Birthday presents: True diagnosis and a possible treatment

It was a strange day, well, certainly out of the ordinary!

I am talking about last Friday, November 8, 2019. First of all, it was my birthday (yep, now 67, getting on a bit) but it was also the day I had to see my neurologist for my regular MS check-up. Not the day I would have chosen for the appointment, but it was definitely one I couldn’t forget.

Prior to the trip to see the doctor, I had undergone a new MRI scan, and the full range of blood and urine tests.

The MRI scan confirmed that the lesions in both my brain and spinal cord remain inactive, as I was first told by Dr Fedorenko (pictured, left) in Moscow three years ago.

Laboratory tests on blood and urine proved to be normal – a description of me that my ever-loving wife Lisa finds somewhat unbelievable – with even vitamin D having recovered from ‘deficient’ to ‘sufficient’ with the help of supplements that the Spanish neurologist had previously prescribed.

We discussed my current abilities and disabilities, she asked me to demonstrate my leg and arm movements, and then she said I could have treatment to stop further deterioration but emphasised it would not do more than that.

Hospital Torrecárdenas, in Almería, where my neurology appointment took place,

Wait, what? For the very FIRST time since MS was diagnosed in April 2002, I was being offered a treatment which could slow its progress.

So, what was being suggested? Her first choice was Rituximab but I was unhappy as I know it has a high risk of unwanted side effects. Her second choice was Imurel (azathioprine), an oral medication more commonly used against lupus. I have not started that yet, so we’ll have to see where that goes.

Why such a long wait?

The question that remains is why it has taken more than 17½ years for me to be offered any MS treatment instead of just medications for pain, urine control and the like.

Well, let’s look at that!

Back in 2002, in the UK, the diagnosing neurologist said I had benign MS. Of course, back then I didn’t have the knowledge I have today. So, I didn’t know then that ‘benign’ is not a true type of the disease.

After three or four visits to the neurologist, he referred me to an MS specialist nurse, assuring me that Andy, the nurse, would arrange a neurologist appointment if I wanted one.

Visits to the nurse generally took the form of “why are you here?”, not a great start. Eventually, I asked to see a neurologist again but was told: “You had RRMS (relapsing), now you have SPMS (secondary progressive), there is no treatment, you don’t need to see a neurologist. He can do nothing for you.”

And that was that, except to say that the MS nurse is no longer in that position!

Later, while writing for Multiple Sclerosis News Today, I interviewed Dr Patricia Coyle (pictured, left) for an article for my column in the web-based digital publication. Dr Coyle is the Founder and Director of Stony Brook’s MS Comprehensive Care Center, in Stony Brook, Long Island, New York. She has several decades of experience with nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Anyway, with the interview over, we chatted about MS and she asked me about the symptoms I had experienced along with other probing questions. After all that, and without access to any of my records or test results, I could not expect her to make a diagnosis. However, she said from what I had told her, she believed I had PPMS (primary progressive MS).

That being said, on Friday I asked the question. What type of MS do I have? My neurologist, who does have my health records, replied without hesitation. “You have primary progressive,” she said.

So, it was a day when I finally found out my true diagnosis and was offered treatment for the first time. If not strange, it was certainly an extraordinary day.

50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Pathetic government causes laughter and pity, it’s time to go

Sitting here alongside Lisa, in our home in southern Spain, I watch the political shenanigans in the UK over Brexit with both amusement and pity.

Amusement, because of the knots into which politicians contrive to tie themselves, and pity for residents of the UK who deserve a government that is fit for purpose. Unfortunately, events show that it isn’t.

And that goes much deeper than issues surrounding Europe. Those of us who have disabilities are well aware of this government’s shortcomings.

The latest wheeze of its Department for Work and Pensions (DWP) is to introduce what are referred to as ‘text box tribunals’.

The idea behind it, supposedly, is to make life easier for claimants. Documents available online and use of video-conferencing for benefit appeals would, in theory at least, save claimants from the need to make long trips.

In reality, however, it is about cutting costs, and providing another obstacle for claimants to navigate before reaching an oral hearing.

Steve Donnison, director of Benefits and Work Ltd, explains: “Under the new Continuous Online Resolution (COR) system, soon to be piloted, most PIP (Personal Independence Payment) and ESA (Employment and Support Allowance) claimants who appeal a decision will have their case looked at by an online tribunal panel.

