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News and Opinions about MS, Health & Disability

10 thoughtless comments we hear about MS – with possible answers

“Oh, that’s that yuppie thing, isn’t it?”

No, I have MS, multiple sclerosis, not ‘yuppie flu’ – that’s ME or Myalgic Encephalomyelitis.

“Pain isn’t a symptom associated with MS.”

Really? Many MS patients and doctors will tell you otherwise. No two MS patients have exactly the same symptoms and just because you happen to know someone with the disease who is fortunate enough not to have pain, don’t assume that we are all the same. We aren’t.

“Are you sure it isn’t all in your head?”

Duh, well it’s certainly not in my´ imagination, if that is what you mean. But each of us with MS have lesions in our brain and on our spine so, in that way, it is really in our head.

“The good thing about having MS is that you’ll never be depressed.”

What? Wherever did you hear that nonsense? People who have a chronic illness, such as MS, have more likelihood of being depressed than those without such a disease.

stupid“Are you still pretending to be ill?”

Oh really! Just because I smile and laugh does not mean I am happy inside. I try and hide my illness and make light of it – but I am still hurting.

“I know for a fact you haven’t got MS.”

Well, that’s very good to know. Thank you so much. Tell me, when did you graduate as a doctor? When did you specialize in neurology? You haven’t, then kindly keep your unsolicited amateur opinions to yourself.

“I often think how I would love to have a little nap after work each day like you do, but I simply don’t have the time.”

I don’t nap because I want to but because I am physically worn out. I just cannot carry on. Let me assure you that a nap nowhere makes up for having multiple sclerosis. Want my nap? Take my MS too.

“You don’t look sick.”

That’s so good to know. Like many others with MS, I strive to look my best at all times despite how bad I feel inside.

“You’re young enough to get better.”

That would be great but, as yet there is no cure for multiple sclerosis. There are promising therapies and research is continuing. But, no cure yet.

“I have a friend with MS and she never misses work.”

That’s fantastic, I am very pleased for her but there are also people who cannot work at all. We are all so varied: there are different forms of MS, a wide variety of possible symptoms and multiple sclerosis itself varies in intensity. After all, it is a progressive disease.

 

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Depression and chronic illnesses can go together

Although you can have one without the other, in very many cases depression and chronic illnesses do go hand in hand.

So, what diseases are we talking about? This list is by no means exclusive but it includes a few examples: multiple sclerosis, heart disease, Parkinson’s, diabetes, muscular dystrophy, and epilepsy. In fact, any illness that lasts for a very long time and is unlikely to be cured completely can be classes as chronic.

One reason that depression is common in people with a chronic illness is that they must adjust to the demands of the illness itself, as well as to the treatments for their condition. Their mobility and independence may be affected and change how they live. And it seems that any chronic condition can trigger depression but the more serious the illness, the greater the risk.

What’s more, it can all be a vicious circle as depression caused by chronic illness can itself aggravate the illness, particularly ones that cause fatigue or pain. This is because depression can intensify pain and cause fatigue – with all that entails.

According to medicinenet.com, the rate for depression occurring with other medical illnesses is quite high: Heart attack 40-65% experience depression, Coronary artery disease (without heart attack) 18-20%. Parkinson’s disease 40%, Multiple sclerosis 40%, Stroke 10-27%, Cancer 25%, and Diabetes 25%.

depression-1252577_960_720Medicinenet.com continues:
Patients and their family members often overlook the symptoms of depression, assuming that feeling depressed is normal for someone struggling with a serious, chronic illness. Symptoms of depression are also frequently masked by the other medical conditions, resulting in treatment for the symptoms — but not the underlying cause of the symptoms — the depression. It is extremely important to treat both forms of illness at the same time.

Treatment of depression in people with chronic disease is similar to that offered to other people with depression. Early diagnosis and treatment for depression can reduce distress, as well as the risk of complications and suicide. People who get treatment for depression that occurs at the same time as a chronic disease often experience an improvement in their overall medical condition, a better quality of life, and are more easily able to stick to their treatment plans.

If the depressive symptoms are related to the physical illness or side effects of medicine, treatment may just need to be adjusted or changed. If the depression is a separate problem, it can be treated with medicine or psychotherapy, or a combination of both. Treatment with antidepressant drugs can start to work within a few weeks.

