Holidaying with Friedreich’s Ataxia

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I love seeing the world; saving, budgeting, and cheap hobbies such as reading, listening to music and browsing the web for cheap deals, make that a possibility for my husband and I.

We hadn’t had a sun holiday for a few years so we decided we just wanted to relax, get some sun, go for a swim and not get stressed about going sightseeing. Not a tall order you’d imagine, but as soon as wheelchair access becomes a factor it’s not as simple as it sounds!

Which is the reason I was so delighted when I stumbled across Las Piedras’s website. Las Piedras is a wheelchair accessible hotel in Andalucía, Spain; having had some very disappointing experiences regarding wheelchair accessible accommodation in mainland Europe over the years I always ask for photos of the bathroom/en-suite I’m going to use, which the owners of Las Piedras sent me no problem.

I was taken aback the photo was so good, there was a walk in shower with a shower chair and well placed grab rails around the shower controls, the toilet wasn’t a high toilet but it was higher than standard mainland European toilets, the horizontal and vertical grab rails were well positioned. The pool and Jacuzzi on the hotel grounds both had hoists for getting in/out of them, finally somewhere that ticked our boxes – we booked a week away in April.

Las Piedraswas even better than we expected, the owner (Adrian) picked us up from Malaga airport in a wheelchair accessible mini bus, as we drove the forty minute journey to the hotel, Adrian told us about the area. There are also hoists and profiling beds available at the hotel upon request. We stayed at the hotel during our first few days relaxing, swimming, enjoying the delicious food, soaking up the sun, but there was an option to go on an excursion. These entailed Las Piedras staff driving, in the wheelchair accessible mini bus, the hotel guests to various accessible attractions within an hour’s drive of Las Piedras.

My husband and I thoroughly enjoyed the break, it’s also uplifting to know that there are businesses such as Las Piedras who honestly cater for everybody!

Needing to bring and pay a PA on a foreign holiday can mean a foreign holiday is financially impossible for some. Please contact Ataxia Ireland if you are willing to donate some of your time or money to help.

Having a Personnel Assistant

I’ve been very lucky up until now, I have of course needed someone’s assistance to get into/out of bed, shower and get dressed for years; but now at 33 years old I don’t just require assistance I require time, a lot of time, as well as assistance to carry out these everyday tasks. While my family have been amazing giving up so much of their time to help and accommodate me, I decided I didn’t want to burden them with as much of my daily care (getting up, dressing, showering) as well as taking me to hospital, consultant, physio, etc. appointments.

I spoke to my public nurse and filled out the relevant forms to be given PA hours over 15 months ago. I have RECENTLY started to receive those hours, and I have several questions no one seems to have answers to.

Who decided one hour of an able bodied person’s assistance was enough time to help someone with a disability to get out of bed, get dressed, use the toilet and have their breakfast?? Because I have to say ever whomever it was who decided this has never lived with a disability!!! My entire life has been filled with people/professionals (physios, occupational therapists, neurologists, cardiologists, GP’s, public nurses, friends, family) telling me NOT TO FORCE MYSELF TO RUSH while doing something as I can only do what my body can do and trying to rush is a guaranteed way to have an accident and hurt myself. So the question stands should I apply for more PA hours and wait another 15 months for an answer?? – And what shall I do during those 15 months?? – Shall I force myself to rush?? And what happens if I break an arm or a leg?? – Which would mean I would require more assistance! Or should I stop eating breakfast?? – surely anybody can see what a pointless round-about this is!! And yet here I am in 2017 with no idea who to ask!!!

I have had to learn with a lot of crap over the years, and I do because I want a life so what else can I do? but this has really gotten me, and I CAN’T/SHOULDN’T BE EXPECTED ‘to just deal with it and move on.’ It is something completely out of my control and yet it affects MY life on a daily basis.

Having a PA is great, mainly because it has taken some of the pressure off my family, but it’s also nice to meet and interact with new people.

