With an Introduction by Eleonora Passeri and life stories by Iain McGeachin, Rachel Quesnel Shilletto, Benita Penfold, Polly Moyer, Rita Francisco, Sandra Brasil, Carlota Pascoal, and Dorinda Silva.
Introduction by Eleonora Passeri and edited by Amanda Rackerby
There are journeys of all kinds. Some journeys take you from one part of the world to another, and others take you on a journey from one point of knowledge and empathy, to another very different place of the mind and heart. Since this is an article on travel, in this introduction, I would like to tell you about what I have learned from my journey from a neuroscientist researcher to parent and patient advocate of Rare Diseases.
When I stared my journey on writing articles with my friends with Rare Special Powers, I expected it to be a very different process compared to my usual procedure for writing scientific papers, however, collecting different opinions or perspectives from patients and the mothers of patients requires similar “guidelines” to those used for pulling together graphs and tables. For example, I see a strong similarity or a parallel to the cells I had seen in a microscope as a researcher to the art I use in these Rare Special Powers articles. Thus, the skills I used as a researcher are still very much present and alive in my writing and information gathering. But, the vast difference comes when I read these parent’s and patients article “abstracts.” It is here that I get a glimpse of the high-stake feelings and emotions. These are articles written from the heart rather than the mind. I have found this writing experience profoundly more difficult because for the first time in my career I now have been able to grasp this rare group’s sufferance. I have gone behind the disease and I have found the person. This is what travel is all about, right? Discovery.
With summer here in our hemisphere, our mind often goes to the idea of the “vacation.” We look forward to a gateway, after all, we deserve a vacation after an entire year of hard work. Our vacation might have been planned for months and now just few more weeks and we will be on a beach or on top of mountain or hanging around a historical city. But what about these rare patients and their families? How do they deal with vacations? Today’s Rare Special Power’s article discloses how these rare people deal with travel and vacations and also provides some suggestions from their past experiences.
This article is not just for these Rare families to feel connected and maybe for a moment not so alone on their path, but it is also for all the rest of us that don’t suffer every day from a rare disease that we may learn a little about this group of people so we can extend our empathy so we all can be a little more understanding and form a connection with those that often have a quiet and insular presence in this world because the world has not adapted. So take a moment from your day to go on a trip with us as we discover what travel is like with a Rare Disease and why these rare individuals decide to take on the challenge of travel. Bon Voyage! Buon Viaggio!
Our family is always up for adventures from day tripping, overnight stays or flying when we are lucky enough to have a trip paid. We invite you to come along with us on an adventure when your child is in a manual wheelchair.
Adventure 1: Visiting Family. How do we manage all those stairs with a 110lbs child? We are lucky enough that our daughter has some strength in her legs so we can physically support her as she pushes herself upward…Safety issues - definitely but the alternative is to stay home and never see anyone and this only works if the stairs are not too steps and not too many. Alternatively, she can do the bum scoot up the stairs but at 12, this is very embarrassing. Or even worse, is picking her up wheelchair and all and carrying her up the stairs, the issues is that you need to remember the brake so the chair doesn't tip and that is big security risk. Too many ways to injure someone.
Need a pee break? Do you know that most bathroom door won't accommodate a wheelchair. Powder rooms are the easiest to manage since the doorway is close to the toilet but some are a real juggling act because seriously who wants to crawl in a bathroom!
Adventure 2: Visiting a new restaurant. Does the table have a ledge under? Then the wheelchair won't fit underneath it, so she's eating on her lap.. How embarrassing! No straw? clear liquid such as water and juice makes my daughter cough and she has tremors - not drink friendly. Straws are our friends. I should be organized enough to always have some in my purse but the reality is that I'm not.
Need a pee break? Sometimes we are lucky and the only issue is that there are no automatic door openers. But there are places that the handicap stalls door opens inward - yes, folks, inwards so how do you close that once the chair is inside. You don't. Do you want a face wash? Well, you may get one anyways because the water hits the sink and the faucet is at face level so free face-wash! I carry hand-sanitizer for this!