Following are some tips to help you better cope with a chronic illness:

  • Learn how to live with the physical effects of the illness
  • Learn how to deal with the treatmen
  • Make sure there is clear communication with your docto
  • Try to maintain emotional balance to cope with negative feelings
  • Try to maintain confidence and a positive self-image
  • Get help as soon as symptoms of depression appear.

Strange as it may be, despite having both multiple sclerosis and epilepsy, I have never had depression although I have the greatest sympathy for people who do.

 

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Taxi drivers in trouble for refusing passengers with disabilities, one with MS, one with guide dog

Taxi drivers in south Wales, in the UK, are under fire for refusing to take passengers without good reason. And there is only one allowable good reason, according to Mathab Khan, the chair of the Cardiff Hackney Cabs Association, who said that the only time a cab driver would refuse a fare was if the passenger was unfit to travel, because he or she had had too much to drink.

However, two drivers have been accused of refusing to accept as passengers two different people with disabilities – with excessive drinking not being an issue in either case.

The first driver has since been fined for refusing to take a guide dog in his taxi. Cardiff magistrates found Nader Rohbani-Eivazi guilty of breaking the Disability Discrimination Act 1995. He was fined £200 with £415 in costs.

Barbara Stensland. She has MS but Carmarthen taxi driver refused to take her, told her to walk.

Barbara Stensland. She has MS but Carmarthen taxi driver refused to take her, told her to walk.

The second driver is being investigated by Carmarthenshire Council, the taxi licensing authority after a woman with multiple sclerosis complained that she was refused a taxi to a meeting of the MS Society because the journey was too short.

Barbara Stensland, 43, from Cardiff, went to Carmarthen on August 5 but when she tried to get a taxi from the railway station to the venue, less than one mile (1.6km) away, she was refused.

She said: “I went to the first taxi in the queue outside the station, I told him where I wanted to go. He said ‘No, I’m not taking you.’ So he pointed me helpfully in the right direction and told me to walk.”

That investigation is still under way but the council has promised that it will take “appropriate action”.

Janice Powers. Cardiff taxi driver refused to take her guide dog.

Janice Powers. Cardiff taxi driver refused to take her guide dog.

In the first case, blind Janice Powers, 49, was stunned when the taxi driver Rohbani-Eivazi refused her fare because she had her guide dog leading her way.

Janice, of Carmarthen, told how she was with three friends after attending the launch of a diversity and equality initiative at the National Assembly in Cardiff. She went to the taxi rank at Mermaid Quay in Cardiff Bay to catch a cab to the railway station – but was refused.

She said: “It was late and we were cold and wanted to get home but when we approached the lead hackney carriage for a lift the driver just said: ‘Four people but no dog.’

Janice, who is blind and suffers from arthritis, protested that he was breaking the law by refusing to take her guide dog in the taxi.

“We were flabbergasted – especially as he had disabled stickers on display.

“But when we pointed out that he would be breaking the law if he refused to take my guide dog he just said ‘Take me to court’, she added.

So she did! Janice contacted the planning and licensing office of Cardiff Council, which took out an enforcement action against the driver and provided a solicitor to take him to court.

Janice was also supported in her action by Cardiff, Vales and Valleys Institute for the Blind, RNIB Cymru and Guide Dogs for the Blind.

 

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Three disability assessors found wanting in attitude and conduct

Three nurses, all involved in assessing the seriousness of people’s disabilities, have been found to have breached professional ethics – all of which have been made public in quite a short period of time.

Just what is going on? People with disabilities deserve better.

First, a disability benefits assessor with extreme right-wing sympathies was suspended by UK government contractor Capita after she posted disablist, racist comments about social security claimants on her Facebook page.

The posts were spotted by Sarah Goldstein, whose claim for personal independence payment (PIP) had been turned down following an assessment carried out by the qualified nurse.

Goldstein has significant support needs as a result of fibromyalgia, Raynaud’s syndrome, chronic migraines, anxiety and depression, and she was so angry and upset by the “lies” she read in the nurse’s assessment report that she searched online for her social media accounts. She says she was appalled by what she found.

On one occasion, in July 2014, while apparently watching an episode of the Channel 5 reality show ‘Benefits Britain: Life On The Dole’, the unnamed nurse posted a series of comments about a Roma gypsy who used a skateboard as a mobility aid because he lost his legs as a child in Romania.

