Category Archives: Blogging

Blog Action Day – Human Rights

Blog Action Day 2013Every year since 2007, thousands of bloggers have come together for one day to talk about one important issue. Previously, bloggers have focused on the issues of poverty, water and climate change. This year, we discuss Human Rights:

Recently a woman from Glasgow with primary progressive multiple sclerosis won a ruling (thought to be the first of its kind) that changes to housing benefit breached her human rights, paving the way for similar appeals.

Since April this year, social tenants who are deemed to have too many rooms have had their housing benefit cut, the so-called ‘spare room subsidy’ or ‘bedroom tax’. The woman in this case lives with her husband in a two bedroom house, and lost 14% of their housing benefit, resulting in arrears with their housing association.

However, tribunal judge Lyndy Boyd ruled that the woman’s case must be viewed within the context of the Human Rights Act 1998 and the Housing Benefit Regulations 2006, and ‘it would be incompatible with the appellant’s rights under Article 14 of the European Convention on Human Rights read with Article 1.’

Due to the woman’s severe disability, she is not able to share a bedroom with her husband (who also provides care during the night), and as such, their house is not under-occupied. The tribunal ruled that they required a bedroom each and a decision to cut their housing benefit therefore breached her human rights.

The woman’s bedroom measures 3.2m by 3.1m. Her ceiling tracking hoist is 3m by 3m, her hospital bed is 2.2m by 1m. She also needs her electric wheelchair next to her bed, a wheelchair ramp, remote power door entry, specially widened doors and a wet room. She is assisted by specialist carers three times a day who also need to be able to move around the room freely.

The Department of Work and Pensions have commented only to say ‘we will need to look at this particular decision in detail’ and that ‘tribunal decisions at this level do not set a precedent.’ Therefore anyone else in a similar situation could also have to endure the stress and humiliation of this process. We can only imagine what this couple went through whilst still having to live and cope with severe disability on a day-to-day basis.

I for one though am full of admiration that they found the strength to take the case to tribunal. The DWP may claim this is not a precedent, but this couple has surely given a much-needed voice to thousands.

Tagged , , , , , , ,

By Doing Nothing, I Am Doing Something…

Diana’s my guest blogger today. She writes a brilliant blog  – imtoofancy.com – about everything from Candy Crush to Breaking Bad. She has MS, and for Diana, it stands for ‘mucho special’. I’m pretty chuffed that we’re going to meet up next year when me and The Teenager go to New York…
Imtoofancy

I was diagnosed with RSRM Multiple Sclerosis on January 20, 2012. Since then I’ve been to five doctors and called two my own.

Every doctor I’ve seen has highly recommend I take medication. I briefly took Copaxone when I was newly diagnosed but after too many faux panic attacks, which are apparently normal, I decided I would rather handle my treatment organically. AKA no medicine, no side effects.

Of course I know that I should at least have a primary neurologist and so I continued on my quest to find a doctor I like. And then I did. She was affiliated with a hospital with a noted MS center. I’m not sure what I was expecting but I walked in knowing that I wasn’t going to be taking medication but hoping she’d still want me as her patient. Of course she agreed with every doctor before her – I should take medication. But I liked and trusted her so much that I promised her I’d that I would consider taking medicine if my MRI showed I had new lesions.

I was certain I wouldn’t have new lesions on account that I’ve been feeling pretty good. Diet and exercise, in addition to acupuncture and reducing stress have allowed me to live normally and with minimal interruption. Sure, sometimes I feel like it’s raining on my skin, my balance is lackluster at best and brain fog is a companion but it really isn’t that bad. I can and will survive.

But of course I was wrong about the lesions. My new MRI results showed three new enhanced lesions. During our follow up appointment in which I was supposed to pick the medication (I promised) I barter with the doctor. Again. And again she explains to me that just because I don’t feel symptoms doesn’t mean new lesions aren’t forming. As we speak, even.

My options are Gilenya and Tecfedera. I have to either fear heart attacks or JC virus. In fact, Tecfedera hasn’t even been on the market long enough for us to really know the side effects. What if I start growing fins? Or worse, I become the one patient who gets a brain infection. And trust me, I know it’s not that simple. I know that science is smarter than I am. But I also know that when you try to fix one thing in your body, there is a risk of another thing will get sick. Treat MS, say goodbye to your autoimmunity. Or say hello to thyroid issues. Or so many other issues.

I have yet to schedule an appointment to actually start any medicine. I’m too scared. Maybe it’s irrational but I can’t help but to think that with my luck, I will develop a new disorder that will require more medicine.

I suppose by doing nothing I am doing something. By not scheduling that followup appointment with my neurologist, I am making a choice not to take the medicine. I suppose I am taking risk either way. Thanks, MS. Thanks a lot.

Tagged , , , , , , ,

Stumbling Off To Parliament

stumbling off to parliamentI had an interesting email the other day inviting me to attend an event at the Houses of Parliament to find out more about Lord Saatchi’s Medical Innovation Bill.

The event is aimed at ‘leading bloggers and You Tubers’ (their words, not mine, and I now have a very big head), and will explain how social media can be used to put the power of the Bill into the hands of patients.

The Medical Innovation Bill is intriguing, originating from Lord Saatchi’s devastation after his wife, the novelist Josephine Hart, died of ovarian cancer in 2011. The Bill is designed to help doctors innovate and find new ways of treating disease, specifically cancer. Currently, the fear of litigation is holding these doctors back, forcing them to follow well-trodden paths of standard procedure.

