Another week with MS – and it’s World MS Trend Day! #WMSTD #cureMS

Just another week with MS. When you have MS you’re never alone and you never have a shortage of people to talk about the most intimate parts of your daily life.

Once again – I leave nothing out! In honour of World MS Trend Day I thought I would give you a little insight into this week with MS.

Tuesday – 6 monthly urologist appointment to see the man who told me 6 months ago that I have a “pristine bladder” – there’s something to put on your resume! He still can’t believe how good my bladder is, so we will do another ultrasound in 6 months. Our conversation? How do I pee when I can’t transfer myself onto the loo and Ian isn’t at home? He doesn’t know, but the only solution he can think of is doing self catheterization…but if I can’t transfer, my hands aren’t good enough. He looked puzzled… ah well….see you in 6 months.

By the time I left I couldn’t speak, couldn’t move. Perhaps we should have gone back in and asked him how he thought I should be now… No… I went home to bed. Slept 5 hours. Woke up no different. No speech and movement all evening. Ian doing full transfers for me.

Wednesday: I need repeat prescriptions so I go to see my GP, again. We go over my neurologist appointment and my urologist appointment. (Try say those two words fast…neurologist, urologist…only an ne different!) So we end up talking about how to pee when I can’t transfer. She’s firmly against catheters going to my pristine bladder so says she will put in a referral to my Occupational Therapist as “they often have great solutions”. I can’t be the only person in history with this problem?!? Why is there no answer to this that these people just know?!?

I tell her not to worry, I’m seeing my community nurse the next day and she works with the OT so she usually does a referral anyway. No, no, I want to do it, says my GP. Fine, knock your socks off.

And you’re not speaking very well, are you? Really!!!!

I go home with no speech, no movement, go to bed. Sleep a lot, again. 

The phone rings “Michelle, this is intake appointments! Are you okay! We just had a referral from your doctor saying you must be seen tomorrow about your bladder…” I explain that all is okay, that my GP must have got the wrong end of the stick. I go back to sleep.

Thursday: The community nurse comes. For an hour and a half we talk about all the things I can’t do. We talk about me not being able to transfer (sometimes) and how do I pee if Ian isn’t here…she decides I’m not safe to be left alone for more than an hour or two… so….

We decide it’s time to apply for CSIL – independent support so Ian can have some respite…geocaching time…each month. What a process! We have to keep a diary for a month and time every action Ian does for me. Get my clothes out for me? That’ll be two minutes! Chop my food up? Another couple of minutes. It’s going to be a long month…

She left…I went to bed and slept a lot. Some speech, some movement, but not the usual amount

So in three days I have talked to four people about my pristine bladder and not being able to transfer (sometimes) to pee – a urologist, a GP, an intake booking clerk and a community nurse – and a have an appointment with an OT to come… and I still don’t have an answer… HOW DO I PEE IF I CAN’T TRANSFER (SOMETIMES) ON MY OWN?!?

Thank you MS, thank you. Without you, my life would be empty of these conversations…

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Internet Access – a necessity for the isolated and disabled.

What is a necessity? To get technical, we could look at Maslow’s Hierarchy of Needs:

 

When asked about exactly this, FCC Commissioner Michael O’Rielly said that he saw necessities as those things firmly rooted in the bottom of the hierarchy – food, water and shelter. In this article he says that people “can and do” live without the internet.

That’s true. Millions of people in the world live like that. And the vast majority of people could complete the whole of Maslow’s hierarchy without internet access. What’s different for disabled people, then?

Consider the housebound person. How do they interact with the world? Stay in touch with family? Work? All of these things can be achieved easily through access to fast, cheap internet at home.

Isolation is a major issue for disabled people, as accessing the “outside world” can present a variety of challenges. The internet is no replacement for direct human interaction, but it’s a start. 

Which level of the hierarchy of these? The second level! Safety and security! So for the disabled, the internet can deliver needs just one level above the basics of food, water and shelter.

For me, the internet is my window of the world. It keeps me connect, informed, stimulated mentally. It allows me to interact on a variety of levels, from family and friends, to advocacy and involvement with the MS Society. I can have weeks without leaving the house, but I still feel part of the world. I strongly support access to the internet as a necessity for people like me.

Technology enhances and changes lives for people with disabilities

Today I read this wonderful article in the Guardian about the effect that Proloquo2Go and an iPad has had on the life of a man with autism. I know the effects of this software as I also use one of the apps from the same company, and it is incredible.

A speech pathologist friend told me that not long ago – maybe 5 or 10 years ago even – technology like this was incredibly expensive. Upwards of $10 000 for a box that was programmed to speak various words that could be put into phrases. My friend also told me of the hours she would spend setting each one of these up every time one of her clients got one.

Now I have an iPad and an app that cost $100. Yes, there are free apps  but none have the capabilities of these apps. In the version I have, I type and it speaks. I have used it to do speeches for me and to take part in conference calls. Admittedly, I don’t use it as often as I should, as it takes practice to have a conversation, both from the person typing and the person listening! I keep challenging myself to use it more often. Let’s call it a thought in progress.