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Married to someone with Friedreich’s Ataxia

P1040811Greetings.  My wife asked me to write a bit about what it is like to be married to someone with ataxia, and here is my attempt to describe it.  Firstly, it’s quite difficult to say what it is that is different from being married to someone without ataxia, as I have never been married to anyone else. Also, as far as I can tell, we have a pretty normal husband and wife relationship; we support each other, we love each other and she is always right about everything. However, there are the obvious things that are different from most relationships and these are the topics I am going to write about now.

The wheelchair

Probably the most obvious thing to most people who see us together. Planning an excursion to somewhere new involves a bit of research, but it is always surprising what can be done. Snorkelling on the Great Barrier Reef, watching a turtle lay its eggs on a beach in Australia, dog-sledding in the Arctic Circle, and paragliding in New Zealand have all been possible and there is still so much more that can be undertaken. There are, of course, disappointments. But it can be really heartening to see the efforts some complete strangers will go to to help my wife get to where she wants to be.

The reduced coordination

This one can be more subtle but is probably harder to deal with. It is so hard to watch your wife struggle for a few minutes to pick up, for example, a dropped hairbrush, pick it up off the ground and then drop it again a few seconds later in a different position. You know that if you intervene, you’re taking a little more of her independence away and the more and more little things that you keep doing for her will leave her less able to do things by herself. Then you feel like a patronizing idiot for thinking that you know what’s best for her. And then you feel guilty because you’re feeling bad, but it’s not you that’s actually suffering.

It takes a while to get beyond that way of thinking and realize that it is ultimately her decision when she wants you to help her with something. And that you are free to say no, if you want to, and not feel guilty about it.

It’s even harder to listen to your wife crying after a fall, or because her hand got caught in a door or because she sneezed and head-butted her exercise bike. That last one sounds comical, but did actually happen once and it really re-emphasized to me how cruel a condition Friedreich’s Ataxia is. There was my wife, doing her exercises that were trying to alleviate the symptoms, and the ataxia hurts her another way by not letting her control her body during a sneeze, so that she whacks her head against the bike.

Despite the difficulties, one thing Friedreich’s Ataxia doesn’t take away is someone’s personality. My wife is still the same cheeky, argumentative, gorgeous young lady that I first met several years ago. I personally wouldn’t change anything about her. But I would like the issues caused by the ataxia to either stop developing or even be reversed, firstly because I know this would make my wife happier and secondly because it would hopefully give me a few more years as one of the happiest husbands in the world.

Please support Ataxia Ireland fund research programmes by donating via their website, or contacting Ataxia Ireland directly and volunteering some of your time.

What happens next?

 

P1040280Today is rare disease day, yeah, I’m with you I’m not altogether sure what that means. Friedreich’s Ataxia is a rare disorder so I’ve read, so at a guess I’d suggest it’s something to do with reminding people that just because you don’t hear about Friedreich’s Ataxia regularly or ever that doesn’t mean it doesn’t exist, or that one day it won’t directly affect you or your loved ones. Help raise funds for Friedreich’s Ataxia research and help a treatment be discovered to stop its progression.

While I’ve left home to attend college and moved away for work, now I’ve returned to live in my childhood home on a quiet country laneway. I went for a walk/wheel on that laneway with my husband on Sunday. As my husband pushed me the half mile (of course I forgot to charge my power chair!), we were chatting him asking me about my childhood memories of growing up here and it struck me how much my life had been forced to change in the past twenty years because of this bloody devastatingly degenerative disorder – when I was twelve I cycled this half mile route regularly, when I was twenty-two I wheeled myself this half mile route regularly, and now I’m thirty-two I use my power chair (if I remember to charge it!) or need someone to push me this half mile route.

I know I shouldn’t, it doesn’t help, but I can’t help it I’m only human – what will I be like at forty-two? At fifty-two? At sixty-two? Will I still even be here? I want to be here – I desperately want to live my life! No-one can tell me though, and so I hope. I hope there will be a medical breakthrough, I hope it can stop Friedreich’s progressing, I hope I can continue to travel that half mile route.

Please support Ataxia Ireland fund research programmes by donating via their website, or contacting Ataxia Ireland directly and volunteering some of your time.

