UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

‘I am Cured,’ Says Woman with Aggressive Form of MS After Receiving HSCT in Canada

This article, written by me, first appeared on MultipleSclerosisNewsToday.com

An entry in the comments section of Multiple Sclerosis News Today caught my attention a couple of weeks ago, and peaked my interest. It was a personal tale of one woman’s journey from being paralyzed and told that her condition was “between you and God” to being able to walk again, thanks to HSCT. It read:

I must say from a patient’s perspective that I was the fourth [MS patient given HSCT] outside of the Canadian Trial done with Dr. Mark Freedman and Dr. Harold Atkins.

My life is spectacularly different than before my transplant… I, at my worst, was 9.5 in our EDSS scale of disability. I was sent home to my small town hospital, in Blairmore, AB [Alberta], after the city had done all they were able, to die… I was told it was now ‘between you and God,’ is this what I wanted to hear? Well, at that point ‘kind of so!’ I had been a quadriplegic already with no movement but my head, was this my life until God chose to take me? If it was going to be, death was a great option.

Things instead took an amazing turn and here I am nearing on five years’ post-transplant. I’m alive and well. ‘Well,’ of course, from my perspective — I’m not dead… I have the ability to roll myself in bed, I can feed myself and walk aided, probably always will, but I’m nowhere near where I was before.

My disease has been HALTED!!! I do use the “C word” all the time… I actually named one of my blogs the “C WORD” stands for “Cured not cancer.” I’m so grateful for all those who came before me and excited beyond measure for all those to follow…

That was written by Fiona Fifield, who I contacted at her home outside Calgary, Canada.

I asked her to tell me her story, and how she became one of the few people to have received HSCT in Canada outside the trial conducted by Dr. Mark Freedman and Dr. Harold Adkins, of The Ottawa Hospital and the University of Ottawa. (Watch Multiple Sclerosis News Today‘s exclusive interview with Dr. Mark Freedman at this year’s CMSC.)

Fiona Fifield.

Fiona Fifield.

She said: “It was in January 2010, when I was working as a long-haul truck driver, that I realized that I could not work anymore.

“One day in April 2011, I woke up paralyzed from breastbone down. I was taken to hospital in Calgary where, just three days later, the paralysis got worse, it was then up to collarbone. Despite various tests and diagnosis with MS, doctors could not do anything and so I was transferred to my local hospital in Blairmore, not for treatment but to die. In June 2011 I was on my deathbed. My mom and sister also have MS and my situation was so bad that mom and dad were planning my funeral,” she said.

Turning point

“One of mom’s friends, Anne, had just restarted an MS support group in Blairmore hospital. I went along and that was the turning point in my life. I sat down with Anne this day and told her of my diagnosis of Marburg variant, which in all her 25 years with the MS Society had never heard of.”

Later in June, Anne, of the Lethbridge Chapter of the MS Society, and a friend from the Red Deer Chapter, Lorraine, flew to Montreal to attend a presentation by Dr. Freedman about the completed HSCT trial.

Fiona continued: “At the end of his presentation, Dr. Freedman told his audience that treatment was only available for patients who had a malignant form of MS, known as Marburg’s variant. This is a rapidly progressive and malignant form of multiple sclerosis that usually leads to severe disability or death within weeks to months without remission. This is what I had.

“Anne wanted to talk to Dr. Freedman about me but once the presentation was over, he left by one door while Lorraine, Anne, and the remainder of the audience had to leave by a different exit.

“That evening, the two of them were making their way to a concert and had to stop at a Don’t Walk sign when Dr. Freedman walked up. Anne is not slow into coming forward, so she told him about me. He listened and asked for my papers to be sent to him.

“That led to me traveling to Ottawa in July [2011], where I was told by Dr. Freedman ,‘You are lucky to be the sickest of the sick.’ We at this point flew back home, until we were booked in at the end of August to see [the] hematologist, Dr. Adkins. It was at this juncture that there was a major twist in the program. In the month and a half between visits to Ottawa, I was already back in my wheelchair paralyzed again. They wouldn’t do my transplant unless I was able to walk 100 meters.