The voice I use is called Rachel. She’s a bit posh, but she’s English. If I really wanted to, I could spend the time and money getting my own voice synthesized…but would I really want to listen to myself?!? Did you know that Stephen Hawking has chosen to stay with the choppy voice with the US accent that we all recognise him with rather than go to something smoother? Why? Because we all identify him as having that voice!

When I say I have an iPad, that’s not actually true. I have two iPads and an iPhone and it’s on all three of them! Why two iPads? Well, when I bought the first one I really didn’t think I would use it that much as I had an android tablet I loved, so I would ONLY use it for this app and bought the smallest size. Yeah, no. I quickly ran out of space. I now keep that iPad at my bedside to use in all the hours I spend in bed and I have a BIG memory iPad that goes everywhere with me. Plus a bluetooth speaker and bluetooth keyboard and we’re away!

The change for me is not so huge as it is for the man in the Guardian article. I know that, at the moment, if I wait and rest, my speech will come back. For him, this is his only way to communicate. 

Not being able to communicate is way worse than being in a wheelchair. I needed to return something to BestBuy. Ian was meeting a friend in the mall, so I said I would go by myself and catch him up. My speech failed and I was reduced to the slow slurring speech that I have posted in previous videos. I was treated extremely poorly by the counter staff who refused to refund my purchase. I left in tears. Ian returned the next morning with the same item and was refunded immediately. I often reflect on what it would be like if this was my constant daily experience with everyone.

Through a closed Facebook group for people that use these apps, I have met a number of people like Kevin. Their stories of how they feel liberated to finally be able to communicate thoughts and feelings are amazing. Without it, they are reduced to no communication, pointing or single words that they use for functional things. 

The app that Kevin uses, Proloquo2Go, allows people to build picture boards on themes. These boards then allow them to communicate complex ideas. Look at the detail that one person created on this one board. Amazing and life changing!

  

Disability awareness: individual v organizational responsibility?

When it comes to raising awareness of the issues faced by people, it’s hard to know where best to direct the education – the actions of individuals or the actions of larger organizations. The answer is probably both, but where has the most impact? Aiming for a grassroots change in opinion so that the public lobbies for change or looking for leadership from  larger groups to set the tone for everyone to follow?

I’m going to try to bring together a number of separate thoughts I have been having, so settle in for a long read.

Recently I have seen a rise in articles on the web, both in disability-specific sites and newspaper sites, that talk to the ways that “able bodied people” annoy “disabled people”.  This article sums up the massive response on Reddit when the question “What do we (able bodied people) do that we think helps that really doesn’t?” The responses made me smile, because like most people in a wheelchair, I’ve had to deal with all of them, and on a regular basis, and you will have heard me complain about them. Last week I was in a restaurant and I recognised the accent of a lady and sure enough she was from close to home for me. I stopped to talk to her and she couldn’t stop touching me! Running her hand up and down my arm! I would gently pick up her hand and return it to the table top, but sure enough, it came right back. It was cute, and certainly not the end of the world, but I’m not sure why people feel the need to touch me!

In my first years teaching at Pearson College, one of the students was blind. He used to keep us laughing with many very funny stories of the things that had happened to him just like this and his attitude to exactly these kinds of situations. With a group of 4 other students, I took him on a trip to the US. When we got to the border, we had to go through Immigration where he had to fill in a questionnaire to be given his visa to entry, similar to this. I had to read the form out to him in front of the immigration official, who had to hear his responses. 

I got to question 3 “Have you ever been or are you now involved in espionage or sabotage; or in terrorist activities; or genocide; or between 1933 and 1945 were involved, in any way, in persecutions associated with Nazi Germany or its Allies?” Standing there with a blind, 18 year old Argentinian and having to read this out was somewhat of a farce. And I got the giggles. I tried to read it three times, every time my giggles got worse. Finally the immigrations official got frustrated and shouted out “OR BETWEEN 1933 AND 1945 WERE INVOLVED, IN ANY WAY, IN PERSECUTIONS ASSOCIATED WITH NAZI GERMANY OR ITS ALLIES?!?” 

My student said “Michelle, is this man stupid? He has my passport! Can he not see I was born in 1980?!?” I froze, thinking this could be the end to our trip to the US. The immigration replied “I think we will take that as a ‘no’, ma’am!” Thankfully this individual officer dealt with the stupidity of the situation in a humane way and our trip continued!

