As parents of an eleven-year-old soccer player, we often find ourselves travelling to tournaments that require us to spend a few days away. Usually, the families of the players try to secure accommodation at the same venue so that the kids can share the whole experience with their team mates. This once again highlighted the challenges of travelling with my wheelchair and the inadequacies of accommodation providers on the whole. This time, the culprits were in Canberra and the event was The Kanga Cup, the largest international youth football tournament in the Southern Hemisphere.

Caravan and tourist parks are usually a great option for sporting teams as they provide plenty of space for excited kids to run around in, laundries and barbecue facilities for large groups. The most affordable option found by some in our group was the Queanbeyan Riverside Tourist Park at just $75 per night and $10 per extra person. This was for a very basic cabin and you had to bring your own sheets and towels; not surprising considering the tariff. The Park does not have any accessible cabins so this was immediately ruled out as an option for me. (I do realise that Queanbeyan is in New South Wales and not the Australian Capital Territory, however we were trying to find accommodation close to the soccer fields that my son's team was most likely to be playing on.) I tried the Australian Institute of Sport as they have some accessible accommodation, but they were already fully booked months ahead of the event.

Next, I tried Canberra South Motor Park which had no vacancies and no wheelchair access anyway. As we were also likely to have one of my son's friends with us and we'd be staying for five nights, I accepted that we were probably not going to find something at the cheaper end of the market and started looking for apartment hotels. A laundry would definitely be a requirement with two boys playing up to three games of soccer each day. I contacted Canberra Short Term & Holiday Accommodation, the Medina Classic Canberra, the James Court Apartment Hotel and the Waldorf Apartment Hotel, none of which had any truly accessible apartments. Some told me that their accessible rooms were not fully accessible, which in one case meant that the shower was over a bathtub! I started to lose patience at this point and politely told the receptionist that in fact the correct way to answer my initial question was “No madam, we do not have any accessible apartments”. This raises another irritating issue which is that the sector still doesn't always understand the meaning of “accessible”. The Abode Apartment Hotel had one accessible option but it only slept two people so I would have to book a second studio apartment for the two boys and pay $1,500 for the five nights. It was a similar story at the Clifton Suites on Northbourne.

In desperation, I reluctantly began to consider hotels, even though I didn't relish the idea of being in a single room with two lively boys for five nights. I once again came across the issue of accessible rooms usually sleeping a maximum of three, therefore being forced to book an extra room for the boys. Some hotels didn't have a room that interconnected with the accessible room narrowing the choice even further. I have stayed at the Crowne Plaza in Canberra before so was happy to find out that they could offer me an accessible room with an interconnecting second room for the boys. Not so happy to learn that I would then be paying $2,156 for five nights in Canberra.

Finally, after calling nineteen different places and making alternative arrangements for my son's friend, I found something suitable: The Quality Hotel Woden. At $910 for five nights with a guest laundry and adjoining the Woden Tradesman's Club, this hotel probably wouldn't ever have been on my radar as somewhere I'd like to stay in Canberra, however the accessible room and the proximity to soccer fields made it a good choice for our trip. In addition, the Club was fully wheelchair accessible and was prepared to host a team dinner for over 40 young soccer players and their parents.

Just for the record, I really like Canberra. Public spaces and buildings are generally good for accessibility, although sports grounds could do with some improvements for wheelie spectators. What the whole experience did highlight though is the way that the accommodation sector, particularly in Canberra, has a very narrow view of what it needs to provide for people who travel with wheelchairs. A “one size fits all” approach does not work for the general population, so why do accommodation providers seem to think it is acceptable to use this approach for its wheelie clientele? In my experience, many places providing accessible rooms have a bed in which two people can sleep together and, if you are lucky, either a single bed or provision to add a single portable bed. This mostly works for my family as I am married to my carer and we have only one child, but what about wheelchair travellers who are not married to their carers? Or wheelies with more than one child who really need an interconnecting room so that they are close to the kids? Or families with many children but only one disabled child? I am also finding more and more examples of accessible rooms that only accommodate two people in the one bed, particularly in expensive cities like Sydney.

Consider this: for able travellers, most hotels offer quite a wide variety of rooms and suites often categorised into executive, deluxe or superior and containing one or two queen or king beds. You will also find interconnecting family rooms, special rooms just for kids and apartment hotels with one, two or more bedrooms as well as kitchens, living rooms and multiple bathrooms. Once you have found the right hotel, you can choose the appropriate room or apartment, and then decide if you want to pay extra for a balcony or special view. The choices are numerous and varied. Contrast this with my own experience and even after calling nineteen different places in Canberra, I was left with a “choice” of one.