On social media, the nurse commented: “I’d like to remove his wheels and catapult the scrounger back to whatever shit hole he came from!!!!”

Ms Goldstein’s disability has since been reassessed by a different assessor.

NMC_logoSince then, two other nurses have been found guilty of misconduct while employed as assessors by contractors working for the Department of Work and Pensions (DWP). They were both struck off by the Nursing and Midwifery Council (NMC).

Heather Margaret MacBean was found guilty of misconduct by being drunk at work on June 27, 2013, although the Disability News Service reports that it is believed that she was drunk at work on other occasions.

A former health visitor and midwife, MacBean could have carried out hundreds of work capability assessments (WCAs), and it is believed that she also conducted disability living allowance (DLA) assessments.

The second nurse, Amelia Victoria Bailey pretended she had conducted personal independence payment (PIP) assessments for the government contractor Atos.

The company and the DWP have since had to review every one of the assessments Bailey carried out between August and November 2014.

You just have to wonder if these three are just the tip of the iceberg. What revelations may be revealed in the future?

 

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Low fat vegetarian diet looks good for MS patients

How eating meat might possibly affect any disease, let alone multiple sclerosis, was the furthest thought from my mind as a child.

My family, as I was growing up, were all meat-eaters and this has continued throughout my journey into adulthood including one long, but ultimately failed, marriage right up to the current day – almost five years into my second attempt.

I enjoy meat and have always laughed off the scare stories about risks to health. From the mid-1990s to the early 2000s, I was a rural affairs farming journalist in an area renowned for both quality lamb and beef.

Yes, I visited many farms but was able to keep a clear, albeit false, distinction in my mind between animals in the fields and the food on my plate. Lambs could be cuddled but lamb chops were for eating. I carefully avoided visiting the local abattoir, however.

Well, this is now changing, not because of any desire by me to improve my health but because my wife Lisa has started a new anti-animal abuse website called Please – No More! She has uncovered such abuse in terms of the shameful and disgusting methods used in modern factory farming that we have decided to become vegetarians. It won’t happen overnight as we still have meat in our freezer and it won’t help those animals if we just throw it away.

vegiBut once it has gone, it will be gone – and both of us will hopefully benefit from enjoying a meat-free Spanish Mediterranean healthy diet. Right now, Lisa is honing her vegetarian cooking skills. Indeed, tonight we ate a completely homemade vegan lasagna and were both absolutely stunned by the fantastic taste.

Coincidentally, the potential gains to MS patients of a low-fat vegetarian diet have been a topic of discussion for quite some time but without any firm scientific evidence either way.

Now, however a pilot study seems to be saying that such a diet would be beneficial.

A team led by Dr Vijayshree Yadav, at the Oregon Health & Science University, indicates that a very-low saturated fat, plant-based diet, can be a starting point.

The results were published in the study “Low-fat, plant-based diet in multiple sclerosis: A randomized controlled trial,” in the journal Multiple Sclerosis and Related Disorders.

I am not going to go into all the details here but if you are that interested in reading the entire report, just click on the link above.

Although the results showed no effect on MS disease activity, neither in MRI nor clinical tests, improvement was found in quality of life, including overall mood and levels of fatigue, the latter being a debilitating problem among Relapsing RMS patients.

“Dietary intervention participants experienced reduction in weight, body mass index (BMI), LDL (“bad” cholesterol), total cholesterol and insulin levels,” the authors wrote. “These improvements would likely enhance their long-term general health if they remained on the diet.

“If maintained, the improved lipid profile and BMI could yield long-term vascular health benefits.”

 

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HSCT Is a Controversial MS Therapy. Would You Have It? I’ve Decided!

There is little doubt that HSCT is controversial as a treatment, and some even say a cure, for multiple sclerosis. Some talk of great benefits; others feel the risks involved are too high.

Then again, if you look at the side effects listed for the various disease modifying therapies (DMTs), they can be frightening, with death sometimes being one of them.

It’s all a matter of weighing the anticipated benefits against the risks that may possibly affect you.

And, above all, having considered everything, every fact available, you have to remember that the ultimate decision is yours — and yours alone.