Today this situation is in the news. Anyone who goes to concerts or shows in a wheelchair will empathise. I often end up on the back row, so when everyone stands I see nothing, and the sight lines are usually pretty poor. On a trip to Vegas I decided not to see any shows as all of the wheelchair accessible seating was in the last row of every section, often to the side. That means that you pay the same as someone in the middle of the front row of the same section without ever having a hope of achieving the same experience – and you pay a lot more than someone in the centre just one row behind! A constant issue and a constant form of discrimination. This affects people with mobility issues far more than the lady that ran her hand up and down my arm. A better solution would be a purpose built section for wheelchairs with decent sight and sound lines, rather than an add on – and Vegas theatres could certainly afford to do that. In one concert here in the Okanagan I moved myself to the sound desk at the back of the auditorium for a much better experience! I got a few strange looks from the technicians but no-one approached me…luckily…for them.

This week an article in the Daily Mail had as a headline that the German Finance Minister, Wolfgang Schaeuble, had “rolled up” to the meetings about the Greek finance debacle. I bookmarked the story, but it has now been altered. Why is this an issue? Because he’s in a wheelchair. Ha ha ha. He “rolled up” to the meeting. Terrible. What a surprise it’s been altered. Next time I’ll take a screenshot…

Without change “from the top”, without visible equality for disabled people as an accepted and regular part of daily life, individuals are unlikely to change. There needs to be a consistent message from everyone that disabled people need treating with respect and compassion. At the moment, the message is rather one sided. I look back at the lady running her hand up and down my arm, and I see compassion. Lots of the individuals I come across treat me that way, even though their attempts may be slightly misplaced. The response from organisations is often disjointed. I will continue to lobby the organisations for change, while smiling and accepting the well meaning individuals.

Life is for living!

In the last week we have had two additions to our family.

On Friday, July 3rd, we added Deefer to our family – D fer Dog – geddit?!? (Thanks to David on the TV show HeartBeat for that!). Deefer is a beautiful Bernese Mountain Dog boy, joining Lacey, our 3 year old Berner, and making him the 5th Berner we have had in our family.

Any newborn is hard work. Unfortunately Ian has to carry the brunt of the early morning and the cleaning up after him and so on. But hey – puppy!!! So cute and so much fun!

  

Yesterday we got the call to say that our latest granddaughter had been born – Katara Lily, weighing in at 6lb 13oz. Their house isn’t wheelchair accessible, so my best chance of seeing her was to get to the hospital…in Surrey…only 3.5 hours away!

We loaded the car with a doggy picnic and two dogs and set off. Multiple stops later – puppies have small bladders and we wanted it to be a comfortable ride for him – we finally got there!

It was a joy to see Kanata hold her new sister for the first time and well worth today’s “payback” (I can’t transfer independently). 

What a week! Life is definitely for living!

  

Okanagan Grape Escape – what a way to see the Okanagan!

When I got involved with the MS Society Chapter locally in the Okanagan, there was one event that amazed me – and it’s an event I’ll never be able to take part in!

For two days each September, the fundraisers get to cycle to wineries all over the Central Okanagan. They visit around 8 or 9 on the Kelowna side of the lake on the Saturday and roughly the same on the West Kelowna side of the lake on the Sunday. The number of wineries changes each year with the route, but it covers the little guys like House of Rose and the bigger names like Summerhill. At each winery there is an exclusive tasting and if the riders choose to buy anything, they don’t have to cycle along with the bottles clinking; all the bottles get transported for them.

What a great way to experience the beauty of the Okanagan, to see the grapes growing on the vine and then taste the wine that is made! What a great way to support local businesses and local tourism! Over the years we have had people travel from all over North America just to take part in our bike ride – not only are we raising awareness of MS and the MS Society, but we’re also raising the profile of the Okanagan!

All the meals are included, with a banquet on the Saturday night too, and along the route there’s support all the way. We have Fresh Air Experience giving the biking technical support and the HOGS – the Harley Owners Group – riding as route marshalls.

I think it’s an incredible way to fundraise. Not only do people with MS benefit from the money raised, but those who are raising the funds get a world class experience.

I know you’re interested – you can find all the information HERE! This year the event is on September 19th and 20th, and by following the link you can find all the details on how to register.

We get wonderful support from sponsors. Just like our Walk, the National Sponsors for our Bike Ride are ScotiaBank, and I think they have a team in our ride this year. Every year we have had the bike ride in the Okanagan we have had amazing support from RONA. Our local store is the start and end point and they provide so much more than that. They have an amazing, dedicated team of riders who raise lots of money, and Matt and his team from the store support us throughout the year as well as the weekend.

A couple of weeks ago I was honoured to speak at a Gear It Up event. That’s a warm up event where riders go for a practice ride together and hear tips on how to get in shape and maintain their bikes for the weekend. I provided the link to MS and the MS Society. Here’s the other thing that amazes me. Most of the riders at this Gear It Up event did not have a connection to MS! They were riding for the experience and the great weekend – but now we have brought them into the MS family. 

I know that there are many people with MS throughout Canada who are able to ride, and I look up to every one of them. There are also friends and family members that ride, and that shows their continuing commitment to the people in their lives with MS. Those who ride for the fun of the event, but then learn about MS – you’re pretty special people too!

Gear It Up riders on June 20th, 2015