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50shadesofsun

News and Opinions about MS, Health & Disability

Looking back to move forward into 2017

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It’s New Year’s Eve and so tonight we bid farewell to 2016 and prepare to welcome the infant 2017.

At this time every year, we hear some people say that they are glad to see the back of an unhappy time and look forward to a hopefully better year ahead. On the other hand, there are others for whom the last 12 months have been good and are hoping for that to continue.

yearThat made me think about how 2016 has been for my beloved Lisa and I. Not usually being one to formally sit down and take stock, this seems to be a good time to do just that. So, let’s take a quick look back at the old year as it draws to a close.

Having moved from North Wales in the UK to Andalucía in the south of Spain in November 2015, this year has been spent largely adapting to the different lifestyle, local customs, dealing with a change of language, a new currency and so on.

Home

Our home itself is superb, being detached, all on one floor with level access at the back and a purpose-built wet room installed in place of the bathroom. It also has extremely low maintenance gardens, front and rear, as well as off-road parking.

The living room and kitchen/diner are joined by a wide arch while another links the living room to the interior hallway that has doors to the wet room and two bedrooms. The arches give more than enough room for wheelchair access if required. Overall, we have twice as much room here in Spain than we did in our apartment in Wales.

Health

The year did not start out too well when I had to be rushed to hospital when my urine turned to blood with a little urine mixed in. It turned out to be nothing to do with multiple sclerosis but as a direct result of blood thinning medication prescribed in the UK as part of treatment for a heart condition. Unknown to me at the time, the situation was more than serious; it was life-threatening. Amazingly, the Spanish health service had the problem under control in just six hours and discharged me after only two nights in hospital.

Since then, my blood thinning medication has been changed and has been kept under control.

As far as MS is concerned, of course it is still here – and always will be – but things have changed for the better. I visited the AA Maximov centre in Moscow in October to be assessed to see whether or not I would be likely to benefit from having HSCT. Four days of intensive health tests led to me being told, on the downside that the chemotherapy drugs might pose an unacceptable risk because of my heart condition. However, on the upside, all the MS lesions in my brain and spine are old and inactive; there is no current inflammation.

Interestingly, in order to help maintain this inactivity, I was advised by Dr Fedorenko to avoid all vaccinations – including the flu vaccine.

He also revealed that my vitamin D level was far too low. It was not just insufficient, it was even lower. It was classed as deficient. He advised taking a daily vitamin D supplement to correct the situation. Since starting to take this, I have seen improvements in balancing and walking ability although not endurance, have found muscles to be getting stronger (well, less weak), have suffered far fewer falls, and generally feel more ‘able’.

Writing is a passion of mine and to have expanded from this blog of mine to Multiple Sclerosis News Today is therapeutic in more ways than one.

Finance

The cost of living in Spain is certainly lower than in the UK. Groceries, car fuel, even the cost of eating out – everything seems to cost less here than in Britain, except electricity. And the knock-on effect of those cheaper costs means that our income goes further than before. Indeed, earlier this month, I managed to pay off a credit card!

Language

Linguistic skills have never been my strong point. At school, I spent five years studying French to quite a poor standard, and living in Wales for 23 years left me really unable to speak Welsh, although I can sing its national anthem Mae hen wladfy’n hadau and, from memory, can reci.e the countrhy’s longest place name, the Anglesey village of Llanfairpwllgwyngyllgogerychwerndrobwllllantysiliogogogoch – oh, and I can spell it too.

The Spanish language is a lot easier and, although I am by no means fluent, I can take part in basic everyday conversations and can understand basic newspaper stories.

To sum it up

So, all in all, 2016 has been a positive year for us. How was it for you?

Happy New Year

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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In Moscow for HSCT: Part 3 of Phoebe’s Story

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Two weeks ago, I introduced you to Phoebe Scopes, the British woman who was the first international multiple sclerosis patient to receive hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in part 3, Phoebe takes us with her to the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow.
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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

Ian: When did you go?

Phoebe: On Sept. 17, 2012, my husband and I stood in arrivals at Moscow airport with two suitcases and a piece of paper with the address of Maximov hospital. As the first international patient to be assessed and treated, Dr. Fedorenko (Denis Fedorenko, MD) was waiting to meet us.