How online panels will operate

“The panel will review all the documents relating to the appeal and will then ask the claimant any further questions they think may be relevant. The claimant is given a deadline to respond to these questions. They do this by typing directly into text boxes in their Tribunals Service account dashboard.

“Once the text box tribunal has all the information it thinks it needs, it gives the claimant its decision.”

Claimants who do not agree with that decision, will still have the right to have their case heard at an oral hearing.

Donnison continues: “The new system will not allow the (online) panel to ask nearly as many questions as they would at an oral hearing.

“It will also not give the panel the chance to meet the claimant and form an opinion about their reliability as a witness. In the vast majority of oral hearings, panels have a high opinion of the claimant’s credibility.

“The success rate for paper hearings is dramatically lower than for oral hearings. Text box tribunal results will almost certainly fall somewhere in the middle.”

That would mean many thousands of claimants will have to endure a claim, a mandatory reconsideration and a text box tribunal before they can get to an oral appeal.

The appeal process was long enough already – now this “easier” online tribunal is just an extra step in the disgustingly long-drawn-out ordeal process.

I fear that not many claimants will manage to cope with it. At least that will be good news for the DWP and the Tribunals Service – just not so good for the rest of us.

This government is incapable of managing anything. Whether it is Brexit, disability benefits, or Universal Credit (don’t get me started), just to name a few,. There is chaos and pandemonium. The government is unable to govern. It is time for Theresa May and her pathetic cohorts to go.

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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

Late night police visit to pick me up

Police on your doorstep late at night is never a good sign. If their business cannot wait until the morning, it must be serious, right?

And, so, it happened. Just before midnight, a car pulled up and two uniformed officers came straight to our house.

No, we had done nothing wrong – they didn’t want to question us… or worse! There had been no accidents involving family or friends – they were not bringing us sad news. So, why were they here?

Well, as silly as it sounds, they had come to pick me up ……. off the floor.

You see, I had slipped while transferring from the sofa to my wheelchair, and ended up on the floor.

Despite continued and varied attempts on my part, I was unable to get up – so called 112. This is the emergency number here in Spain, equivalent to 911 in the US and 999 in the UK.

The operator was attentive, reassuring, and efficient. He listened to the facts, understood I have esclerosis multiple (multiple sclerosis), and, after ascertaining that I wasn’t injured and did not need medical assistance, said help was on the way.

And, just 15 minutes later, two Local Police officers arrived to pick me up. This they did quickly and effortlessly and were both courteous and friendly.

Talking of police in Spain, perhaps I should point out that we have three forces – the Guardia Civil, the Policia Nacional and the Policia Local.

The Guardia Civil (Civil Guard) is Spain’s conventional police force which is organised along paramilitary lines and controlled by the Ministry of the Interior. The Guardia has wide ranging responsibilities for national law enforcement and have the resources, powers and facilities of a normal police force. The Guardia Civil polices rural areas and smaller towns as well as the country’s highways.

The Policia Nacional (National Police) is the urban police agency of Spain. They are under the sole authority of Spain’s Ministry of Interior. Like the Guardia Civil it is a conventional police force, that polices cities and larger towns. It is also responsible for border security and issues residencia certificates for anyone wanting to become a resident in Spain and the essential national-registry identification number (NIE). It also undertakes the security of the Spanish royal family and the government. 

Policia Local (Local Police) is the force that is controlled by the relevant regional or local authority. It does not investigate crime but deals with minor matters. These include parking, local traffic control, bylaw issues, and, of course, picking me up off the floor. 

50shadesofsun.com is back

Hi

This is just a brief note to say that 50shadesofsun.com is up and running again.

I know there has been a lack of posts for a few months, but the site is back in business.

Regular readers will know that I live with multiple sclerosis, an unpleasant, unwanted, degenerative disease. It is oppressive and daunting but I am still the same person, positive and mainly cheerful athough there are times of frustration. But everyone gets frustrated sometimes, right?

The good news is that MS had nothing to do with this site’s short break, read more here.

The site has a new look, is easier to read, and has changed its host to WordPress, so costs have been reduced – which is essential. After all, 50shadesofsun.com is not designed to be a money-earner.

It is an independent site which is totally free of any commercial influences. And it will continue to be just that. I promise.