Last week, on Multiple Sclerosis News Today’s Facebook page, I let my position be known. I have done my research, I have talked to many patients with different forms of MS who have undergone the treatment, and I have talked with one of the world’s leading doctors who perform the treatment.

HSCT is Controversial: Decision Made

In short, I have made my decision. If medically suitable for it, I am going to put myself forward to have HSCT – autologous hematopoietic stem cell transplant. This is a procedure where a patient’s own healthy stem cells are harvested, then chemotherapy suppresses the faulty immune system. Finally, the healthy cells are reintroduced to build an immune system that does not have MS.

So, on Sunday, Oct. 9, I’ll be flying to Moscow’s A.A. Maximov Center to undergo four days of testing and medical assessment to determine if I am a suitable candidate for the therapy. Of course, there is no guarantee that I will be, but even if not, I’ll be armed with the results of an amazing series of medical tests that, other patients have told me, can reveal other problems that can now be treated.

Dr. Denis Fedorenko
Dr. Denis Fedorenko

I interviewed Dr. Denis Fedorenko, who leads the HSCT therapy team in Moscow, which resulted in me writing three columns here. And it was during our second conversation that I asked whether my irregular heartbeat (atrial fibrillation) would rule me out as a patient. To my amazement he said it was “not, by itself, a contraindication,” but that I’d need to go to Moscow for a thorough assessment.

And that is what is happening in October. My HSCT journey – some may call it an adventure – starts then. Hopefully, it won’t end then as well.

What of the risks? From everyone I have spoken to who has had HSCT, from research involving hundreds of cases, and from the opinions of many (though not all) within the medical profession, I have absolutely no doubt that the possible benefits far outweigh the possible risks.

Conversely, I have never had any form of DMT and, quite honestly, the possible, albeit rare, side effects are just too much to face.

This article was written by me and first appeared in MultipleSclerosisNewsToday.com.

http://multiplesclerosisnewstoday.com/category/ians-blog
Ian Franks
Ian Franks is Chief Patient Specialist and Columnist of Multiple Sclerosis News Today. He enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist Health & Disability blog at www.50shadesofsun.com. 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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Taking care of a partner with a disability can be a labour of love

Perhaps the most overlooked people in the world of disabilities are not the people living with ds abilities but those living with them – the husband or wife who take cares of their loved one.

They are the family carers who devote so much of their lives doing all sorts of things which can include dressing them, feeding them, washing them and even assisting with toileting needs.  And a that, and more, adds up to great deal of hard work.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at te top of the Empire State Building.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at the top of the Empire State Building.

As I have multiple sclerosis, my loving wife Lisa is also my carer. She fastens buttons, puts on my socks, helps me to shower, makes sure I can eat the food on my plate with my one good hand, does all the housework without assistance and takes care of the garden. What’s more she pushes me around in a wheelchair.

Lisa is reluctant to be labelled as a carer, however, saying that she looks after me out of love as my wife. I am sure many husband and wife carers feel exactly the same way.

Each caring situation is unique and carers have many different needs.  They may need information about entitlements, services and individual and group support and social opportunities.  In the UK, every family carer can also undergo a Carers Assessment which could open up many opportunities for them including time out from caring, sitting services and physical help with their caring role.

By joining a carers’ support group, they can socialize with their peers and get help with their entitlements to benefits and services, breaks, education or employment.

And they can get help to access grants and benevolent funds so that they can buy items which will benefit them in their caring role.

Really important, though, carers can join a carers’ support group where they can have a chat and get a chance to meet new friends.

 

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Being defined by disability not by value

Just the other day, I was asked about the sort of reaction people get when their disability gets to the stage that they have to give up a work and then try to get employment that they could manage.

The question I was asked was: “Am I correct in thinking that many people who have to stop working due to their disability end up being defined by their illness rather than the value they can create elsewhere?”

Sadly, in my experience, the answer is a resounding ‘yes’.

Thinking back to November 2006, my condition made it impossible for me to continue doing the job I had at the time. So I decided to seek alternative employment but came against a brick wall – all because I had already been diagnosed with multiple sclerosis.

Not that I was turned down because of my disability. Perish the thought! That would have been illegal in the UK as it is in many countries. You see it would have broken the laws designed to protect those of us with disabilities; protect us from discrimination.

But that, of course, was never the stated reason.

