Quality of Life – redefining the parameters

Getting the best Quality of Life is a big part of your life if you have MS, and it really varies from one person to the next, based not only on your disease progression but also personal circumstances. Quality of Life for a young mother who wants to care for and play with her children might be quite different than it is for me, for example.

As we all know, I’m in a wheelchair. I regularly hear people say that they “couldn’t cope” if they were in a wheelchair or that they “would have no quality of life” in a wheelchair. Today’s blog post from the team at Bart’s deals with exactly this, which you can read here. You can probably pick my response in the comments! I have never had any problems dealing with my wheelchair psychologically because there hasn’t been another option. I found it liberating rather than limiting.

I do feel that my quality of life has taken some major knocks over the last year. The progression of my cognitive fatigue means that I cannot be as involved in life outside my house as much as I would like. No concerts or even listening to music, and for a former music teacher, that’s hard. Eating out becomes a challenge, because of the noise and activity in a restaurant. Very limited access to shopping is not so difficult to deal with mentally(!) as I’ve never been a great lover of shopping, but it’s another job that my husband now does alone whereas we would have done it together. And one less thing for me to have input to. Fancy a meal based on something you see spontaneously in the grocery store? Doesn’t happen for me. Like shopping at the farmer’s market? Doesn’t happen for me. Need new clothes? Buy them online and hope for the best, or plan to wait for a “good day”.

I sort of feel like the beginning of the show “Without A Trace”. Each week, someone would go missing. In the opening of the show you would see them in the last place they had been seen before they went missing, then they fade away. I feel like I’m fading away from outside life. How to cope with that? Start this blog. Make the most of the opportunities I do have. Look for assistive technology to help me as much as I can. Redefine the parameters I live by.

The reason for this blog post was partly the Bart’s blog, but mainly from a situation that happened this week. A close friend’s mum has MS which is in a very advanced stage. She has no independent movement except for the fingers on one hand. On top of that, she has been diagnosed with cancer. The oncologist asked her to describe her day to day routines. Hearing the limits she is under, the oncologist replied that if that was her quality of life she wouldn’t treat the cancer. My friend and her mum were shocked. This lady is certainly not ready to die and wants to fight the cancer. For me, the biggest issue here is the attitude of the oncologist! Surely the question should have been to ask this lady how she feels about her quality of life, rather than to project her own feelings into a situation she has no ability to understand. Quality of life can only be judged by the person living it.

Attitude has a large part to play in dealing with your quality of life. I choose to see my glass as half full and to make the most of every challenge that comes my way, knowing that there are many others who deal with far greater challenges than I have. If they can do it, so can I.  It’s not easy and certainly I have times when it’s difficult, but for me, it enhances the quality of life that I have.

Photo of Stephen Hawking

My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Dont be disabled in spirit as well as physically

 

Advertisements

HandyDart Action with local MLAs @mssocietybc

Today Sherry (our client services coordinator) and I met with our local MLAs, Norm Letnick, Steve Thomson and Christy Clark’s representative, Becky Harmata, met to present our concerns about the provision of HandyDart (known in some places as paratransit) in the Okanagan. We have been working on this initiative this year and we have put together a coalition of interested local service groups whose members also use HandyDart. We have written a call to action, which they received prior to the meeting, and we presented a summary of the areas that we feel need action. Here’s a brief summary:

We need more consistent coverage, as there are areas that are covered by regular buses but HandyDart doesn’t go. We also need more availability – longer hours. For those people who book trips as individuals, this can mean that the buses are only available for 4 hours a day, and never past 7:30pm, due to constraints in the system. Can you imagine being reliant on this service and never being able to go to a movie or to go out for dinner?

These two issues are covered by law in Ontario, stating that their HandyDart service must be offered to the same places and the same hours as the regular bus service. It’s an equal opportunities issue. Last year, BC set out a plan called Accessibility 2024, in which it hopes to be progressive province for people with disabilities in Canada. Clearly on this alone, it has a long way to go.

Kamloops is a smaller city but we are often compared to them for many services. Kamloops gets over 100 HandyDart hours a week and we get 60! This certainly caught their attention, as they admitted that they like nothing more than to beat their competition!

We did have a number of other issues, with research to back them up. We would love to be able to present our proposal to HandyDart and BC Transit, but unfortunately the system is so opaque that we cannot even find out who to present to!

The two MLAs and one representative took notes and one of them will take it on as a case file. Their staff will report back to us on the issues we raised, and we will take it from there. I’m sure that this isn’t going to be fixed overnight, but I am determined to stay with this issue, to bring better service to a vulnerable section of our population.