Freedom of the press, of which digital media is a part, is very dear to me. As such, I will continue to voice my opinions, whether to praise or criticise, to encourage or warn, Whatever they are, my opinions will be honestly held and be fair comment.

Watch this space!

Government gagging clauses attempt to silence critics

“I don’t believe it” was the catchphrase of Victor Meldrew (pictured right) in the BBCtv sit-com One foot in the grave. It signaled his frustration with elements of life today. However, although feeling equally exasperated as actor Richard Wilson’s character, I really DO believe it.

It is another example of overreach, so typical of UK Conservative governments. But believing it is a long way from accepting it.

It is clearly not acceptable that some 22 charities and companies, that are paid government cash, to have had to sign so-called “gagging clauses”. These are said to prevent them from criticizing the government’s Department for Work and Pensions (DWP), its political bosses, and the new Universal Credit (UC) benefit.

The much-criticised UC is being rolled out across the country to replace six means-tested benefits and tax credits paid to working-age claimants. These are: income-based Employment and Support Allowance, Income Support, income-based Jobseeker’s Allowance, Housing Benefit, Working Tax Credit and Child Tax Credit. These are typically paid to people with disabilities and others who are often seen as vulnerable.

News of the gagging clauses were revealed by investigative journalists at The Times national newspaper, in a report last week. Since then, the remainder of the Press has followed suit.

The gagging clauses amount to a disgraceful and repugnant act of censorship that has no place is a democratic society. And the Press’s calls for the clauses to be removed have now led to a similar demand from the main opposition, the Labour party.

Gagging: Call for Commons statement

Shadow work and pensions secretary Margaret Greenwood.

Labour’s shadow works and pensions secretary Margaret Greenwood has critcised the clauses – and called for them to be removed.

In a letter to the Conservative government work and pension secretary Esther McVey,Ms Greenwood has requested (really, demanded) a statement be made to the House of Commons. A statement that, she says, should explain the reasons for the gagging clauses, as well as announce their immediate removal.

She wrote: “I am asking that you come to the House of Commons to explain the original rationale behind these gagging clauses and to publicly announce that they will be removed by the Government.” The full text of Ms Greenwood’s letter can be read here.

I delayed writing about this, in the hope that the government would make a statement and remove the gagging clauses. But now, it’s halfway through the following week and there has been no response to this demand.

Earlier, the DWP had denied that the organisations were banned from criticising UC and said the clauses protected commercially sensitive information.

At that time, a spokeswoman said: “As with all arrangements like this, they include a reference which enables both parties to understand how to interact with each other and protect their best interests.”

 Yeah, right. That response to media  enquiries fails to address the facts, and ignores the issues involved. As if we accept that. Certainly, the Press and Labour’s Ms Greenwood don’t – and nor should they.

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50shadesofsun.com is the personal site of Ian Franks, a digital journalist and former writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Several floors up, fire alarm sounds – but you have mobility problems


Picture the scene. You are several floors above ground and the fire alarm sounds. You have not been informed of either a drill or a test and, so, the instructions are: evacuation.

Just one problem, you have mobility issues. You either use a wheelchair or can on walk down the stairs with great difficulty, in pain, and very slowly.

evacuation

Laura Kolaczkowski.

I was reminded of this situation by an article headlined This is Not  Drill, Maybe written by Laura Kolaczkowski, published by MultpleSclerosis.net. Laura is very well respected within the MS community in the USA. Also, she was one of my top columnists during my time as managing editor (columns) with BioNews. Let’s let her set the scene:

A recent event in a very tall hotel left me wondering why I was so hesitant as to what to do. It happened in Nashville, at the Omni Hotel, which I was staying at for the Annual Consortium of MS Centers meeting. The day I gave a presentation at 7 AM left me tired, and I returned to my hotel room early afternoon to take a brief rest.

I had just dozed off, slipping into a much-needed nap, when the emergency fire alarm rang. At first, I thought let’s ignore the blasting noise of the siren in my room. Perhaps if I pull the pillow over my head I can pretend this isn’t happening. Alternating with the alarm noise was a pre-recorded message ordering me to leave my room immediately and to evacuate the hotel using the closest stairway and a reminder that the elevators would not be operating.

Ignore the warning?

Having worked in schools for over 25 years, I don’t underestimate the importance of fire drills, but this time I was hesitant to evacuate the building. Why would I ignore this warning? Simply put, I was going to have to navigate the stairs, and a lot of them.