We made our way out to the airport car park where a group of taxi drivers stood waiting for their next job. Now about 6 p.m. on a September evening in Moscow, it was cold and the light was disappearing fast. I was extremely weak and felt completely vulnerable so, I was very grateful that my husband had his wits about him as he negotiated the fare and we got into the car.

The hour-long journey from the airport to the hospital felt like a white-knuckle ride. With his seat in an oddly semi-reclined position the driver used the roads as though he was going around a speed track and by the time we got to the crowded motorway, the driver along with other motorists, hopped on and off the hard shoulder to avoid queues.

I decided to pull the large hood of my top over my entire head before closing my eyes and minutes later, I was laughing nervously under my breath as I remembered the words of my neurologist. He was almost certain that HSCT would kill me, but treatment was now really looking like the better option here.

It was late evening by the time we arrived at Maximov hospital. This was a big hospital with a number of entrance gates around it that were now locked.

Remember that the driver did not speak English and neither of us could speak enough Russian to have a conversation, but he got out at one of the gates and pressed an intercom to speak to somebody, anybody on the other end. Getting back into the car, the driver made his way to one of the smaller wings of the hospital where the doctor and his then temporary assistant greeted us.

Ian: What was the quality of treatment and care received?

Phoebe: As mentioned earlier, the hospital was just at the beginning of their experience with international patients, so there were still some areas that were not yet confirmed, such as accommodation for carers. Dr. Fedorenko was not happy to leave my husband to check in to any one of the random hotels nearby, so invited him to stay in my room for the initial assessment period and if results were favorable for treatment, the doctor assured my husband that I would be well looked after if he needed to return to the U.K. during my isolation period of HSCT.

I grew more and more impressed with the quality of medical attention I received from the doctor and his dedicated team once on my own. The doctor spoke good English, but his staff did not speak any, yet we all found ways of communicating.

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Valuable symptom translation document for nurse and patient understanding. (Pic: Phoebe Scopes).

Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

Dr. Fedorenko worked tirelessly and wanted to make sure that in his absence, the nurses would know what was happening, how I was feeling, and whether they needed to call him. Nothing was too much trouble for the doctor and this put me completely at ease.Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

I didn’t know what to expect being on my own where no one else spoke English. I thought I would be very bored during treatment … sick and bored because reading books or magazines triggered headaches and fatigue and my dexterity was labored, making writing difficult. So, I decided to use my laptop to keep an account of my HSCT experience in isolation, in Moscow.

With my design background, I combined illustrations with daily entries, which kept me as busy as I needed to be and provided good distraction when things were tough. I called this “my diary in isolation.”

I soon got to know all the staff; the cleaners that left NO surface unattended and nurses working on the ward and I watched as they maintained the highest levels of care and dedication required when looking after seriously sick patients. I will never forget their kindness.

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Phoebe with catheter inserted, ready for stem cell collection. (Pic. Phoebe Scopes).

In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

A day later, the first thing I noticed was that my head “fog” and fatigue had lifted to leave behind a great deal of clarity and energy. My cognitive abilities also fully returned, allowing me to add simple numbers again, work out general problems in my head and multitask without the need to find a dark room or sleep afterward.In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

My vision was clearer, my balance was better and my limbs felt lighter. As a result of these physical improvements, I walked a few meters unaided.

Before I was finally discharged, I felt surprisingly energetic and remember thinking that this was not how someone that had just received chemotherapy should be feeling. The doctor, seeing my new-found energy, carefully reminded me that the cocktail of drugs such as antibiotics, steroids and pain killers taken during treatment, were still to an extent supporting me.

He advised me that once some of these drugs were reduced or removed completely, I would likely experience a turbulent period of extreme symptoms that would continue while I built a new immune system.

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

The day that my husband and I left the hospital to return home, Dr. Fedorenko waved us off as the taxi drove away. I remember how he stood watching the car until we were out of sight. I know that he was already worrying about how I would manage the flight home. I was wrapped up from head to toe for the journey and wore a surgical mask, and while I was looking forward to going home, I was strangely already missing my isolation room that had been my secure home for six weeks.