Surely our nation's capital can do better at setting an example for other cities to follow. This would undoubtedly be gladly welcomed by all Australians with disabilities with the added bonus of pleasing international visitors travelling with wheelchairs too. While I don't expect providers to cater for every conceivable variation in parties of guests, it would be nice to think that the travel sector was at least starting to improve the glaring inequality in its offerings for able as opposed to disabled travellers. My hope is that eventually, the inherent discrimination and lack of choice for wheelie travellers will become a thing of the past.

No, I'm not referring to the movie The Sixth Sense and the ability to see dead people (although that would be really handy at times). I'm talking about humans' ability to recognise where their body parts are, both in space and in relation to their other body parts. This ability is often referred to as the sixth sense and is called proprioception.

When a couple decides to start trying for their first baby, it is usually a time filled with a dash of excitement and a pinch of wonder, but what happens when they already know that an incurable neurological disease is already in the mix?

Starting a family is a decision that should never be taken lightly and this was certainly true when my husband and I took the plunge. We had married young but always planned to wait for ten years before starting a family, just as his own parents had done. This would afford us the opportunity to work and travel first and put me at the age of thirty when we had our first baby.

Unfortunately, when I was 28, I was diagnosed with multiple sclerosis. Due to the highly unpredictable nature of the MS monster (as I call it), nobody can accurately forecast how an individual will be affected by it in the future and so planning a family is a task fraught with uncertainty. Along with all the usual worries about this new chapter in our lives, we bore the additional burden of knowing about the MS and yet having no idea about what that meant for the future. Would my symptoms get worse? Would I pass on the risk of developing the disease to our baby? How would we cope with all the implications that we couldn't even envisage?

For those diagnosed after having children, the decision never needed to be made, but for people like me who were diagnosed before starting a family, there can be a fair amount of anxiety deciding whether or not to have children at all. I cannot advise other People with MS (PwMS) one way or another, but I can share my experience in the hope that it may help them with their own decision.

When I was first diagnosed, I registered with the MS Society and went to a Newly Diagnosed session as recommended by my neurologist. The room was filled with people of various ages; the newly diagnosed and their partners or families sporting similar shell-shocked demeanours to our own. There was also a panel of volunteers with MS who shared their thoughts and experiences and answered questions from the new 'recruits'.

Strangely, I don't remember asking about having a baby, but I do remember asking about getting a puppy as I was planning to buy one for my husband for his 30th birthday. A tired-looking woman answered “Do yourself a favour and don't get a dog. I have four kids and a couple of dogs, and while I love my animals, they just mean even more extra work for me.” I know that the lady meant well, but I'm really glad we didn't follow her advice at the time. Our Rhodesian Ridgeback 'Scout' was with us for nine glorious years and provided immense happiness in our lives.

I do remember telling my neurologist about our plan to have a baby when I was thirty and asking for his advice. He told us that as there was no cure and no way to predict my particular future with the disease, the best thing we could do was to continue on as we had already planned but immediately start one of the available treatments and surround ourselves with as much support as possible. Then when we were ready to start trying for a baby, suspend the treatment and see how it all went. For the next 18 months, my symptoms were quite mild with just a few relapses here and there so we followed the advice and started trying for a baby.

I fell pregnant almost immediately and as often happens during pregnancy with MS, all the symptoms completely disappeared. It was as though I didn't have the disease anymore. In September 2000, when I was 30, just like we'd planned, we had our darling son Kai who changed our lives in every possible positive, amazing way. We immediately fell head over heels in love with him and are still enthralled by the love, joy and utter completeness he has brought with him into our world.

About four to five months after giving birth, women with MS often experience a relapse and I was no exception. I had a substantial relapse which resulted in difficulty walking and the loss of sight in one eye. Fortunately I regained the function in that eye but soon lost it in the other. Luckily, the optic neuritis resolved itself, however, as our precious son naturally gained his ability to walk, I slowly lost mine. I continued to accumulate disability to the point that now, almost 13 years after being diagnosed, I am confined to a wheelchair.

The shadow of the MS monster still permeates our lives and may yet affect other decisions about our future but it's a constant challenge to plan around such a shifty beast. Statistics can at least offer a little guidance. Women are about twice as likely as men to develop MS, so that favours our son, but if one of your parents has MS, you have a one to three percent chance of developing the disease — as compared with the risk in the general population, which is just a tenth of one percent.