“I was then kept in Ottawa, as they knew if I were to return home I would never survive. I was then put on another stronger chemotherapy drug to lower my my immune system once more to getting me walking again, so between [the] August landing and the start of my procedure was a lot more effort yet. We ended up spending eight full months in Ottawa,” she said.

So, how are things going?

“One day, I woke and had never felt so good. This was just a few days after my cells had been implanted. I said ‘I don’t have MS anymore.’ I felt like my old self but it was just that one day,” Fiona said.

“I had physiotherapy and worked hard. We arrived home on April 12, 2012. At home, my partner got me a dog, to make me go outside. Using my walker, I took my beagle out every day. Initially, it was very tiring but it got easier. Then I hired a personal trainer, I fought and fought.

First steps

“I remember first walking with hands in my pockets, climbing a flight of steps for the first time. Sadly, my paralysis comes and goes, but regular physiotherapy twice a week and symptomatic medications help a lot.

“On the EDSS scale, I have improved from 8.5 to 6.0 or 6.5 now. I walk now mostly unaided, but use trekking poles to walk a kilometer,” she said.

Does Fiona think that HSCT is a cure for MS?

There was no hint of any hesitation in her reply: “Oh, yes, absolutely. I am cured of my malignant MS, I would not be here today if I hadn’t had HSCT. When you have a malignant form of MS, like me, it halts the disease even if it cannot repair all the damage. Certain things are better. I had optic neuritis in both eyes, but my eye doctor says both eyes are now clear and that there is not even a scar. And MRI scans show no active disease.”

How does she feel about MS?

“The disease has enabled me to learn about who I am and who people are; I am grateful for what I have been given. Nobody knows what is going to happen to me. So far, I have been given four years I wouldn’t have had. I’ve had friendships that I wouldn’t have ever made.

“I never have the right to be ungrateful,” Fiona said, adding: “I have always done by utmost best not to let my health rule my life; I am not my body.”

Fiona has written a book, “Fiona’s Fight,” about her story.

 

Ian Franks

Ian Franks is Chief Patient Columnist with Multiple Sclerosis News Today. He has 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.

 

No Comments »

Your 10 top tips to deal with MS and other disabilities

10toptipsHere are 10 top tips in lifestyle, home remedies, coping and support to help you handle multiple sclerosis and feel better in your everyday life.

1. Get plenty of good rest

Everybody functions better after a good night sleep. Getting some good rest is even more important to someone who suffers from multiple sclerosis. So to improve your lifestyle, try sleeping at least eight hours a night.

A few years ago, I was sleeping about four hours a night. Nowadays it is up to about seven hours. Most mornings I sleep until I wake up naturally.

2. Exercise

Regular, moderate and simple exercise is a great way to improve your strength, balance, muscle tone and co-ordination while living with multiple sclerosis. If your body temperature is too high and you feel uncomfortable with it, swimming and other water activities involving exercise can be a good option to help you get your temperature back to normal again.

If your MS is limiting you, try some simple exercises like walking, yoga, tai-chi, stretching and stationary bicycling.

I have to admit that exercise and I haven’t got on since my 20s. Yes, it’s good for you but just not for me.

3. Refresh and cool down

Some multiple sclerosis symptoms can get worse when your body temperature rises. When that happens, the best choice is to try and lower your temperature again, using some devices like cooling scarves or vests, and fans and avoiding being exposed to heat and high temperatures.

A steady temperature has never bothered me, just too sudden a change. That’s why moving to the sunny and hot south of Spain has not been detrimental to me. Mind you, we live in a house with air conditioning and ceiling fans.

4. Eat a balanced diet

Results of small studies suggest that a diet low in saturated fat but high in omega-3 fatty acids, such as those found in olive and fish oils, may be beneficial. But further research is needed. Studies also suggest that vitamin D may have potential benefit for people with MS.