In part 4, we join Phoebe on her return home.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Phoebe Scopes, British HSCT Pioneer in Moscow, Part 2

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Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergo hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2,  we pick up the story of the 46-year-old who lives in London.

Ian: So, you had done lots of research. How did things then develop?

Phoebe: By late 2009, I had new challenges affecting my balance, coordination, strength and energy which eventually forced me to hang up my boxing gloves. I was devastated about this but still felt I would return to it in time.

Unfortunately, after having a bike accident and a relapse in 2010, my MS appeared to be behaving more aggressively, and I believe that around this time, I transitioned from relapsing remitting (RRMS) to secondary progressive (SPMS). By now, my EDSS (Expanded Disability Status Scale) was fluctuating around 5.5.

It was quite unsettling just how quickly MS disease seemed to take a significant hold as disability quietly crept in, but I refused to be distracted and continued with research.

Ian: How did you find out about HSCT? What attracted you to Moscow? What was your experiences with neurologists at home when deciding to have the treatment?

Phoebe: I came across some news about a lady in Australia that would shortly receive HSCT to cure her MS. I read more information and details about this and realized that I had previously stumbled on the procedure briefly some years before. I had read news that a patient in London received HSCT, contracted sepsis and lost her fingers and toes in the battle to save her life.

At that time, I had been blind to this disease called MS so this news had no relevance to me, but I do remember thinking that the treatment, which involved radiotherapy, was terrible and I would never have something as dangerous as that!

Fast forward to recent years. I was glad to hear that for HSCT, radiation had been replaced with chemotherapy which, although still a serious treatment, appeared to be a safer option.

I was excited that there was at last a treatment that talked about curing MS that didn’t involve a lifetime of interferons and steroid use.

Now struggling with relapses and fatigue, I was very interested to receive treatment and was learning that the most effective results were achieved when the therapy was used early. I found and joined a HSCT forum and from there, wasted no time communicating with others.

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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

At that time, there were few places offering HSCT privately and the questions about safety were never too far away. There was also a great deal of variation in the price of treatment from one facility to another, but most places were expensive anyway and were very selective about the patients they accepted.

I learned from a group member that a facility in Moscow was thinking about opening its doors to treat overseas patients and their price was more reasonable, but this facility did not yet have a specific department designated to handle foreign clients.

I called the hospital in Moscow and requested an email address of the doctor who was responsible for HSCT inquiries and once I had these details, I wasted no time introducing myself, scanning and emailing relevant documents, and basically asking as many questions as I could.

In the meantime, I also requested an earlier appointment with my neurologist to share my findings and let him know that I wished to pursue HSCT.

As I sat across from him in his clinic, my neurologist told me that he would not authorize or refer me for this treatment because I had not first used immunomodulation therapy offered to me on a number of occasions.

He also advised me that I would be ripped off if I were to go to Russia or anywhere else abroad, and that HSCT would kill me.

I was shocked and stunned by my neurologist’s unprofessional and “unkept” response. His comments had an air of panic and concern — but not about my safety. Instead, I wondered whether he was worried about the security of his job going forward if news about HSCT got out!

Next week, in Part 3, Phoebe takes us on her visit to Moscow.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Barclay death highlights right to die

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Andrew Barclay, a 65-year-old British man, died earlier this week. But not any form of death because Andrew, who had multiple sclerosis, chose to end his own life at the Dignitas assisted suicide clinic in Switzerland.

He was accompanied to the clinic by his wife and reporters from the Daily Mirror, a British newspaper which has published a detailed story about Andrew’s condition and his decision to end his own life. You can read the Mirror story here.

Whatever you may think of Andrew’s story and decision, I am not going to enter that discussion but, instead, l want to look at the whole assisted suicide issue.

There are two main types of argument used to support the practices of euthanasia and assisted suicide. They are the ethical and pragmatic arguments.

The first is that people should have freedom of choice, including the right to control their own body and life (as long as they do not abuse any other person’s rights), and that the state should not create laws that prevent people being able to choose when and how they die.

The cases … both for and against

Meanwhile, the pragmatic argument is that euthanasia, particularly passive euthanasia, is allegedly already a widespread practice, just not one that people are willing to admit to, so it is better to regulate euthanasia properly.