There is also a geographic element to the occurrence of MS: it is far more common in areas such as Europe, southern Canada, northern United States, New Zealand and southeastern Australia but researchers are yet to discover why these are high-risk areas and the low-risk areas of the world are closer to the equator. They do know that if a child moves from a high-risk area to a low-risk area, or vice versa, he or she tends to acquire the risk level associated with his or her new home area. But if the move occurs after puberty, the young adult usually retains the risk level associated with his or her first home. Along with all the usual worries and questions about decisions that may affect your child's future, we encounter some additional ones and are left asking ourselves some unusual questions; should we actually consider moving closer to the equator before Kai hits puberty?

You might wonder whether or not we would change our decision to have a baby at all if we could go back in time and my answer is unequivocally 'no'. Our hearts simply overflow with the intense love for our son and I wouldn't exchange that nor the experience of being a mum for anything in the world. The MS monster is a skilled and wily thief that has already robbed me and my husband of so much; I am immeasurably glad that we didn't let it steal our chance to become parents too.

A diagnosis of MS can bring with it a lot of anger, which is understandable, but if you already have anger issues this can compound the situation and make you a very angry person indeed. As a general rule, angry people aren't nice to be around so it's a good idea to decide early on how you want to deal with all of the anger in your life. I used to have quite a hot temper which can sometimes be looked on favourably when you are a sparkly teenager but tends to relegate you to the 'grumpy old woman' pile once you hit a certain milestone age. To avoid being thrown on the pile, I've found that I can stop my anger in its tracks by asking myself one simple question: what would Audrey Hepburn do?

Obviously I didn't know Audrey personally and I am basing my opinion purely on what others have written about her, but she seemed to be a genuinely beautiful person, inside and out. By all accounts, not only was she the epitome of style and class she was also kind, loving, gracious, gentle and modest, right up until the end. Even if all of these attributes were part of a constructed persona (not that I believe they were), these are surely admirable qualities to try and emulate.

Sometimes I find that people can be really annoying, especially en masse and in public, which is why I avoid crowds whenever possible. I used to be quite an impatient person myself and would hate it when people walked too slowly in front of me. MS has forced me to slow down but occasionally, particularly when out on my speedy travel scooter or wheelchair being blocked by clueless pedestrians, my impatience resurfaces and I suddenly feel the urge to ram my scooter right into someone's backside. Now when I feel even the hint of such impatience or anger bubbling up inside me, I take a moment to ask myself "what would Audrey do?" and carry on the imaginary conversation thusly "no, Audrey would not ram her scooter up that annoying person's bottom. She would patiently wait for them to move or perhaps even politely ask them if she could please pass by." Just by taking a moment, my anger is averted and a stranger's butt is spared, an outcome that I am sure would receive Audrey's stamp of approval.

I also like to call on Audrey for advice in the face of what my husband and I have dubbed 'fuisances'. A fuisance is a favour that has turned into a nuisance. For example, when a neighbour very kindly puts your bin out for you but puts it way over on the grass rather than at the end of the concrete driveway so that when you zip out in your wheelchair in the darkness later that night with the smelly fish leftovers from dinner your wheels get covered in wet grass and dog poo which you only discover when you get back inside and realise that you have traipsed said grass and dog poo all over the carpet! It's hard not to be angry, but fuisances are usually carried out with such good intentions you really must resist the urge to give in to that anger. Instead, remember to ask yourself what Audrey would do and take a moment to respond in an appropriately graceful manner. Admittedly Audrey would likely have had someone to take out the smelly fish rubbish in the first place, but that's not the point.

Finally, my imagined Audrey also helps me to recognise the importance of accepting help with grace. Prior to my diagnosis, I always preferred to be the sort of person who would provide help to others, not ask for help myself. Worsening disability has forced a role reversal for me and I now find myself having to accept help far more often than I give it. This didn't sit well with me until a wise and dear friend pointed out that on the whole, most people actually get great satisfaction from helping others, just as I used to do. This made me feel a lot better about the situation. Rather than view an offer of help as a criticism of my physical ability, as I have seen others do, I remember Audrey and accept with graciousness, genuine thanks and a smile.

I was recently invited to speak at the Shoalhaven Women's Conference, thanks to a glowing recommendation from my dear friend Ingrid (I encourage you to check out her wonderful resilience blog and site at http://www.ingridpoulson.com).