Since moving close to the Mediterranean I certainly eat a better diet and get plenty of sunshine to stimulate natural production of vitamin D.

5. Relax and relieve stress

Feeling stressed all the time can make your multiple sclerosis signs and symptoms worse. Try something to relax you, like yoga, meditation, a massage, or even just deep breathing.

Stress and I don’t exist together; never have done. I don’t worry, I just take life as it comes.

6. Maintain your normal and daily activities

It’s really important that you maintain your lifestyle and daily activities as much as you can. Keep a daily and normal routine so your body isn’t subjected to a whole new routine.

Good advice and something I try to do. I try but don’t always succeed.

7. Keep your friends and family close

Surround yourself with people you love. Your friends and family are the best people to have around to make you have a good time and laugh a lot. Enjoying life is still possible, even if you’re dealing with a complicated disease like multiple sclerosis.

Enjoying life is really important to me and it is something that can certainly be achieved despite this awful disease when, like me, you have the love of your nearest and dearest.

8. Maintain your old hobbies and find some new ones

Everyone has hobbies. Some more than others. If you had a hobby before you got diagnosed, don’t suddenly give it up. Keep doing it and if you’re curious about trying some new things, take up a new hobby as well.

This is something that I have managed to do as it involves two things that I can still do, drive and operate a computer – but not at the same time, obviously.

9. Join a support group

Sharing your feelings with other people who are experiencing the same thing can sometimes help you with dealing with the disease. Joining a local support group is an excellent idea, but if there isn’t a local support group you will be able to find on-line groups.

I’d really recommend this one. Support groups can really be great.0 I used to attend regular monthly ‘gatherings’ in the UK.

10. Talk about your feelings and fears 

Find someone you can talk to. A friend, a family member, your doctor or caregiver, someone you feel comfortable with. It’s important that you share your feelings and fears with someone. Don’t keep it to yourself or you can easily become overwhelmed by it all.

My beloved wife, Lisa, is my carer and the person with whom I share all my thoughts.

 

MSNT strapline copy

 

1 Comment »

Processed Foods and Additives May Lead To MS, Autoimmune Diseases

The following article, which I wrote, first appeared on MultipleSclerosisNewsToday.com.

Processed foods have been added to the list of “no-no” items that we are not supposed to eat if you, like me, are unfortunate enough to have MS. We were already warned against gluten, salt and various other ingredients in our diet; now it’s processed foods and additives.

shutterstock_397595314This is because research says that additives commonly used in processed foods can cause damage to the intestinal tolerance and immunity balance. This appears to be a knock-on effect of the food additives seriously harming the tight junctions that protect the intestinal mucosa, also called the gastric mucosa, which is the lining of the gastrointestinal tract.

The immunity balance is important as it works to prevent multiple sclerosis and other autoimmune diseases.

As the incidence of autoimmune disease continues to rise around the world, according to a variety of authorities, so both processed food and food additive industries continue to grow.

Professor Aaron Lerner.
Professor Aaron Lerner.

Professor Aaron Lerner, of the Technion Faculty of Medicine and Carmel Medical Center, in Haifa, Israel, and a lead author of the study that led to this latest warning, said: “In recent decades there has been a decrease in incidence of infectious diseases but, at the same time, there has been an increase in the incidence of allergic diseases, cancer and autoimmune diseases.

“Since the weight of genetic changes is insignificant in such a short period, the scientific community is searching for the causes at the environmental level,” he said.

Avoid Processed Foods

The result of the study: “Changes in intestinal tight junction permeability associated with industrial food additives explain the rising incidence of autoimmune disease,” was published in the journal Autoimmunity Reviews.

Now, I am an MS patient with knowledge of the disease at that level, so there is no way I am qualified to plough through all the technical scientific language. However, I can say that with all the information gathered on this subject, the researchers recommend that autoimmune disease patients, and their family members, avoid processed foods as much as possible.