On the other side of the fence there are four main types of argument used by people who are against euthanasia and assisted suicide. They are known as the religious, the ´slippery slope’, medical ethics, and alternative arguments.

These can be briefly summarised as:

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Dignitas clinic, Switzerland, with founder Ludwig Minnelli. (Photo: Daily Express via Google Images).

Religious – that these practices can never be justified; for example, many people who believe in God say no-one has the right to end a human life;

‘Slippery slope’ – this is based on the concern that legalising euthanasia could lead to significant unintended changes in our healthcare system and society at large that we would later come to regret;

Medical ethics – that asking doctors, nurses or any other healthcare professional to carry out euthanasia or assist in a suicide would be a violation of fundamental medical ethics and, for doctors, the Hippocratic oath;

Alternative – that there is no reason for a person to choose to die because they don’t have to suffer either mentally or physically as effective end of life treatments are available. Because of this, euthanasia is not a valid treatment option, but represents a failure on the part of the doctor involved in a person’s care.

My view may not be yours

Where do I stand? You may well ask!

Well, my religion’s tenet is ‘if it harms none, do as you will’ and so my beliefs don’t tend to fit in with mainstream faiths. That being the case, I cannot accept the religious argument. Choosing to end your own life with your family’s understanding, is not hurting anyone else.

Switzerland has amply demonstrated that the ‘slippery slope’ is not inevitable. They have ample checks, medical and otherwise.

Asking medical professionals to get involved would not be as awkward as may be imagined. There are plenty now that would like to help people with unendurable and never-ending pain to close their lives with dignity. Anyway, it would only be voluntarily not compulsory.

Now, far be it from me to cast doubts on the ‘alternative’ argument but the so-called ‘end of life’ treatments are purely palliative in nature. They relieve some symptoms to reduce pain etc but do little, if anything, for quality of life.

Now, at present, at just a year younger than Andrew, nothing could be further from my mind. Despite having lived with MS for 16½ years, live is good, and is for living. I can’t imagine ever making the same decision that Andrew Barclay made but I think we should all have the legal right to make it.

What do you think? Do you agree? I’d like to know.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Disability Employment: Nothing Changed in Ten Years

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It is now 10 years since my disability, serious mobility issues caused by multiple sclerosis, caused me to leave my last full-time employment.

For a few months, I hung onto the notion that there must be some role for me; one that could be done sitting in an office without too much moving about. Back then, there was no wheelchair in the equation, just a walking stick – or cane as my American wife prefers to call it.

Employment hunting was not easy, however, and it soon became clear that a pattern existed. And it was often carefully disguised as an equal opportunity (EO) policy. In short, although you could avoid mentioning your disability on the application, they discovered it on the EO form. Strangely, despite being well qualified and experienced, whenever an equal opportunities form was involved, I was never invited for an interview.

Then there were other companies without an EO form. There everything went fine until they asked those of us being interviewed to complete a medical questionnaire.  Then the shutters dropped and, suddenly, another candidate was better qualified. Really? Every time?

Frustrated, I explained the problem to my employment adviser at the local Department for Work and Pensions (DWP) Jobcentre. She answered by suggesting I transferred to what was then called Incapacity Benefit, which I did.

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Johnny Mercer MP speaking, Lisa Cameron MP, Philip Connolly of Disability Rights UK, and Lord Addington.

Fast forward 10 years and you could reasonably think that things would have changed, that it would have got better. But no, it seems to be the same.

The deplorable situation has been highlighted as part of a new report by the UK’s all-party parliamentary group for disability (APPGD) – which has cross-party support. The report said people with disabilities are facing “institutional disablism” at the hands of both public and private sector employers.

It suggests that the government needs to take a far tougher stance on dealing with employers that discriminate against disabled staff and would-be employees.

The Disability News Service said that the Ahead of the Arc report – which is supported by MPs and peers from seven political parties – calls on the government to drop its opposition to regulatory action that would force employers to take action.

The AAPGD report says: “It is time to consider abandoning a voluntary-only approach towards requiring employers to measure and to increase disability employment.”

Evidence suggests that the failure of public and private employers to provide appropriate support to disabled people in the workplace and to offer fair access to start-up funds, business advice and business networks amounts to “institutional disablism”, the report says.