The media love splashing it about, particularly in relation to multiple sclerosis. It's a guaranteed ratings booster, but if, like me, you are a person with multiple sclerosis (pwms), the careless addition of the word "cure" often results in false hope and many calls from well-meaning relatives and friends.

This recently happened to me when Catalyst, an Australian television program, advertised it's latest piece about a possible cure for ms. I received calls, text messages and emails from my wonderful support network, as I have done numerous times over the past twelve years since I was first diagnosed. I felt compelled to use this blog to say thank you to everyone who thought to contact me but also to comment on some of the issues raised by the program.

The presenter began by asking whether it was possible for multiple sclerosis to be cured and then assured us that according to these "medical mavericks" the answer was yes. She then introduced us to Dr David Wheldon and his wife Sarah Longlands at their home in England. Dr Wheldon was reluctant to use the word "cure", preferring to say he feels "that the disease has gone"; I understand, respect and appreciate his reticence to use the "C" word. Dr Wheldon, an expert in infectious diseases, believed that Sarah had been infected with a common bacterium called Chlamydia Pneumoniae (Cpn) and blamed this for Sarah's multiple sclerosis. He then set about developing a protocol, or regime, of three different antibiotics to eradicate the bacterium from Sarah's system. Fortunately for Sarah, this approach appears to have worked.

So what do you think a pwms, such as me, would do with this information? Perhaps I would research this myself and follow Dr Wheldon's suggestion that I stay on his recommended combined antibiotic protocol (CAP) for at least one year? Well, that's exactly what I did. Between June 2006 and August 2007 I took the antibiotics suggested. My GP was prepared to write the scripts for me but warned about the risks of long-term antibiotic use and noted in my file that this was my decision rather than her suggestion. She also advised that the antibiotics were not covered by Australia's Pharmaceutical Benefits Scheme (when prescribed for this purpose) and so would cost more than usual.

Unfortunately, Dr Wheldon's protocol did not seem to work for me but that is not to say that it doesn't work at all. In fact, there are a number of people who have experienced similar improvements to Sarah. At this point, I would like to tell you something that my former neurologist said, which was this: he wouldn't be surprised if we eventually learn that ms is actually a number of different diseases with numerous causes. This makes a lot of sense to me. It would explain why the disease can vary so dramatically from person to person and why some respond to particular treatments better than others.

While I was following Dr Wheldon's protocol I kept an online diary, or blog, to track my progress and to share my experiences with others. The blog appears on a non-commercial website run and supported entirely by volunteers to provide help and information about Chlamydia Pneumoniae and the human diseases in which it has been implicated. Dr Wheldon and Sarah Longlands freely give of their time and expertise to contribute to this site, along with many other volunteers, answering questions and encouraging bloggers like me to continue with the protocol. I have the utmost respect and appreciation for them all and in some ways feel as though my body has let them down by not responding to the combined antibiotic protocol as expected and indeed hoped.

Multiple sclerosis has long been referred to as the mystery disease and will remain so until further pieces of the puzzle are uncovered. Clinical trials are needed but as pointed out in the Catalyst program, clinical trials into antibiotics that are off patent are a bad investment for pharmaceutical companies as they are not profitable. It could therefore be a long time before new theories are thoroughly tested and as mentioned, it's time that I can't really afford.

And so while I wait, I consider the prospect of travelling overseas for a stem cell transplant which usually begins with high-dose chemotherapy and carries with it all the associated risks of that. I weigh up the pros and cons of switching to a medication that could result in me getting a brain infection that usually causes death or severe disability. I then assess my current quality of life and usefulness in it and know that I am not yet ready to risk the devil I know for one that may be much worse. Not yet anyway.

Unfortunately, there are still far too many variables and unknowns for anyone to talk with any authority about a cure for multiple sclerosis. It is my fervent wish that someone somewhere will be able to claim this right soon.


More information:
The Catalyst program discussed here screened in Australia on ABC1 on 23 August 2012. To watch the episode online, click here. Alternatively search for "MS Cure?" Series 13 Episode 14 or enter the following address into your browser http://www.abc.net.au/catalyst/stories/3572695.htm

To find help and advice on Chlamydia Pneumoniae (Cpn), click here or enter the following address into your browser http://www.cpnhelp.org

To read the blog I wrote while I was following Dr Wheldon's combined antibiotic protocol (CAP), click here or enter the following address into your brower http://www.cpnhelp.org/blog/nessabear

Have you ever noticed that when you are in a bad mood the whole world seems to be too? On the flip side, if you are feeling happy you may find that all the people you encounter are happy as well. Whether we know it or not, we project our feelings in many subtle ways and others pick up on this and reflect what they are feeling right back at us. It makes sense then to project what you want to reflect in all your daily interactions with others. This is certainly not a new idea, however, I believe it is an extremely valuable one, particularly when coming to terms with disability and it reminds me of the first time I used a mobility scooter.