And of course, we finished it all with a photo!
If anyone is working on a similar campaign and would like to read our report and the research we had done, please contact me through the comments and I will send you a copy.

Photo of Michelle and Sherry with the MLAs

Celebrating the Okanagan Chapter at the AGM @mssocietybc

An AGM is a funny affair. It’s one of those things you have to do, and want to do, to open the books and the floor to the general membership once a year. It’s full of motions and bizarre language like quorum. “Have we got a quorum?” “Well I didn’t bring one, did you?!?”

Today was my first AGM for our Chapter in the role of Chair, which meant I had to give a report and, well yes, pay more attention to “getting it right” than in the past. 

As it came closer to the day I became to wonder what I was going to say and what people wanted to hear me say, and if those two were the same things. I’m really proud of the things that happen in our Chapter, but what if that wasn’t being communicated? 

Finally I realised it was a celebration of what we had accomplished – in 2014 we did some great things. And even more importantly, it was the place to celebrate people. This was our look back at the year. This was our time to reflect on a job well done.

Sherry, our client services coordinator, does an incredible job. She has woven a net of strategies that support people with MS locally in a myriad of ways. If you want to talk to her one-on-one, you can, face-to-face or on the phone. If you want to be put in touch with the right person to help with the problem you’re facing, she does that. If you want a group of people to hang out with and chat over coffee, yup, there’s that. If you want to learn about things that are related to having MS, that can happen too, from financial and tax issues to chronic pain. Not that big a leap between those two, though.

Last year she thought there was a need for young people with MS to get together, so she started a group for them. This year she wants to get a friendly visitor program going, where people visit those people with MS who have been isolated and would love to chat with a friendly visitor once in a while.

It’s an incredible net of support that she’s created. Hopefully there’s something for everyone and we would hope to catch anyone with MS before they slipped through. The more I talked about this net, the more I realised just how amazing it was and how right it was to be saying it out loud for everyone to hear. 

The fusty process now has more meaning for me. Next year I will look forward to looking back, and I will once again be proud to celebrate everything we have done this year. And I’ll still be looking to see who brought the quorum.

Support Kory and Alicia, please! @KoryCrowder

Kory is one of those people you happen to come across on Facebook that makes your life all the richer.

Please read this to the end.

Kory’s wife has MS and, like me, really struggles. Kory supports her mentally and physically every day, and they both show their love for Dustin in everything they do. 

Kory also turned the frustration we all share with MS into action. In their community of Brockville, Ontatio, he has organised a weekly auction of donated items for the last few years. I’m not sure of the combined total, but this year he raised over $7000. An amazing effort. Here’s a news article all about their fundraising, linked to Inside Brockville.

On June 28th he has a massive community sale coming up. You can find all the details HERE.

Dustin has the same spirit as his parents and he makes loom bracelets and key rings to sell to raise funds.  I’m sure he’ll have a stall at the sale on June 28th

Kory and Alicia believe that it’s much better to give and receive, but the time has come for them to receive. Alicia has started to fall a lot. 5 times in the last week. Kory and Alicia really need a lift to help them. Kory’s brother has started a Go Fund Me campaign to help them, as they’re looking at needing $3000.

If ever there was a couple that deserved support, it’s Kory and Alicia. If you are able, please give.

You can find the details HERE! If you would like to know more about Kory and Alicia directly, their email is astjohn@cogeco.ca. 

Mr Uhthoff – who turned up the heat?!?

This week in the Okanagan it has been 34C. That’s 12C above normal.

Beach time! Party! BBQs!

No… for someone with MS this temperature means reverse hibernation. Summer days spent indoors, AC on, hiding from the sun.

Sunday went like this for me: morning – indoors; afternoon – in bed; evening – got up at 5pm, ate dinner outside, back in bed for 7pm in a dark, cold room!!! I did manage to get up for another hour after that, but that’s it!

So what does Mr Uhthoff has to do in this? He was a German ophthamologist and back in 1890 he discovered that when his patients with optic neuritis exercised, their eye sight got worse. The reason? Their body temperature rose.

We now know that a rise in body temperature, through  anything, but including exercise, showering, and, of course, the weather causes a spike in MS symptoms. Whatever symptoms you have get worse as your body overheats and once your body cools down they go away. 

What can you do? The simple one is avoid heat! That’s the reason our hot tub is tepid. Don’t go out in the heat and if you have to, limit your exposure. You can also use cooling vests or wrist and neck coolers. 

We didn’t have AC before I got MS. Even in the sunny Okanagan we were fine with open windows and fans, because the temperature drops so much overnight. Unfortunately MS put an end to that, and we were able to get  heat pump (which also cools – oxymoronic name…) through various energy grants that were available at the time and a tax break from Revenue Canada, as air conditioning is a recognised medical device for people with MS. Check that link out here!