Adventure 3: Overnight stay in a hotel. We've ask all the accessibility question for our daughter's need that we can think and we are set. Wrong! What is with these beds that are 3 feet off the ground? She can't transfer from her wheelchair to the bed. The toilet is accessible but there's a tub in the bathroom. Well, that's potential for someone to get hurt. I guess it's a sink/face cloth bath/wipe for us. Space? The room is so crowded with furniture that the wheelchair won't fit to get to the second bed. Well, I guess that's means she's not sleeping in that one. Let's not even talk about nighttime incontinence and getting fresh bedding! Even when you ask for extra bedding. We all know that incontinence underwear is not leak proof.
Oh, there's a pool (!), but there's no lift. Don't try getting someone that's wet out of a pool: It's a real recipe for disaster.
Adventure 4: Overnight stay in a hotel & theme park. See room potential issues above. We are told that this is the place for children with accessibility issues. It's water theme but there's no water wheelchair available. Less than 1/2 of the park is accessible to her wheelchair. Disappointing. This piece was made worst because it was gifted to us and we wanted to enjoy it to the maximum but by the evening we were all ready to pack it in.
Adventure 5: Traveling plans for school trips. I'll admit it. I am not big on school trips, I try to avoid them as much as I can but for some reason, the school is always calling at the last second if the trip is too far with busing issues! So you need to pull up all your cards in finding the proper transport for your child.
Adventure 6: Air flight. Our daughter qualified for wish grant and we decided to go to Disney World. While the park is accessible and she was lavished with attention wherever she went. The rooms came with the same issues as in adventure 3. The biggest struggle was the flight. It was a three hour flight and we tried limiting the drinking but she needed to go. You never realized how small the bathroom is until you need to fit two of you in there and change her clothing as well. Our travel agency book us halfway into the plane and not at the front of the plane where it where it would be close to get to the bathroom. Supporting your child to the bathroom in the narrow aisle is another struggle as well.
Adventure 6: Beach Day. Ever been on sand with your bike it's quite a work out! Some of the bigger beach have sand wheelchair, which are super nice to have. This is the only place where crawling is necessary so we usually get as close as we can to the water so the crawling is minimal and it doesn't look like much to anyone looking on.
Adventure 7: Hiking. So we've scouted the trail out, it's wide path and listed as accessible. But guess what, it rained the night before. So you are pushing a wheelchair in the mud, it's dirty work and your arms will be sore the next day. They didn't warn you that there's some really steep hills. So you are pushing and/or pulling the chair up and down these hills!
Adventure 8: Walk around the block in winter. We are lucky to live in a country will a 4 season. Winter is quite a challenge for us with the snow, sometimes, you only make it to the corner because you pack it in and go home because the chair keeps getting stuck.
These are only the challenges but we make incredible memories and we can recount stories about our adventures. We are always looking for adventures and see what we will discover.
Photographic Blog: https://ardierphotography.wordpress.com/
The Arden Effect - A ANE Warrior's Journey:
Visit ANE International : www.aneinternational.org
Should I stay, or should I go? - Travelling experiences by the CDG Communit
Find the full article HERE
We love traveling - and we love taking our daughter Tessa with us on suitable trips. But the planning, stress and anxiety in preparing for a trip, especially oversees travel, dampens and overshadows the pre-holiday excitement we should be having. This is because Tessa has quite complex medical needs. Tessa has 22q11.2 Deletion Syndrome, which brings on many challenges, and on top of that she is Type 1 Diabetic -which means she is totally insulin dependent-.
If you had to ask me what my biggest stress is around international travel with Tessa is –it would definitely be the preparation before the trip. We can’t do spur of the moment…we plan ahead. We tell Tessa months in advance where we will be going and what to expect. She and her teacher will then research our destination from the geography, climate and culture to what we can eat! We rehearse the airport routine: how we going to get to the airport, checking-in, saying good-bye to our luggage -which will meet us on the other side-, what to expect at security, what we will do when the security X-ray alarms and what we do and how we behave in front of an immigration official -especially leaving South Africa with a minor child I have a folio of documents-.