I was at a large shopping centre with my husband and his parents. Our son Kai was quite small, maybe less than a year old. It was becoming increasingly difficult for me to walk any distance at all, even with a walking stick, so I had started the habit of finding somewhere to sit and telling everyone I was happy to wait for them while they shopped. A short time later, my darling mother-in-law Annie returned driving one of the centre's courtesy mobility scooters. I was absolutely horrified and refused to get on it. It was far too embarrassing; what would people think? Thankfully, Annie can be persistently persuasive at times and so, after some tentative driving practice, I organised to meet up with everyone a short time later and found myself driving around the shopping centre, by myself, completely independent and free again. I was hooked and soon bought my own travel scooter.

As I got used to using this new tool, I noticed how others reacted to me. Some smiled, but a lot of people avoided eye contact with me altogether. A friend admitted that she felt awkward because she didn't know how she should behave or what she should be doing to help me while I was on the scooter. I quickly realised that, on the whole, people would take their cue from me. If I was embarrassed, they would feel embarrassed for me but if I treated the scooter like the tool that it was and largely ignored it, others would too. This approach has worked well for me and I encourage others to try it. Of course, there are times when you simply can't ignore me or the scooter, such as when I run into a display at the newsagent's or my reversing beeps seem to go on forever while I'm reversing out of a shop. At these times, apologies and a sense of humour work wonders.

From walking sticks and wheelie walkers to wheelchairs and scooters, mobility aids bring with them a whole host of stigmas and so it can be a very difficult and emotional process accepting that you need one. I am often stopped by strangers wanting to ask about my scooter and to tell me about themselves. I have heard numerous stories about spouses or other loved ones who could really benefit from a scooter but refuse to entertain the idea of using one, instead choosing to stay at home alone. Age and disease steal enough from a person without you allowing embarrassment to snatch your freedom and independence too. If I could reach out to these people I would dish out some tough love and tell them to stop wasting precious time worrying about what others think and get out there! Put a smile on your face and wait for it to be reflected back at you in the people you meet. The worst that can happen is a stony glare, and let's face it, you wouldn't want to know anyone sporting one of those anyway.

Lying even more immobile than usual, I started to chastise myself. Why on earth hadn't I done my stretches yesterday when I could? Why hadn't I gone swimming yesterday when I could? It was only when the ability to do those things was taken away that I realized how lucky I was to have had the ability in the first place. Joni Mitchell's lyrics kept running through my head "Don't it always seem to go/ That you don't know what you've got til it's gone". I think maybe this could be a theme song and handy reminder to take nothing for granted when coping with the ms monster.

I already try to take stock of what I can do and appreciate what I have but it's so easy  to overlook these in the general hustle and bustle of just getting through the day. In amongst all the life maintenance of meal preparation, cleaning, washing, household chores and well, just living, I do try to focus on the tiny positives. Rather than regret the fact that I can no longer walk around my house at all, I say to myself "Hey, look at me: I can stand up from Ugly Betty (my wheelchair) and do some dishes as long as I have the bench to lean against." Tomorrow, I might not be able to stand up at all.

The good habit of not taking things for granted requires practice, particularly when in our western society we expect and feel entitled to so much. Lying in bed, unable to move my head from side to side without great pain, I realized that I had not been practicing this for a little while and resolved to get this good habit back on track. I thought about all the things, big and small, that I had to be grateful for: my husband, my son, my extended family and friends, food and drink, a comfortable bed, a safe home, access to medicine. The list was endless. Over the next few days, my neck and back improved and I could face the drive to the chiropractor who did a few corrections that gave immediate relief.

Now that I am back to 'normal', I am still trying hard not to take anything for granted. The sometimes progressive and often unpredictable nature of the ms monster is what makes this a priority for me. Today I was able to get down onto the floor and do some stretches and get back into Ugly Betty without assistance; I watered my plants outside; I put clothes in the washing machine and dryer; I made coffees for my husband and sandwiches for my son; I wrote this blog entry; I had no pain in my neck and I concluded that all these seemingly trivial and mundane little victories are not to be sneezed at.