It goes on to suggests that employers found to have discriminated against disabled people should face lesser penalties if they have “substantive” equality policies in place.

And it says the government needs “a tighter legal framework” to ensure that disabled employees are no longer “managed out of the workplace” by their employers, something that is happening to an estimated 35,000 to 48,000 disabled people every year.

Based purely on my own experience, I would say that “substantive equality policies” are not enough. They are worthless if not implemented. Implementation needs to be rigorously monitored and enforced with severe penalties for employers failing to deliver.

Anything less than that is a complete waste of time.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Meet Phoebe Scopes, First MS Patient from Abroad to Undergo HSCT in Moscow

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Hematopoietic stem cell transplantation, or HSCT for short, is provided at various centers around the world to a mix of people with multiple sclerosis.

As regular readers know, two months ago I visited the impressive facilities of the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow. There, besides meeting Denis Fedorenko, MD, and his staff, I was able to mix with patients from the U.S., Great Britain, Australia, Norway and Italy.

But the Moscow center did not start out treating international clients. On my return home, I  got in touch with a woman who was the very first patient from another country (Great Britain) to be given HSCT for multiple sclerosis.

Her name is Phoebe Scopes. She is 46 years old and lives in London. This is the first part of her story, exactly as she told me.

Ian: Phoebe, what was your MS history prior to HSCT?

Phoebe: After experiencing almost a year of intermittent sensory abnormalities and bouts of fatigue, I was eventually diagnosed with relapsing-remitting multiple sclerosis in early 2008. With exception to these episodes, I was free of any disability during this time and, for a while, I merely considered MS as a minor and occasional interruption in my life.

Phoebe Scopes

Before diagnosis, I had heard of MS but had no idea what it was. But knowing more about it now, I understand that I was experiencing small, infrequent relapses. Thinking back, it is also extremely likely that the optic neuritis I experienced briefly six years before diagnosis was a sign and had occurred during the benign stage of disease.

I am a mother, wife and designer, and was very fit and active. I cycled six miles a day to and from work, I was a fitness boxer for 13 years and, in early 2009, a year after diagnosis — now with an EDSS of about 3.0 — I took part in a 100-km, eight-day trek across the Sahara desert. The trek was extremely challenging, but I had one of the best experiences of my life. The Sahara trek was one of those things on my bucket list, so I was also very grateful to have been able to do this before further disease accumulation.

Having experienced and overcome various illnesses growing up, I just considered MS as another one of those medical hurdles that I needed to jump over. I was no stranger to hospitals, illnesses and treatments, but for over 10 years, I had been drug- and symptom-free, always opting for nutritional intervention to maintain well-being.

My initial relationship with medications to treat those conditions brought a host of side effects, so I was reluctant to use anything for my MS, but felt overwhelmed about having this ‘incurable’ disease. One such side effect on some of the MS drugs was feeling very tired and drowsy all the time, which seemed to disable and restrict me more than the relapses I was having. So, I declined all the other drugs being offered by my neurologist, who regularly urged me to start taking them.

I would turn up to [the] clinic with articles, or would ring my neurologist to tell him about my findings regarding the drugs he wanted me to take.  The articles usually, to an extent, contradicted his information so I think that my neurologist considered me a bit of a troublemaker! So, instead of the drugs, I started researching and looking at other therapies that could help arrest my MS and tackle minor difficulties that I was beginning to encounter.

My research took me and my husband to various places in Europe and the United States, where I met and spoke with some interesting people. And while the therapies I had were initially effective, their results were short-lived. Some might call this the placebo-effect, and maybe this was the case with some, but not all, the therapies.

I just think that MS is a very complex disease of which no two people are affected in the same way, and most of the time, some of these therapies or treatments need to be repeated a few times before they stick!

Next week, I move to 2009 and beyond in Part 2 of Phoebe’s story.

This story, written by me, was first published by Multiple Sclerosis News Today.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Shameful that charities ‘sell out’ people with disabilites

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Several leading disability charities are being criticized, by a user-led disability group, for flirting with the Department for Work and Pensions (DWP) and  seeking to gain UK government contracts. The Disabled People Against Cuts (DPAC) said that the charities are ‘selling out’ and that there is no way that the charities could speak out strongly against DWP if they won multi-million pound contracts under the new programme. It is shameful that the charities are even considering such actions.

disabilitiesLinda Burnip, DPAC co-founder (pictured, left), said: “It is clear to everyone that organisations taking money from the government to provide services of any kind will not be in a position to campaign in any effective way against its policies on welfare reform.