eing an A-type and slightly, a lot, of a control freak mom…I can really get stressed before travel. I think of every eventuality…e.g. our luggage not making the plane (has happened), the flight being delayed overnight (has happened twice in a foreign oversees city and not having access to luggage), the plane crash lands in the Alps and we have to survive for days before we are rescued (definitely not happened to us but I sure have seen all the movies) and so I can go on and on. So what do I do…well, the non life threatening meds, I will carry at least two days of meds with me, but insulin and syringes –I will have at least 2 weeks supply on me. Then because Tessa is on the insulin pump and wears a constant blood glucose monitor scanner, I will have spares on me and more spares in our check-in luggage. I carry a spare set of clothes for her, plus some comforts, i.e. a favorite book or two, wet wipes, tissues, medication for in case (runny tummy, nausea, antibiotic, nose spray etc., etc.). Yes I know all major airports have fantastic pharmacies – but when my child needs something I don’t want to still run around looking for something where I do not speak the local language. Oh and don’t forget all the travel letters from doctors stating why I need to carry the syringes and medications and exercise equipment (for her scoliosis). When we arrive at our destination, the first thing we do is unpack. Whether it’s for 1 night or 10 nights. The comfort of seeing her things organized helps Tessa to adapt and cope in a strange environment. And we immediately fall into a manageable travel routine. We plan our days… some time for touristy or sightseeing stuff, but also time for downtime.
We can’t do late nights and noisy places, so we are very selective of what we do and where we go. So you may ask, but is it worth it to then travel… and for all of us the answer is absolutely yes!
‘I’m hoping to go hiking on Sunday, along the Logan River. But it’s an hour in the car to get there and … well, you know the score’. This was in a message from my dear friend, Mike, a keen hiker who was planning to become a fitness instructor before he developed Mal de Debarquement Syndrome (MdDS).
In the same week that I read this there were several posts in the groups from people who were planning to travel but finding it difficult to get the recommended medications and/or were concerned about the possible impact on symptom levels. Travelling with MdDS presents challenges, which are specific to this rare condition. Because many of us develop symptoms after travel but then go into remission, the thought of re-triggering a new episode is a big concern. The researchers have mostly focused on travel of a duration of two hours or more (https://doi.org/10.3389/fneur.2018.00261) but for some of us, shorter trips can push us out of remission. Likewise, if we are in episode, the concern is that any travel could make symptoms worse. Each of us has to do a risk/benefit analysis, the upside being that many of us feel better when re-exposed to passive motion. The downside being the risk of symptoms returning or becoming more severe, especially if any trip disrupts our sleep patterns.
Traveling long distances for treatment, such as the opto-kinetic stimulation protocol, can become MdDS dilemma 101. But even travelling short distances, like commuting to work, can be problematic. People with MdDS may also become hyper-reactive to lights, movement, noise and other environmental stimuli. In this way, MdDS is not rare since these reactions seem common for people with migraine, autism, epilepsy and other neurological/genetic conditions. Spatial navigation can also be a challenge for people with MdDS so arranging travel assistance is my top recommendation, simply to enable people to find the right platform or departure gate. Sadly, Mike was unable to even risk the trip for his hike, having injured his foot whilst caring for his wife.
I am fortunate because there are many lovely places to walk near my home. But I do miss being able to take the bus into town without getting worse symptoms. And I miss being able to fly.
I've always travelled. Ever since my first "inter-railing" trip around Europe over thirty years ago, travel has been something of an obsession for me. For me though, the most important aspect of travel is of meeting people. I learn something from meeting them, and, hopefully, they learn something from meeting me.
These are mostly just regular people going about their daily lives. Museums and art galleries don't do it for me, and I get bored to tears just lying on a beach for hours -time is so much more important- but people, and their experience of Life? That fascinates me. Over the years, I have found that one of the best ways of meeting local people is by making a local train journey. This is why I have always tried to include a local/national rail journey in each of my previous travels.
It was the idea of combining all of these smaller train journeys into one huge train journey, which had been so personally rewarding and would take me around the world. This was the idea for my 2013 "round-the-world by train" journey. During this 2013 journey when I was in Siberia I had to abandon this trip. I had started falling over for no obvious reason, which of course concerned me greatly. I returned to Scotland so that medical professionals could discover the cause of my, evidently, progressing balance problem. After seventeen months of medical tests, I was diagnosed with a condition that I had never heard of: Spinocerebellar ataxia. On being given the diagnosis, for an incurable progressive condition, which would eventually see me in a wheelchair, my first thought was: "Very soon, I won't be able to do the one thing that I love the most--travel".