In cases where I was not asked medical questions, I did not mention it. In one case I reached the final shortlist of three before the potential employer gave out medical questionnaires. Answering them all honestly resulted in me being told that one of the other candidates had been given the job.

equal-opportunityThen there were those companies where the personnel department sent out an ‘equal opportunities’ form to be completed and returned with the application form. Ostensibly this is because, they say, they want to ensure that they employ a cross-section of society – including people with disabilities. Strangely, or maybe not, those companies didn’t even offer me an interview.

I recounted this to the jobs adviser I was assigned at the local jobcentre, a part of what is now the Department of Work and Pensions. Her response was to tell me to apply for disability benefit, meaning that I no longer needed to look for work. And, of course, it meant the number of unemployed was reduced by one.

That’s my story and yet similar tales could be told many thousands of times as potential employers only pay lip service to anti-discrimination legislation. And by just being careful not to incriminate themselves they just waltz around the laws.

Well, it’s not quite the end of my story.  I have always fought against being defined by my disability  and now, thanks to Multiple Sclerosis News Today publishing my articles, I have reclaimed my value.

 

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Wondering How MS Will Affect Me Today

Waking up in the morning and facing the world brings a sense of wonder. Not in the sense of awe, just in wondering how MS will affect me today.

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Ian Franks
Ian Franks is Chief Patient Specialist and Columnist of Multiple Sclerosis News Today. He enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist Health & Disability blog at www.50shadesofsun.com. 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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Asda to display invisible disabilities sign nationwide

Two days ago, I highlighted the appearance of a new sign for an accessible restroom in an Asda store in Bristol.

Although staying quiet at the time, Asda has now announced that the ‘not every disability is visible’ sign is being introduced throughout its UK chain of more than 400 mega, super and large retail stores. I wonder whether the idea might be taken up in the US by its parent company Walmart.

On its company website this week, Asda said:

We understand that not all disabilities are visible which is why we’re rolling out new signs for our disabled toilets in more than 400 of our stores.

We want to make sure all our customers feel comfortable using our facilities – including those with disabilities that aren’t always obvious such as Crohn’s disease, autism and Inflammatory Bowel Disease (IBD).

The new signs were inspired by a conversation between our Newark store manager Abby Robinson, mum Tonya Glennester and her five-year-old daughter Evalynn after a recent visit to the store.

asda toilet signEvalynn, who has ADHD and autism, used the disabled toilet but she and her mum became upset when they were questioned by another customer who told them “You don’t look disabled.”

“Evalynn can be affected by the noise of the hand dryer as well as queues and crowds of people,” said Tonya, who is a member of a local autism support group. “It can cause a sensory reaction causing her to become upset or have aggressive outbursts, so the accessible toilet gives us a little more space and privacy.

“When we walked out there were two customers waiting, one in a wheelchair, and they disagreed that I should be using the toilet. I also suffer from health issues that can cause pain, chronic fatigue, bowel pain and balance problems meaning I often have to use the hand rails. We were both really upset and left the store but I decided to speak to the manager because I know there are so many stories like ours.”

Abby, who has just taken over as manager at the store, spoke to colleagues at Asda’s Head Office and it was agreed that new signs will go up in 421 stores over the next few weeks to make them more accessible.

Abby said: “I feel very proud that a simple conversation with a customer and her daughter has resulted in this initiative to raise awareness of invisible illnesses.”

One of the new signs was spotted by a customer at our York Monks Cross store who tweeted a photo. Her tweet prompted praise from charities including Crohn’s and Colitis UK who support people with Inflammatory Bowel Disease (IBD), Crohn’s Disease and Ulcerative Colitis.

Their spokesperson said: “For many people with IBD the sudden and uncontrollable need to use a toilet is a genuine and recognised symptom of their condition. Whilst they may not look ill on the outside they are affected from debilitating symptoms that affect all aspects of their lives.

“Many members of the charity feel that they are judged for using accessible toilets because others perceive them to be well. We are thrilled that Asda will be adopting these signs throughout their stores across the UK and we hope that more businesses will follow suit.”

Tonya added: “I am overwhelmed to see that Asda took my concerns so seriously and have made these changes nationwide. So many people will benefit from this – it will raise awareness and help people understand that you can’t always see someone’s disability.”

 

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