The Bill has support from many leading doctors and scientists across the country. It has also been tested on some of the UK’s most senior legal experts, and they have stated that they understand the need for legal clarity in cases where doctors seek to innovate – and that this Bill provides that clarity. This Bill will therefore support sensible innovation, while protecting patients.

Although aimed primarily at people with cancer and the doctors who treat them, could this Bill potentially mean anything for people with MS and their treatment? Although we are not suffering from a life-threatening disease as such, we’ll still be living with it our entire lives. Is there room for innovation in the treatment of MS?

Before the event this Monday, I would really like to find out what you think. How can we open this debate up to include MS? Do you think this Bill will make any difference if it is passed? Hopefully I will have a chance to ask Lord Saatchi a question or two – if you have any ideas please let me know.

For more information, check out these two articles below:

The fear of being sued is ruining modern medicine

Innovation excellence

Tagged , , , ,

Dating. With MS.

GoslingSimone from Manchester is my guest blogger today – she’s just started blogging, so check it out here. She was diagnosed with MS in 2006:

Without boring you with details of my diagnosis, aged 30, steady relationship, wedding planned; I then found myself diagnosed and single aged 30 and 2 months. Those last two months were only because it took 6 weeks to track him down after he Usain Bolted away from the neurologist’s consulting room.

So, on top of the regime of injections, aches, needles, bladder nonsense, constant terror at an uncertain future – I also had to get back on my bike and ‘try to find a boyfriend’. *

After 2 years, hiding in my house, holding on tight as I held it together; persuasion from well-meaning friends persuaded me to date online to seek my Manchester Ryan Gosling who would be able to see past those two hated capitalised letters and see me. Guardian Soulmates seemed the place to start. Surely the men on there were pretty tolerant? They all said they were and had endless photos of themselves cuddling chimps and demonstrating kayaking heroics.

Reader, I have not the time to tell you about the horrors I endured. The sociopathic Greg Rusedski lookalike OR the mountain climbing freak who listened with tears in his eyes as I told him of my MS, then MADE me climb Mount Snowden ‘to prove to myself that the MS was no barrier’ and then dumped me the next day as he couldn’t face the prospect of spending his later life as a carer…

I decided that this woman could take no more. I would buy a cat (or rather, an animal with no fur due to allergies); I would stoically face my future alone. Then I received the email in my Soulmates inbox – ‘Mark is interested’. It is a truth universally acknowledged that a single individual in possession of an online dating subscription must be in want of a new message. So I replied and we wrote to each other and he was a journalist – light and funny and clever and articulate. I hadn’t told him about my diagnosis but there was time yet and so we met up.

After an odd evening with a morose, half-drunk man, we reached 9pm, by which point he was looking mournfully into his ale and I was imagining what kind of turtle I would buy for company and whether it would cuddle me on winter nights.

I said, ‘Look, this isn’t working, is it – I”m going home.’

He grabbed my arm with tears in his eyes and then said, ‘you’d never be interested if you knew.’

‘Knew what?’ I almost shouted, trying to free my arm and also catch the attention of a member of bar staff.

‘I have MS’ he half shouted/half sobbed.

‘So do I’ – I said quietly.

I took my coat off and we talked non-stop for a further 4 hours.

Dating with MS is hard and complex and awkward and requires honesty, trust and bravery. However, there are moments that make you realise that we’re all dealing with our own crap and it is whether you are willing to start a journey with someone who brings an unwelcome companion to your new relationship.

Incidentally, the journalist guy was definitely NOT worth starting a journey with. Nothing to do with the MS, he was just a self-important heavy drinker with two over-indulged, long-haired cats.

*Mum’s advice every time we talked, for about two years…

Tagged , , , ,

Emotions….

Craig's pictureCraig is my guest blogger today. He’s just started his own blog, so check it out at www.jonnyspandex.blogspot.co.uk.

Hi, my name’s Craig. I’m 27 and from Leicester, UK, and I’ve got MS (shock!).

Sorry if I’m sat funny, I’ve just injected copaxone in my stomach.

So, after my request for a guest blog was accepted, while I made a tea for the missus and installed MS (see what I did there?) Word, I got to thinking about what I wanted to say, the ideas just started rolling! But I had to pick one, which is like when you have to pick one thing out of several you like and want. So I’ll start like this:

Emotions. Emotions are like MS. We know what they do, and how they work (how symptoms occur in MS, not the disease itself). The issue with both is that we don’t know how to stop them. My daughter is deaf, has been from the day she was born, but it was caught fast and she got hearing aids. At 4, it started deteriorating. I knew it was coming, but the night her deaf teacher rang and told me, I cried my eyes out. I knew exactly why I was and the reason scares me. I’d lost control of the situation, we’d countered on her hearing loss with the aids but it wasn’t going to be enough as it got worse and I was powerless to stop it. Quick end to the story, she’s now got cochlear implants and is fine! 🙂

Right now I’m doing things to hopefully help with MS; I’m in control (aka remission!). But with my first relapse, it hit home at the seriousness of what I’d got, that night I lost control. I’ve still got a lingering side effect, but it’s part of me. More recently, I’m looking at situations in life more and more and imagine what it’d be like. I could actually cry at soppy films sometimes, not because Di Caprio dies at the end (hat that film!)  but because I’m relating to stories so much more. A PPMS sufferer I speak to on Twitter (sorry, Steve, it’s you!) was having an especially bad day and what I read on it made me so angry, that I/he/anyone can do nothing for it. It made me feel so many emotions but again, no on has control over it, all you can do is sit back and watch the proverbial hit the fan.

Forget all that anyway, the footy’s back!

Tagged , , , , ,