Ataxia Awareness

11226183_10153625581032438_7899779594706196372_nInternational Ataxia Awareness Day is this Friday, September 25th. This infographic is to encourage awareness of Friedreich’s Ataxia (FA), it’s meant to be shared! So please download it and share it with all of your friends and family and help increase awareness and understanding of FA.

Friedreich’s Ataxia is a serious, progressive genetic disorder in children and adults affecting the nerves (spinal cord and peripheral nerves), muscles, heart and pancreas.

If I didn’t have Friedreich’s Ataxia would I know what it was? Being honest no I probably wouldn’t. Why would I? It’s quite rare and I know I’m great in social settings but I doubt even me minus FA would interact with 50,000 people! Therefore WE NEED TO CREATE AWARENESS!

Friedreich’s Ataxia is the most common inherited ataxia, however it is rare, affecting between 15 and 20000 people worldwide. OR 1 in 50000 people worldwide.

I’m not even going to try and guess the likelihood of two carriers of the Friedreich’s Ataxia gene having a child together, partly because I’m rubbish at maths! Though mostly because, it does happen – my parents are a prime example. They are both from big families and there is no obvious history of FA on either side, I have lots of cousins (some of them now have their own children now) and thankfully there is no sign of FA. Unfortunately it will happen again and two carriers of the Friedreich’s Ataxia gene will have a child with FA, I hope beyond hope a cure for FA comes before that day arrives. Until then all I can do is help raise awareness so if you see a collection for Ataxia Ireland please donate some of your time or money to them.

1 in 100 people are carriers. Carriers are not symptomatic. When two carriers have a child together there is a 25% chance the child will have FA.

This means anyone can be a carrier of the Friedreich’s Ataxia gene and be perfectly healthy, never knowing or being affected by it. If only one parent carries the gene they can still pass the Friedreich’s gene onto their child. This cycle can continue for generations with no one knowing they carry this gene, until one carrier has a child with another carrier and that child has FA.

People with FA are deficient in the protein frataxin which works in mitochondria; the energy producing part of the cell. Since the body’s cells can’t produce enough energy, damage accumulates in the nerve, muscle & heart cells. 

While I’m no scientist or genealogist I can tell you what this means. It means I, someone with FA, get so tired I don’t know words that can do justice to the level of exhaustion I feel after a busy day. After a normal day I’m wrecked I feel like even just getting into bed is like pushing up a hill – which is standard for me, and after a busy day going to bed is like pushing up Mt.Everest – never-ending. It means gripping a glass, writing with a pen, even brushing my hair with a hairbrush is getting more and more difficult. To put it simply it means everyday five second tasks able bodied people do take me over twenty minutes to do – that’s only IF I’m able can do them, and it’s always getting harder.

Please support Ataxia Ireland by donating via their website, or contacting Ataxia Ireland directly and volunteering some of your time.

Skydiving with Friedreich’s Ataxia

DSCF0174 During March of this year I agreed to do a tandem skydive in aid of Ataxia Ireland at Abbeyshrule Aerodrome, Co.Longford. Yes, I got lots of ‘God, why? There is no way I would do that!’ In my mind it’s more like, why not give skydiving a go? It’s difficult to explain my logic: I feel like my life is full of taking calculated risks, every time I get a new part for my wheelchair takes a lot of time, effort, and tough moments to adjust to but it generally pays off and helps in the long run, so why not try skydiving? At least other people with FA have done this! There’s so much I can’t do, when I get an opportunity to do something it feels like I should at least try it – AND there was the added bonus of raising much needed funds for Ataxia Ireland.

To be completely honest with you after registering and receiving my sponsorship package I was busy fundraising and I didn’t think about the actual skydive much. That was until the day before the jump when the butterflies in my stomach were released and NOTHING was going to coax them back into their box!