“Control and enforcement agencies, such as the U.S.A.’s Food and Drug Administration, stringently supervise the pharmaceutical industry, but the food additive market remains unsupervised enough. We hope this study and similar studies increase awareness about the dangers inherent in industrial food additives and raise awareness about the need for control over them,” Professor Lerner concluded.

Anyone for dinner? Nothing processed, though.

 

MSNT strapline copy

 

 

Ian Franks is Chief Patient Columnist with MultipleSclerosisNewsToday.com. 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.

 

3 Comments »

Is this another scam artist? They do exist

Seen on a Facebook multiple sclerosis site yesterday. I have removed the names to protect everyone. However, all the typing errors remain.

Chat Conversation Start

“Scammer” good morning

“Target” gm

“Scammer” am so happy to hear from you did you listen to the news this morning ?

“Target” what news?

“Scammer” Have you had about the new federal government grant our present as place on ground now?

“Target” no, I am in a really bad mood today. I want you to read something I did yesterday.

“Scammer” hello how are you doing today

“Target” I am pretty good, how about yourself?

“Scammer” am good really so happy now and eixtred

“Target” ok. I gotta ask, why the excitement?

“Scammer” i just got money from the federal government free help grant delivered to my door step by FedEx recently

“Target” oh really?

“Scammer” yes really serious about that. hope you got the good news about the federal government free help grant over their?

“Target” nope sure didn’t.

Let's be careful out there. (Picture: youtube.com).

Let’s be careful out there. (Picture: youtube.com).

“Scammer”  oh how come this. this is specifically made for people who need to pay up bills ,buy houses for going to school and ongoing for business for disable and retired people

“Target” oh really? do tell. hey question for you. do you know what tracking a ISP number does?

“Scammer” no i dont

“Target” I’ll tell ya in a minute, tell me about this money you got?

“Scammer” my friend that got the money first gave me the Facebook lawyer link to apply and i got the grant also

“Target” how much?

“Scammer” i got 150,000 delievred to my door step in cash by fedax

“Target” how can I do this?

“Scammer” i will need to give you the fecaebook lawyer link i applied with so you get yours also

“Target” ok, type it out.

“Scammer” here is the facebook lawyer link

Attachment Unavailable

This attachment may have been removed or the person who shared it may not have permission to share it with you.

“Scammer” you have to write him a short message like good day sir i will like to apply for the federal government free help grant sir

“Target” okay, do you want to know what tracking an ISP number does?

“Scammer” yes

“Target” OK, it’s a thing I like to go when I thinnk / know people are running a scam. You see I track your ISP number. That gives me the address you have contacted me from and the name this ISP is registered too. And then I forward that information to my best friend, who works for the FBI, stationed out of New York. From that point he starts an investigation of that line. By the way thanks for being the third scam artist I will have busted this month…LMAO….the FBI will be contacting you soon.

“Scammer” what you saying

“Target” I’m saying I already have passed your information on to my best friend. I’m saying you picked the wrong person to try to scam.

“Scammer” It is a specifically place for those who need assistance paying for bills,buying a home, starting their own business, going to school, or even helping raise their children with old and retired people,This is a new program,

“Target” okay, my brother is with the FBI, you are a scam artrist, I am tracking you internet survice provider as we speak. I will pass your name and address on to him to……God I hate you scam artist. Glad to be able to help get you busted by the FBI. the FBI will be in contact with you with in the next few days. You picked the wrong person tp try to scam.

Comments

“Scammer” Never ever have I had a conversation or chat with you

“Target”  someone just contacted me as you,

“Scammer” You need to stop posting my name on Facebook

“Target”  I tracked their location and passed it on to the FBI already.

