our hello’s to everyone, they seemed impressed that we came from soooooooo far. 🙂

 



02They asked each of us to make a painting, so they could auction it off afterwards. The total amount of that auction will be used to cure FA). Normally I’d never do this, because my hands are shaking at times and I don’t color between the lines…Now I wanted to do it and that is typical about this weekend; everyone can be herself/himself without being looked at in a funny way.
At the drawing table I saw Kyle for the first time, a very normal guy! 😉

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There was also a stand where you could tie-dye your FA Woodstock shirt, that was really nice to do.
After that we drove with a tractor to the fishpond.
The day finished with a group photo and fireworks (in the pooring rain!)


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Breakfast at the Hook’s!
11Francois was sitting at our table that morning, a 47 year “old” Frenchman. 47! And he was still very well. Just like me he had a manual wheelchair. A really great guy, filled with humor…another example.

 

 

 

I now get why some Americans are overweight.. The food is good, but ooooh so fat/greasy!
Fried chicken, pancakes for breakfast, chips as part of your dinner, icecream, muffins, bacon..

We went to see dr. Lynch at the ranch. He and his team are working nonstop to find a cure for FA. He took blood and saliva samples for testing. For him this too is a perfect event, so many patients at one place.

10aAfterwards we went to do some pottery and when it got really hot around lunchtime we jumped in the pool and enjoyed a really nice cocktail (or 2…3..)

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Wijit

10Since a long time, I’m not really bothered anymore with the fact that I can’t ride fast with my wheelchair. Everyone with FA suffers from that. That is why some had an electric wheelchair or a scooter. One had the e-motion (electric driven wheels) and Donovan had the Wijit.
I tried the Wijit (of course 🙂 ) and it worked! When we joined the group again Brian from Canada told me that he also had used the Wijit but stopped using it. So he told me that he would send it to me and I only had to pay the shipping costs! Awesome!

Still enjoying the good news Francois challanged me to arm-wrestle with him. I agreed and we moved our wheelchairs facing eachother… I started and there was no movement in his arm! “You can start now”, he said jokingly. I did see he was having trouble aswell. Then he went for the attack, but I could stop him too. To make a long story short; after 10 minutes, I had ‘m!

During fishing that day, I arranged with some guys to place a fishing-line over the fishpond, hoping to catch a catfish. In the pooring rain we caught some little fish to use as bait. After an hour or two (with 5 persons), the line was fully “loaded” and across the pond.. Exciting! Then we had to wait for the next day..

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11aFA Woodstock was slowing coming to an end. We all had breakfast and took our time to say goodbye. I purchased a book from Jude called “The view from down here”. He is a writer and writes poems about living with FA in this book.. and living in a wheelchair.

 



No catfish.. Bummer!

19In the afternoon we went to a fish store, like almost everything in America this store was huge! 2 floors, a waterfall with salmon inside the store, electric scooters and… GoPro’s! 100 euro cheaper than in Belgium. So I figured “what the heck” and purchased one. Payed with VISA, so the pain in my wallet will be a month later. 🙂

Breath-taking

12Later that day…Our first visit to the beach was cut off due to incoming thunderstorms and supposedly tornado’s(?!).

I was already in the car when Danielle decided to make a quick stop at the restroom. She locked the doors of the car and because of the heat outside, the oxygen in the car was soon dropped to a minimum..
So when I wanted to open the door, this didn’t work. Unlocking the door didn’t work either! I tried to think and not to move as much, so I wouldn’t waste too much oxygen. I started to sweat a lot.. the car horn didn’t work either! And I was just about to break a window when Danielle got back.Fortunatly!

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13Ride day! Everyone who was there was in some way or the other “attached” to ataxia, an awesome event. We arrived around 8am. I rented a handbike and Danielle was riding on a bike we borrowed from Deauke and Renaat (a great Belgian couple who are living in LaPorte, IN.)

My handbike was a Top End, in good shape, apart from the smallest gear that didn’t work. I couldn’t really strap myself in, but that didn’t seem necessary (at first..).

 

 

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We left when the sun was already pretty hot, on asphalt. A mile later this turned into a gravel road with ditches and vicious climbs (mainly bridges). That made me lean more and more to one side.. 🙁
During the ride someone infront of me just made a panic stop, I swerve to the side and someone else who was also got out of the way hit my arm… No damage, thank God! 🙂


15During our lunchbreak, Doug (an awesome guy who helped me during fishing a lot) made me a seatbelt out of ducktape. It only worked for a little bit..
When Danielle and I got near the finishline, we met up with Kyle and David. So the last mile we were riding with them and that was really nice, we crossed the finishline together while lots of people were giving us a huge applause. 🙂

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On with the food! The people from OUTBACK Steakhouse organised a bbq. (really good food!) and there were speeches from doctors, sponsors and Kyle. I also met a friendly 62(!!) year old lady with FA. 🙂


18After the group photo’s we went back to our table to finish our drinks.. the tables were gone! Around 2pm we were back in the car to drive “home”. Weird! In Belgium such an event would last longer than this..
When we got back to the hotel we took a nap and relaxed the rest of the day.

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22aFrom this day on, our own vacation started.. So we thought.. during the days at FA Woodstock we met so many nice people.. that night we ended up at a restaurant with a few of them! A nice gathering, but again; dinner, coffee, the check and going home. According to Deauke this is quite normal in America. We agreed to go fishing on a pontoon boat at ‘Pine Lake’ the following day.