At the recent BC and Yukon Division MS Society conference, the keynote speaker, Dr Reebye, a physiatrist, told the story of a man with MS in Texas. He was driving home and the AC in his car failed. It meant that his leg got stuck on the accelerator and he drove into his neighbour’s garage. Luckily, he wasn’t injured. The police showed up – and the man called his neurologist! Why? To explain Uhthoff’s phenomenom to the cop!

Please enjoy the heat sensibly – those of us with MS will be watching from indoors!

  

Tecfidera, I’m not sniffing goodbye

For the last two years I’ve taken a Disease Modifying Drug (DMD) called Tecfidera, a pill that you take twice a day. As I’ve mentioned before, DMDs hope to reduce the rate that you have relapses.
I think Tecfidera has worked well reducing relapses, but there’s two things that I am not missing, and they are covered by this photo:

 
Every day for two years I flushed! The pink sink doesn’t really do it justice. I was red twice a day. Once or twice a week it was like intense sunburn and it hurt! There are suggestions for how to manage it, but nothing worked.

I also had a runny nose and sneezing fits for two years. I knew that it could be the Tecfidera, but I didn’t really think about it too much. I know others had had the same thing. Every jacket and bag I use have a stash of tissues and honey and lemon throat sweets! Bedside, living room, car, boxes of tissues everywhere.

And I won’t go into the gastrointestinal ones. Use your imagination.

I stopped taking Tecfidera last Thursday. Since then, I have not flushed once, which I expected. What I didn’t expect, however, was I have blown my nose once in a week and haven’t sneezed at all! It’s gone! And immediately! Kleenex are going to wonder why their sales in Western Canada have dropped so dramatically!

There is a serious point to all this. DMDs do an important job, but it’s sort of invisible. How can you tell if it slowed the rate of relapses you were going to have, if you don’t know if you were going to have one?!? How can you measure something that might happen – or might not?!?

Instead, you get these annoying side effects. Every DMD I’ve taken has them. I call them the paper cuts of MS as they’re just annoying. For me, they’re certainly not as bad as my other symptoms – flushing compared to not walking, for example – but they gnaw away at your quality of life. And these aren’t even the reasons I stopped taking this one! I stopped because my lymphocytes were dropping and I was getting more infections! Serious stuff!

These annoying side effects (and of course the serious ones) are the reason a lot of people stop taking their DMDs. They weigh up day to day quality of life with a hoped for long term outcome that it’s hard to see. They cash in the insurance policy, because they don’t believe in what they’re being sold. I can see both sides of the argument, but for me, taking the DMD is something I choose to do.

Next stop in a couple of months, Aubagio. It seems I might lose some hair. Whatever.

 

But what does it mean? Or mode? Or median?!?

I used to teach an IB maths course that had a lot of statistics in it. I used to enjoy looking for examples of bad uses of statistics in the media. Now it seems I’m finding them in my MS “journey”!

One of the most misused statistic is the average. When people hear average they typically mean the mean…the type of average where you add them all up and divide by how many you’ve got. Average age of the kids in a kindergarten class? Add up all the ages and divide by how many kids. 5.9 years old. Great. Average number of siblings each child has? Count all the siblings, divide by how many kids in the class. 2.3 siblings. Wait. No. How can you have 0.3 of a sibling?!?

There are three measures of the average of something. The mean, the mode and the median. If you don’t know what they are, well, hey, I’m not teaching anymore!!! If you need a refresher, watch this. In fact, if you don’t need a refresher, you should still watch it…

In an earlier post I mentioned the new drug that I’m about to take, Aubagio, a disease modifying drug that hopes to slow down the rate you have relapses. To recap: last year, my neurologist said he wouldn’t prescribe it, as its rate of reducing relapses was given in the research at just above 30% or so, the same rate as the drugs from 20 years ago. Why the change of heart, I asked? It seems that in practice what they’ve found out is the drug either works or it doesn’t – so it either reduces your rate by 0% or, I’m guessing, above 50% (my numbers, don’t quote me). It was simply incorrect to add them all up and divide by how many.

Today I read this article in the Guardian –  Why doctors get it wrong about when you will die. Not the most thrilling title, and I opened it with some trepidation. However, once again it all comes down to statistics, or at least our understanding of statistics, and specifically averages. There’s also a great link in the article to the essay by Stephen Jay Gould about his response to being told he had 8 months to live. 

What it comes down to is this: the next time your doctor tells what the average for something is, ask them what they mean, or mode, or median?!?