“These contracts are rumoured to be worth between £2 million and £30 million and once part of propping up the system, any independence to criticise it will be lost. It is shameful that organisations supposedly existing to benefit disabled people are willing to sell them out in such an abhorrent way,” she said.

I agree with Ms Burnip and think it is disgusting  and deplorable that the ‘big seven’ disability charities – most of which are not user-led – all admit they have not ruled out seeking such contracts.

All seven have told the Disability News Service (DNS) that any contracts they win from the government will have no impact on their campaigning work, including whether they speak up about social security reform, including cuts to disability benefits and back-to-work policies for disabled people.

But their generally supportive responses to the government’s work, health and disability green paper – which was published on October 31 – could suggest otherwise. Indeed, one of them – Mind – has already been “caught lying”, according to the DNS, about its interest in seeking DWP contracts under the Work and Health Programme.

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MIND chief executive Paul Farmer is confronted by protesters.

It says: “Paul Farmer, Mind’s chief executive, told protesters on October 31 that the charity had ‘no contracts with DWP’ and that he was ‘not interested in future contracts at this stage’.

“His lies were exposed when a disgruntled employee leaked internal documents showing that Mind was applying to join a DWP framework that would allow it to bid for contracts.”

Last month, the charity’s policy and campaigns manager, Tom Pollard, joined DWP on secondment as a senior policy adviser.

Asked whether winning DWP contracts would impact on its campaigning work, Mind said that it “always speaks out about the issues that we believe impact on people with mental health problems, and we don’t enter into financial relationships which would prevent us from doing this”.

The DNS investigation came as the Charity Commission confirmed that it has written to Mind’s trustees following a complaint about the charity’s close links with the government – and about Farmer’s lies – by Dr Minh Alexander, an NHS whistleblower and former consultant psychiatrist. A Charity Commission spokesman told DNS: “The Charity Commission can confirm that a concern was raised with us regarding the charity Mind.”

The DNS contacted the other six charities. Leonard Cheshire Disability  said that it already provides services under the government’s Work Choice programme, but refused to say if it was seeking contracts under the Work and Health Programme, or if any such contract would impact on its campaigning work.

RNIB said that it was “exploring” possible involvement in the Work and Health Programme as a “specialist sub-contractor”, although only if any programme was “entirely voluntary” because “we don’t support the sanctioning of individuals’ benefits if they do not attend a programme”.

Action on Hearing Losssaid that it “may consider DWP contracts in the future”, but denied that this would impact on its campaigning work.

Scope said that it had “yet to make a decision regarding upcoming opportunities to deliver employment support but hope to make an announcement in the new year”. A spokeswoman said: “We have been and will continue to speak out on the issues that matter to disabled people.

Disability Rights UK (DR UK) said it was too early to say if it would bid for contracts, but if it did “it would likely be in partnership with other disabled people’s organisations”, and that it would “never compromise on being able to speak out about issues of welfare reform”.

Finally, Mencap’s head of employment, Mark Capper, said the charity was “disappointed” to see that the framework for the main contracts “appears to favour large businesses rather than third sector providers who can offer specialised support”, and that it would not want to be involved “unless significant changes were made to involve third sector providers”. But a spokesman added that the charity “may” consider smaller contracts “if we believe they will allow third sector providers to support people with a learning disability into employment”.

The green paper includes the possibility that DWP could in future force all sick and disabled people on out-of-work disability benefits to take part in “mandatory” activity, including those in the employment and support allowance (ESA) support group.

Leonard Cheshire Foundation, RNIB, and Action on Hearing Loss all welcomed the publication of the green paper. The other three charities were more critical, although none of them could be said to have attacked the green paper. DNS reported: “Disability Rights UK criticised elements of the green paper, pointing to its failure to announce any new incentives or requirements on employers, calling for more enforcement of the Equality Act, and warning that the government appeared to be cutting funding for employment support.