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23Arriving at the lake, I was a bit sceptic; large, windy, no fish to be seen..and the guy we rented a boat from said; “I don’t think you’re going to catch anything”.
Nice to hear, thank you. 🙂
After two hours of jigging (move up and down with a fake little fish) I felt a bite! The biggest bass I ever saw! I was super happy.
That night we had dinner with Deauke and Renaat. They invited us to their place to ride their huge lawnmower.


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I thought a smartphone wasn’t something for me, with my bad coordination that wouldn’t work out. At FA Woodstock everyone had a smartphone, so I kept on trying on Danielle’s tablet. I got the hang of it pretty quickly.
At Deauke’s place it was really nice, she told us the differences between Belgium and Chicago/Michigan/America in general. After that she showed me how to ride the lawnmower. 🙂
We said our last goodbye and finally went on our way to Chicago!


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Sleeping is often painful, my legs and neck are often hurting. Last night it was hell, I never slept longer than half an hour!24a
That day we went into Chicago and were typical tourists. 🙂

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Carli (Hook) from FA Woodstock came to town to have lunch with us and her kids. She had to drive quite far, but you are worth it, she said.. So sweet!
Around 3pm we were at Wrigley Field to watch the Cubs play the Phillies. What an event; thousands of people, the atmosphere. A lady next to us explained during the game what the rules were. All in all a great afternoon. Too bad the Cubs lost with 5-3.


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27aLast day! We had a lunchdate with Leentje and Michael, two people from Sint Amands (my hometown) who are living and working in Chicago. They took us to a Greek restaurant and a pub with its own brewery.

Afterwards our long way home started. It was good to have Jude’s book, there are a few masterpieces in it! I’d like to recap some of it in my own words; ataxia is like a tortoise, slow but effective. If people ask about the future, you think: we’ll look at it one day at a time.. Maybe there will be a strong wind that turns the tortoise on its back (a tortoise dies if he lays on its back).


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Back home and my laptop died, dammit!

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I am writing this with a jetlag (and a new laptop!). Again, I want to thank everyone who made it possible that I could donate 1.000 euro for a research to cure FA. I thought I had 800 dollars, but during the ride Ataxia someone congratulated me with my high amount, more than 1.000 dollars. Back home I checked and realised that Rotorexpert (that’s my friend Jasper) had donated 250 dollars! Thanks mate!

btw: here are the results

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Elske

4 jully, Elske organised a barbecue with FA people in Belgium. After dinner, I went inside to take a look in her house.

In the livingroom, a pole helps for the transfers in and out the couch. I tried it, and it worked (even after a few beers 🙂 )

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The house has a second floor. A lift takes her to the bedroom and the bathroom

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To take a bath, she sits on the blue thing. It goes up and down

 

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barbecue

Elske organised a barbecue with people from the FA group in Belgium, a nice evening!

Two times a year, we have a meeting in the afternoon, but our time together is always limited. That is why she organsed a day without the parents so we could have a good chat.

 

 

 

Nick

Nick, is 23. He loves fitness and fishing. He also swims and handcycles. We followed him one day, and had a blast. His house is not adapted, he has to walk up the stairs to go to bed or take a bath.
Nils pushed me to the fitness with his longboard, and Nick used a handbike

A sauna after training is never a bad idea 🙂


After his training, he uses this, NO SPASMES AT AL.

 

Nick, his mother, stepfather and the dogs.

 

After 3 days of meeting cool people, we went home. Next activity with Ataxiatrip is a bbq  the 4th of July…

Guy

Guy is the one with FA I know best. He has the same interests as me: handbike and nature (he loves diving). He now is 40 and has a baclofen pump. He is physically in a good condition; when I am 40, I would love to be like him. Every morning, he exercises.

He has an electric chair (Revilax) that he uses to watch tv. It makes transfers easy!


He also has a standup wheelchair (electric), comes in handy in the kitchen or when talking to people, as you are on the same level.


He uses his handbike every day! Mainly indoor.


His toilet is situated close to the bedroom and is perfectly adapted. All the doors are electric.

The shower is right next to the toilet. Guy uses slippers to shower.


In the room, an extra mattress prevents him from having pains during the night (geltex).


The weather was just perfect, so we went for a handbike ride…
… and ice cream

Guy never drinks alcohol! Next one is fitness boy, Nick

Thijs

Last week, Nils (my personal assistant) and I decided to visit a few Belgian people with FA. We took my car and loaded up the (electric) handbike.

I met Thijs ten years ago during a check up in the hospital. He is 32 now. FA was diagnosed when he was 15.
He spends most of his time at home (home sweet home, he says), where he loves to watch series and listen to music. He works in his old school as a volunteer webdesigner.

Sometimes he falls during a transfer. He demonstrated one, and that looked dangerous indeed 🙂

He has a standing table that he uses every day.

His shower and toilet are tiny.

He uses slippers in the shower to protect his feet.

Riding his handbike, he puts something soft between the legs to keep them in position. His feet are fixated.

His handbike is electric too. The best money ever spent!, he quotes.

We went to a bar. Thijs had a difficult time to keep up with the conversation due to all the noise in the background.

 
He never drinks alcohol or coffee.
He lives with his mam, she is the best. And a good cook too!
His wheelchair has a pre-formed back and a cushion that helps your back stay in a good position. (I used and loved it.)

We slept in the livingroom and left after dinner to visit Guy.