I decided, there and then, that I had to make the best use of my remaining abilities while I still had that option. The ability to walk would soon be lost to me completely therefore, walking became very important. Ataxia was a new word for me, so I did a bit of research to find out more. I also wanted to know what to expect in the future. It was during this research that I discovered that the medical research into a cure for this condition relied totally on charitable donations. I also learned that ataxia also affected children/young people, people who would never have the chance to see what I have been lucky enough to see throughout my life, or to do the things that I have been so lucky enough to do. Therefore, I realized that raising awareness of ataxia was of critical importance. Very few people, myself included, had even heard of it. I decided I wanted to do my bit towards raising funds and awareness towards ataxia, so I combined these two interests: my ataxia research and my love of travel. I got my walking boots on and started walking. To broaden the media coverage on my awareness effort I decided to wear a kilt while walking. It seems that everybody loves a kilt!
During a recent walk in Barcelona, Spain, I became aware of two people who have not only become an inspiration to me, but they also bring me hope. I had the pleasure of meeting one of these people, Alan Thomas whom also has ataxia. Alan was diagnosed many years before me, so meeting him was like looking into a window of my very own future. To be honest, the future has its unpleasant challenges, but at least I know what's coming. Alan is already in a wheelchair, thus travel of any kind is difficult. His ataxia has also severely affected his ability to talk. Yet, Alan travels around the world, TALKING at medical conferences as a patient representative. As a patient with a rare disease, the relationship between doctor and patient in medical research and treatment is very important and Alan’s efforts on this front make him even more inspiring. I consider it a huge personal privilege and honor to have met him. Alan and I share many of the same qualities. Alan is Welsh, and therefore a fellow Celt, and his compassion, and desire to share and communicate his knowledge, comes as no surprise.
The second person, who I heard about on my travels in Spain, is a young lad from Barcelona called Albert Casals. I unfortunately did not have the opportunity to meet Albert but his story is also is an inspiration to me. Albert, who will be in his early twenties now, has been using a wheelchair since he was just a child. His wheelchair has not stopped him from travelling, and he travels in a way that is inspiring. He hitchhikes around the world in his wheelchair, meeting people, talking and getting to know the people he meets!
Travelling with a disability is not about travelling to the places which have the most-accessible facilities, although I do love it when they are accessible to all, for me travel is all about inclusion. Not by having different facilities for people of different abilities. I would love to see facilities, which were accessible to all people whether they had a disability or not. In an ideal world, this would be so. But we don't live in an ideal world. The realist in me realizes that if I want to experience as much as possible in this life (and I do), then I have to accept the reality of what is around me.
By promoting the best practices that I find on my travels (https://www.facebook.com/museuarqueologicodocarmo/?fref=gc&dti=2068791236683633&hc_location=ufi), I hope to encourage other businesses/facilities to follow. By only travelling to the most-accessible places, I would be limiting the scope of the places I could visit anyway. There are enough physical limits on what is accessible to me, without me adding my own limits too. Even before ataxia, travel for me was more rewarding when it was less accessible.
Whenever I have gone to places where few other travelers have gone before, the people I have encountered have been so much happier to spend time with me. And we have all learned so much. Few things of value come easily. I don't see travelling with a wheelchair as any different, the obstacles are just harder to overcome. In a way, having to use a wheelchair is actually a positive in this situation: I won't have to look so hard to find a place where wheelchair-travelers are not a common sight, plus, I have so much more knowledge to share now. So that's my future. The past though? And the present? When I was "walking", I knew that my long-distance walking days would eventually come to an end, and they now have. Even before my last walk, at “Winter Wonderwheels” in December 2017, I already knew that it was probably going to be my "final" walk. I had been invited by the organizers to take part in their "celebrity relay" though (alongside Jonnie Peacock, Adam Hills and a whole host of CBE/MBE-awarded Paralympian champions and Invictus Games heroes - basically, "the great and the good" of the UK disability field at the time). My "walking" days ended on the highest of high notes. Now though, the wheelchair has become a reality. Thus, although my "walking" days are now over, my fundraising and awareness-raising efforts are far from over and traveling will still play a large part in this plan! As my kilt has been so successful in raising awareness in the past, it will be a kilt-wearing guy in a wheelchair who stops to chat about ataxia, with anyone who is interested on my future travels. Therefore what I have learned is that travel, in any form, comes with difficulties. The obstacles for me are now just bigger, however not insurmountable. Where there's a will....
You can follow my wheelchair awareness-raising/fundraising adventures at Kilted Walker at https://ataxia.scot/ataxia-and-me/
Rare Special Powers team
Write something about yourself. No need to be fancy, just an overview.