“Target” scam artists need to know that they are easy to track and locate

“Commenter 1”  I had one of those…:)

“Commenter 2” Me too

“Commenter 3” Oh Snap! 🙁 Are they getting our names from the 1 or more, of the FB MS sites;…then going down the list/’s? THAT would be “just” like a true scam artist, trying to take advantage; of someone w/ disabilities or the elderly. :-O

End of chat

Whether the quoted text is genuine or not, I cannot verify. Nor am I sure that “Target” is being truthful about tracing the address of the “Scammer” – and his best friend who supposedly works for the FBI suddenly morphed into being his brother.

However, I am aware of scams of this type. So keep alert, don’t be taken in. and remember the words of the sergeant in Hill Street Blues who at the end of his briefing always used to say: “One more thing, Be careful out there.”

 

 

MSNT strapline copy

 

No Comments »

Looks of disdain but I’m not drunk, I have a disability

A few years ago now, my then wife and I travelled back to where we used to live in London to spend the festive season with relatives and was met by looks of disdain by people not understanding about invisible illnesses.

On Christmas Eve we visited the church where we used to go and took part in the midnight service which included the blessing of the crib. Now, we were sitting towards the front of the church and were supposed to walk to the back, in procession, singing as we went. Because that is where the crib was situated.

At that time, I had been diagnosed with multiple sclerosis but was still walking fairy normally although my balance was not perfect. And when I say ‘walking normally’, I already had foot drop and had to think about every step that I was taking.

how good i lookThat’s what many people just cannot understand, just how much effort it takes to achieve that state where they can utter those thoughtless words “Oh, you don’t look ill,” or the equally abhorrent “You’re looking better.” No, we’re not. We might be putting on a good face on the outside but on the inside it’s a different matter.

Anyway, back to the church. And here it is necessary to consider several factors: I was trying to think about walking so that my foot drop did not make me fall; I was walking in a procession and had to be sure not to walk into someone; I was trying to sing, looking at a hymn book; and I was trying to keep my balance. Now those are four things at once and I was never good a multi-tasking, let alone with MS.

Well, the inevitable happened and I stumbled. I didn’t fall but caught myself on one of the pews which moved considerably and noisily before I regained my equilibrium.

People spun around to see what had happened and I noticed a few disapproving looks of disdain from worshippers who had joined the church after we moved away. They had no idea who we were and no doubt thought I’d been enjoying too much of the Christmas spirit, the bottled variety that is – although nothing could have been further from the truth. Not only was I sober, I had not touched a drop.

This was one case of my then invisible illness, my invisible disability, bringing those looks of disdain from people who do not know me or my situation and are too quick to judge.

We meet people like that all the time, don’t we?

 

 

MSNT strapline copy

 

 

2 Comments »

Government bedroom tax pushes more than 57,000 into rent arrears, admits government report

Ridiculous, cruel and an unprovoked attack on people with disabilities and others who are just as vulnerable, the UK government’s bedroom tax1 has led to more than 57,000 households falling into rent arrears.

Who said so? Why, the government itself. But it tried to conceal the report by burying it as one of 300 documents issued on the day that the House of Commons went into its summer recess.

Protests have opposegd the bedroom tax. (Photo: youtube.com).

Protests have opposegd the bedroom tax. (Photo: youtube.com).

In fact, it’s even worse than that.  Besides the 2014/15 English Housing Survey being part of a mountain of paperwork, the figures themselves were only to be unearthed by digging through the survey. Remember, too, that the figures are a year old and, since then, the situation can only have got worse; what’s more they only relate to England, not the UK as a whole.

The Housing Survey shows the horrific number of people who were hit by then work and pensions secretary Iain Duncan Smith’s awful policy.

According to the Mirror Online:

When the survey was taken 364,000 households in social housing were in rent arrears. Another 348,000 had been behind on rent in the previous year.

Among those, 22% (153,800 households) blamed problems or cuts in their benefits.

And 37% of that group (57,485 households) said they had benefits cut for ‘under-occupying’ their home – the hated bedroom tax.