My room was on the 22nd floor, and I was immediately cursing my misfortune of having returned to the hotel instead of remaining at the conference, and my even worse luck of having MS and mobility issues. As I lay on the bed listening to the alternating message of pending doom to evacuate immediately and the ear piercing siren, I could only hope it would soon stop and it would be declared a false alarm. Alas, such was not the case, and not wanting to be the headline that read Woman Perishes Because She Ignored Warnings, eventually (as in about five minutes) I did the adult thing and made my way to the stairway and began the long descent to the ground level.

About the only touch of luck in this episode was the stairway was rather narrow, with a handrail on each side that I could grasp with both hands. There were few people in the building because this was mid-day, but most of the few folks who came behind me were kind enough to slow and ask if I needed assistance. Or maybe they just slowed because I had to let go of one of the handrails so they could pass.

No smoke or stampede

Smelling no smoke and not hearing a stampede of firefighters coming up the steps to rescue us gave me confidence that this was not a true emergency. and I told these folks to go on ahead. Telling them I would be fine, but I didn’t mind if I died alone in the stairway because I had lived a full life. A few caught the wry humor, but most were busy saving themselves and just went on their own way.

I remember similar humour a considerable number of years ago. The fire alarm sounded in our office block, but instead of an orderly evacuation, staff members were just standing around looking confused. Someone volunteered the information that we were waiting for admin department to confirm whether it was a real emergency. “Meanwhile, we can all burn to death,” one senior manager commented.

Back to Laura:

I survived the alarms and the stairway but heard from my family afterward that I did the wrong thing. They swear I should have called the front desk and asked for assistance to leave the building. I tend to be a bit more independent-thinking than this and it never occurred to me that there must be evacuation plans and assistance for people with mobility issues.

Lisa and I have enjoyed a number of cruises together and their emergency drills don’t tend to cater for those of us with disabilities. However, we were assured that they have special wheelchairs designed for going downstairs. Great to know they have plans to help the evacuation of people with mobility difficulties.

evacuation

An example of an emergency evacuation wheelchair. (Pic: Stlfamilylife.)

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Some thoughts on making your home wheelchair-friendly

Wheelchairs remain a fear in the minds of many of us who have grown up hearing the phrase “confined to a wheelchair”. While that is not part of our current language about disabilities, a fear still remains about needing to use one.

In truth, however, a wheelchair is a tool that can make our lives easier.

Whether you can propel yourself around in a manual or a motorised chair, one of the most important things to get right is finding the right home – or making changes to your current one. And these changes, or adaptations, must not only make it wheelchair-accessible. They need also to make it easier for us to move about and do things, to live.

Steps and doorsteps are hazards that need to be overcome. Ramps can be built to overcome outdoor steps up to a door.

Talking of doors, it is imperative that all doors inside the accommodation, not just the external ones, are wide enough to navigate and get through comfortably.

Living in a one-floor accommodation is best but if you do have a staircase, not to worry. There are chairlifts that can transport you up and down – you will just need a second wheelchair upstairs.

Decide on the ideal bathroom for your needs

The bathroom is a key area to get right. Here you can choose a walk-in roll-in shower with a suitable seat and handgrips. If you prefer to take a bath, you could use a hoist to get you in and out or, alternatively, a walk-in bath is a possibility. Whichever you choose, don’t forget to include a non-slip floor.

There are a range of toilets that you can choose from. These include those that can wash and dry your nether regions to simple elements that can increase te seat height. Once again, hand grips are important. One more item worth thinking about is a roll-under was basin to make it easier to use.

To make the kitchen more usable, lower or adjustable units are available.

wheelchair

Carpets can make it difficult to move and manoeuvre a wheelchair.

One crucial feature is the floor. I have already mentioned the necessity for a non-slip floor in the bathroom, but you need solid floors everywhere. Carpets, especially deep pile ones, are not wheelchair-friendly. Solid floors make for easier movement and make the wheelchair simpler to control.

There are lots of other bits and pieces that can be changed, such as light switches at lower levels. Mine are all pull switches, but you must make your own choice.

Just remember, as much as we try to avoid having to use a wheelchair, sometimes it is unavoidable. In that case, just keep in mind it is not a prison. a tool, a mobility aid that will make you wheelchair-enabled.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.