Mencap welcomed much of the green paper but was critical of the planned £30-a-week cuts to ESA, and said that the possible changes to the support group “could cause deep concern to sick and disabled people”.

Mind also welcomed parts of the green paper but, like Mencap, was critical of the support group measure, while it also criticised the government’s failure to consider “a fundamental rethink of the way conditionality and sanctions are used”.

Multiple sclerosis charities the MS Society and the MS Trust both guardedly welcomed the green paper, as I have previously reported.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Motability scheme improvements? Really?

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How can they do it? That’s the question being asked, and for good reason, after a UK government minister’s amazing statement last week.

And I’d say that not only is Penny Mordaunt, minister for disabled people (and that includes those of us with MS), on thin ice but that she is in danger of crashing right through it – because what she told MPs is really unbelievable.

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Minister for Disabled People, Penny Mordaunt MP.

According to Mordaunt, she is planning to:

  • Allow claimants to keep their Motability vehicle whilst appealing a decision that they do not qualify for the enhanced rate of the mobility component of PIP.
  • Allow claimants to continue receiving the mobility component of PIP if they are abroad for more than 13 weeks, even where the reason for absence is not connected with medical treatment.7
  • Allow claimants to access the Motability scheme even if they are not in receipt of the enhanced rate of the mobility component of PIP.

BenefitsandWork.co.uk says: “That the DWP is considering letting claimants to keep their Motability vehicle whilst appealing – where they will have around a 60% chance of success – is surprising,

“But it is the last of these suggestions that is the most remarkable. The standard rate for PIP mobility is £21.80 a week. The enhanced rate is £57.45.

“If Mordaunt is suggesting that claimants getting the standard rate should also have access to Motability then the obvious question is: how will the shortfall be made up?

“If the proposal is that simply that standard rate mobility recipients can get a Motability vehicle provided they make up the shortfall of £35.65 a week themselves, then this is not much of a gesture.

“On the other hand, it is very hard to see how the cost of a Motability vehicle could be reduced to just £21.80 a week.”

motabilityThat’s exactly the problem. This government, under both former pri.me minister David Cameron and replacement Theresa May, has proved itself keen to cut the budgets for welfare benefits – and now one of its ministers is suggesting spendi.ng more money in support of its Motability scheme. Or maybe she is alternatively putting forward an idea that will cost each claimant more than £35.

Either way, it shows an amazing level of political naivety and an astounding lack of understanding of, or compassion for, people with disabilities.

BenefitsandWork.co.uk says: “Worryingly, Mordaunt referred in her announcement to people in receipt of the ‘higher Motability component’. By that, the minister appeared to mean the enhanced rate of the mobility component.

“A minister who has yet to master even the most basic terminology relating to her portfolio is not one who inspires confidence . . . let alone hope.”

There, I have to agree. Totally.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Heeding Advice About Vitamin D Supplement Results in Improvements

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Would you like a helping hand? Maybe not, but …

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Giving help to someone with multiple sclerosis, or any other disability for that matter, can be fraught with difficulty for the well-meaning person. And that difficulty comes as much from our reaction as to any mistake on the part of the person offering to help.

Yes, we all like to do what we can, to maintain as much independence that we can and we have all met people who show an amazing amount of insensitivity; virtually forcing us to begrudgingly accept their interference. You know the ones, they don’t so much offer to give assistance as swing into action to give help before you have time to react.

helpBe honest, how often have you felt “put upon”, that the offered assistance was really unwanted and unwarranted interference? I suspect, more often that most of us would like to admit!

Additionally, many of us have often fought to preserve our much-valued independence and used, intentionally or not, a terse “I can manage” or “I don’t need your help” – probably said snappily.

In the face of such responses, it should be no surprise that so many people who could help decide not to do so. In fact, fearful of being given the proverbial brush-off, they often don’t even offer.

It really does not cost those of us who are disabled to be polite. We can all learn to treat with courtesy the people who want to give their assistance. That’s not to say that we always have to accept, far from it, but surely we can say “thank you” for the kind offer while politely saying that we are able to do it ourselves.

Saying “no, thank you, I can manage” doesn’t have to be rude or give offence.

Like cleanliness, you will find that politeness costs nothing. What’s more, it doesn’t hurt. No, really, it doesn’t.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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