Another 24,000 people in social housing fell behind on rent due to new systems like Universal Credit or the benefits cap.

Figures revealed earlier this year showed the Bedroom Tax is now costing each victim £66 a year more than Iain Duncan Smith’s former department first predicted, when he was in office.

The cost to 442,000 home was around £794 a year, compared to £728 in the official impact assessment dated 2013/14.

The Department for Work and Pensions (DWP) blamed the difference on rent rises over the past two years – but Labour said it proved once again why the tax should be scrapped.

Although I don’t receive housing benefit, I can see that the bedroom tax is unfair and unjustified.

 

1 Officially, the so-called ‘bedroom tax’ is the ‘abolition of the spare room subsidy’, a government reform that reduces housing benefit to anyone with a bedroom more than they are said to need.

 

 

MSNT strapline copy

 

 

 

No Comments »

HSCT Plus Three Months: One Patient’s Journey Toward Recovery from MS

On April 28, this blog carried a post titled HSCT for MS from Russia with Love – Julia’s tale. It was the story of Julia Summers and her trip to Moscow to have HSCT treatment. The following is a continuation of her story; how she is getting on three months after receiving the stem cell transplant. I wrote this post but it first appeared in Multiple Sclerosis News Today. Oh, just one point, on Facebook, Julia Browning uses her maiden name of Summers.

Just over three months ago, one courageous woman had HSCT in Moscow. And I say she is brave not because she chose to have that treatment, but because she has agreed to share her story — and her progress toward recovery from MS — with you through Multiple Sclerosis News Today.

Julia Browning is going to let me tell you about her experiences, starting with her progress in the early months after the April procedure, and coming back to talk about how she is doing at months six and nine, as well as on the first anniversary of her stem cell transplant.

Julia Browning, an MS patient, and Dr. Denis Fedorenko.
Julia Browning during her treatment in Moscow, with Dr Denis Fedorenko.

But, before we talk about recovery, let’s take a look at her life before traveling from her home in the Bahamas to Moscow.

Julia said: “My EDSS was five. I could walk about 800 meters, needing to rest afterwards. I had to hold a rail to ascend and descend stairs and did it very slowly. I had to sit to put on shorts or trousers and struggled with buttons. I hadn’t exercised in over a year because my fatigue was so bad. My balance was extremely bad before Moscow. I had to wear glasses to read. I could no longer hold my camera. I have always done my utmost to hide any bladder and bowel problems, but they were bad before Moscow. I would have daily accidents.”

Yes, relapsing MS was taking its toll. In fact, she has been diagnosed with MS not once but twice.

“I was diagnosed the first time right after my first son was born, I had optic neuritis and no doctor explained MS to me. I was fit, led a healthy lifestyle and ate correctly.  I had no symptoms so I ignored the diagnosis because an MRI did not show anything wrong,” said Julia.

‘A second chance at life’

“After my second diagnosis, I immediately looked into the disease and the treatments and I told my husband and doctor that I wanted HSCT. It was not a difficult decision for me; I did not want to end up being dependent on anyone or be an embarrassment to my family. My neurologist told me not to do it because it was dangerous and not proven. My sons were nervous in case I would die, but they understood my reason for wanting to have it done.”

I asked, “How is life right now?” I wanted to know if her recovery from MS was underway.

She tried to smile but it would not come, because one of her sons needs an operation and her beloved 6-year-old dog, Baxter, is seriously ill. [Update: Sadly, since this was first published, Baxter died. Had a serious heart disease.]

Julia Browning at her home.
Julia, recently, at her home.

“I’m not doing PT like other patients but rather getting back into my old exercise regime,” she said. “I emailed Dr Fedorenko to find out how much I can exercise and if I can cause myself any problems. He has told me I am free to push myself.

“I am currently walking 13 kilometers on a cross-trainer and doing floor exercises, too.  I am starting weights again, which he has advised I can do too. I also cycle — still only short distances because it makes my knees sore.  I have always been an exercise junkie, so will continue to push myself to get back to my pre-MS fitness levels. I also intend to start swimming training after the holidays.