As I was getting my harness on and feeling more nervous with each breath I heard my crowd of supporters shouting my name. ‘Come on you can do this’ I thought, and as I kissed my husband goodbye at the door of the plane I felt a sense of calm I’ve never felt before – whatever was going to happen was going to so I might as well try to relax! I enjoyed the plane ride up the view was beautiful and the sound of the plane’s noisy engines was oddly soothing, suddenly from the corner of my eye I saw the pilot give my tandem master, Karl, a thumbs up signal and the butterflies started throwing themselves off my stomach walls trying to escape.

When Karl opened the plane door and I saw the white clouds every muscle in my body tensed I couldn’t think all I could do was feel, I felt panicked and terrified, I clenched my eyes shut and tried to calm my racing heart. Before I knew it I felt a blast of cold air and this incredibly strong force hitting my chest full force; after a few seconds of the freefall I started to acclimatise to the feeling of being blown away when suddenly I was wrenched upwards my entire body felt like someone had reached down their hand down from the clouds and tugged me back up head first. After a second I realised the parachute had opened ‘WOW!’ I screamed ‘did that really just happen?!? Did I just do that?!?!’ ‘You really did! YOU DID IT!!’ Karl laughed.

P1040556The parachute ride down was like sailing through the sky, I got a magnificent bird’s eye view of the woven blanket of fields and rivers that make up our beautiful island as Karl chatted and told me to wave down to my supporters. It felt like only a brief moment later when I could see and hear my supporters shouting encouragement 🙂 The landing and getting back into my wheelchair were a complete daze as were the first few minutes after that! I can’t justify in words just how good I felt after not only doing the skydive but also of achieving such a feat regardless of my disability 🙂

If you are interested in doing a tandem skydive for Ataxia Ireland please visit Ataxia Ireland Skydive 2015 and contact Nora.

Being an Irish Wheelchair User

STP80011After my diagnosis in the late 90’s I felt as though several doors were suddenly slammed shut in my life. Of course there was a lot of physical stuff that was simply not an option anymore, but when I first started using my wheelchair I felt much more independent – I could move whenever and wherever I wanted by myself! The hardest part of it for me were the things I could still do but couldn’t because the appropriate wheelchair access was not in place. I was still able to swim but my local swimming pool had no hoist to get into the pool; I could still go into shops but they had steps into them; I could still go the cinema but there was no disabled parking outside it; I could still go to a restaurant but I couldn’t have a drink because they had no wheelchair accessible bathroom, I could go on for a VERY long time here!!

Though I am proud to be an Irish wheelchair user now that it’s 2015, things have definitely improved, and it’s important to acknowledge that and praise the positives.

It’s equally as important to complain to the appropriate authorities about the negatives, I’m not very proud because I think we still have a long way to go to achieve true equality for people with disabilities/wheelchair users. I’m my own worst enemy at times, sometimes when there’s a problem I don’t want to draw attention to it and by default myself by ‘causing a hassle’ or ‘making a fuss’, because sometimes I’m just tired of it – of fighting, of battling my corner, of making my voice heard. Why should I have to constantly complain to shopping centre managers that there are cars parked in the disabled parking spaces that have no disabled parking badge displayed? Why should I have to argue with people whom leave their luggage in the priority disabled area on the train? Why do I have to complain to pub/café/restaurant management that their disabled bathrooms are so badly designed an able bodied gymnast would find them difficult to use; I could go on for a while here but let’s not, it’s enough to live with this on a daily basis, but I think I’ll go a bit mad if I write them all down too!

The reason we must complain, is to highlight these problems otherwise it’s easy for our government/counsellors/law enforcement to do nothing and ignore these problems ‘No-one’s complained to me, how was I to know there was a problem?’ I’m the very first person who’d point the obvious stupidity of that statement and how useless it is to me in a situation when I need wheelchair access at that moment. Unfortunately, it seems to be how our state still works in 2015.

I realise I don’t exactly ‘blend in’ when it comes to public gatherings, and will always have certain requirements, but I am still A MEMBER OF THE PUBLIC, and as such I should have the same rights as any other member of the public.

Ataxia Ireland is the National Support Group for people affected by Friedreich’s Ataxia and other genetic Ataxias and their families. Please visit Ataxia Ireland to learn more about the ways in which you can support Ataxia Ireland.