“I no longer require reading glasses. I can ascend and descend stairs with speed and no longer need to hold on. I can jump, which I haven’t been able to do for years.  My balance is no longer an issue. I am able to use my camera again with no problem.

“And I haven’t had any bladder or bowel problems in over two months now. I haven’t had it checked yet but I think my EDSS is now 2.5,” she added. “I am extremely grateful to Dr Fedorenko and his amazing team for giving me a second chance at life.”

What of the neurologist who told Julia not to have HSCT because it was dangerous and unproven? “He is now offering it in the UK,” she said.

 

MSNT strapline copy

 

 

2 Comments »

To cope with serious diagnosis, grieve first

There’s no right way to grieve for the loss of anyone or anything. And that’s true for loved ones, close friends, beloved pets or even your own health when given a diagnosis of multiple sclerosis or some other disabling disease.

In all cases you are affected by grief; it is only natural. Ok, with a disease like MS that is not fatal in itself, you are not sad because of a death but soon after a neurologist gives you the news it’s natural to grieve for the healthy life you have lost.

Experts will tell you that grief is a five-stage process and I am not going to argue with them. However, it is important to realise that we are all different and that there is no right or wrong way to come to terms with a loss like this.

The five stages that I have mentioned are sometimes described slightly differently but, basically, are:

Denial: “No, that can’t be right. It’s not true.”

Anger: “The doctor took too long to diagnose it.”; “It’s (insert anyone here, even God)’s fault.”

Bargaining: “What if I had realised earlier that something was wrong?”; “What if I had gone to the doctor sooner?”; “What if I had lived a healthier lifestyle?”

Depression: “Why me? Why have I got this awful disease?”; “Why can´t I (do this or that)?”

Acceptance: “I may have this disease but I am going to live the best life that I can.”

MS_DiagnosisWhen you first find out that your symptoms and test results add up to a diagnosis of MS, it can be hard to grasp the import of the words.  Multiple sclerosis is a term you have probably heard but don’t know much about; “didn’t Mary have that? She was in a wheelchair.”

In my case, probably because I was relieved to know what was wrong, I skipped the first four stages and went straight to acceptance and then to learning more.

Talking of learning, as soon as you can, and again this is different for everyone, it’s time to find out more about MS and the good news is that there are plenty of sources of authoritative information on the internet

If you haven’t slipped into a black pool of suffering and despair, it’s now time to learn to cope with your abilities.

“Abilities? Surely I need to cope with my disabilities,” I can hear you say.

No, you don’t. You really need to focus on what you can do and how to do it. Yes, of course, remember good times from your past but accept that is now the past. It is now time to look to the present and future without fear but with planning.

For example, if you decide to move, you might want to consider choosing a bungalow or ground floor apartment; you may want to think about a level access. You might want to move to a property that has a bathroom that could be converted to a wet room.

Even if you can walk unaided now, you may want to consider moving to somewhere that could be easily adapted to enable wheelchair access. You may never need it but forward planning is best. An occupational therapist once told me that, when planning home adaptations for someone with a disability, she is not allowed to work on the current level of the person’s ability but has to think what it could be like 20 years ahead.

 

Related posts:

D-Day: MS diagnosed

‘CAN do’ attitude to life

 

 

MSNT strapline copy

 

 

 

No Comments »

Official Advice: ‘Take Vitamin D Supplements’

It is not just those of us with multiple sclerosis, now everyone living in the UK is being recommended to consider taking vitamin D supplements in autumn and winter. And this comes from the country’s top public health advisers.

A government-commissioned report has set the recommended levels at 10 micrograms of the vitamin a day, but officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is as scarce as it is in the UK.

Small amounts of the vitamin can be found in certain foods but most of our vitamin D needs are met by the action of sunlight on our skin. But there is not enough of that owing to the country’s frequently cloudy and depressing weather. Regular readers of this blog may recall that the grey skies were the main reason Lisa and I moved to the south of Spain last year.

vit dNow, an extensive review of the evidence, carried out by the Scientific Advisory Committee on Nutrition (SACN), suggests everyone over the age of one needs to consume 10 micrograms of vitamin D each day in order to protect bone and muscle health.

And public health officials say, in winter months, people should consider getting this from 10 microgram supplements, if their diet is unlikely to provide it.

Foods that do contain vitamin D include oily fish, eggs and fortified cereals.

As far as multiple sclerosis is concerned, the US National MS Society says: “Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS, and studies are underway to determine if vitamin D levels influence MS disease activity. Recent research also points to a possible role for vitamin D in neuroprotection and myelin repair.”

More generally, vitamin D is important because it regulates the amount of calcium and phosphate in the body, which are vital for the growth and maintenance of healthy bones, teeth and muscles.

However, balance is important because both too high a level of vitamin D is as dangerous as too low a level.

Too little can lead to rickets in children – where the bones become soft, weak and misshapen as they continue to grow. And vitamin D deficiency in adults can lead to osteomalacia – which causes severe bone pain and muscle aches.

On the other hand, too much vitamin D can lead to high levels of calcium in the blood which can cause heart and kidney problems.

 

MSNT strapline copy

 

 

No Comments »

Disabilities among party’s top priorities

Never missing a chance to secure more votes, the Republican Party is clearly seeking the support of people with disabilities by including a raft of pro-disability policies among its top priorities. Theoretically, that should be good for everyone with a disability, such as anyone like me who has multiple sclerosis, but what politicians promise before an election and what they actually do if elected are not always the same.

The gop.com website says: “We (the Republican Party) renew our commitment to the inclusion of Americans with disabilities in all aspects of our national life.

Voting-booth usa“In keeping with that commitment, we oppose the non-consensual withholding of care or treatment from people with disabilities, including newborns, as well as the elderly and infirm, just as we oppose euthanasia and assisted suicide, which endanger especially those on the margins of society.

“Because government should set a positive standard in hiring and contracting for the services of persons with disabilities, we need to update the statutory authority for the Ability One program, a major avenue by which those productive members of our society can offer high quality services.

“The Individuals with Disabilities Education Act (IDEA) has opened up unprecedented opportunities for many students, and we reaffirm our support for its goal of minimizing the separation of children with disabilities from their peers. We urge preventive efforts in early childhood, especially assistance in gaining pre-reading skills, to help many students move beyond the need for IDEA’s protections.

“We endorse the program of Employment First, developed by major disability rights groups, to replace dependency with jobs in the mainstream of the American workforce.”

Interesting, no mention of support to maintain social security benefits for the disabled.

 

Here’s the full list of key policies in the Republican platform, as published on gop.com:

Renewing American Values

Preserving and Protecting Traditional Marriage

Creating a Culture of Hope: Raising Families Beyond Poverty

Adoption and Foster Care

Making the Internet Family-Friendly

Advancing Americans with Disabilities

Repealing Obamacare

Our Prescription for American Healthcare: Improve Quality and Lower Costs

Ensuring Consumer Choice in Healthcare

Supporting Federal Healthcare Research and Development

Protecting Individual Conscience in Healthcare

Reforming the FDA

Reducing Costs through Tort Reform

Education: A Chance for Every Child

Attaining Academic Excellence for All

Consumer Choice in Education

Improving Our Nation’s Classrooms

Addressing Rising College Costs

Justice for All: Safe Neighborhoods and Prison Reform

On Tuesday November 8, the same day as the USA goes to the polls to elect a new president, voters will also make their selections for a total of 469 seats in the US Congress. Of these, just 34 are in the Senate. All 435 House of Representatives’ seats are up for election.

 

 

MSNT strapline copy

 

 

 

No Comments »