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.

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. 

Paul’s Moscow HSCT for MS journey begins

I had planned to take a break from writing this month, August being a slow news month that is well known among journalists as the silly season. That’s when minor stories are given major coverage, because of a shortage of stories of real substance.

Paul Morrison and his wife Claire.

However, I could not let Monday August 6 go unmarked.

Why? Because, after months of fundraising, it is the day when Paul Morrison flies to Moscow to undergo HSCT in his fight against MS. He goes with my best wishes for a great trip ad a successful outcome.

I first wrote about Paul’s story here, and since then, he told me last week, the income from his fundraising efforts had reached $45,000.

I plan to catch up with former Londoner Paul after his return to Spain, where he lives just a few miles from me. Watch this space for HSCT news from Moscow and future updates.

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Unless anything happens that I feel must be highlighted, I’ll be back in September.

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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.

Heatwave and MS, is 34C (93F) too much to handle?


It seems that the media generally has become somewhat fixated on the heatwave being experienced in various countries worldwide.

As a native Brit, I am well used to everyday conversations including the topic of the weather. It’s a staple of chat, an icebreaker.

heatwaveAnd, in the UK I left behind, people will be complaining about the heat. “It’s too much,” will be an oft-heard comment. I am sure this is equally true of other countries where people are not used to high temperatures.

The latest news from the UK is that the heatwave is forecast to continue with a high of 34C (93F) expected.

But is 34C that hot? Is it unbearable? While I feel for those who have MS and experience heat sensitivity*, the truth is that places like the UK are just not prepared. They are not ready for winter snow, summer sun, or floods caused by heavy rain.

Be prepared for higher temperatures

Lisa and I moved to Andalucía in southern Spain almost three years ago. For us, 34C is not excessive but a common summertime temperature. Here, we are ready for it. And, in August, we fully expect many days when the thermometer will register highs in the 40sC (100sF).

heatwaveTo us, living in the countryside but just 15 minutes from the Mediterranean, these are just regular summer temperatures NOT a heatwave.

How do we cope? Spain is prepared. Our home has air conditioning. Additionally, we have ceiling fans in the living room, our bedroom and our spare bedroom. Our car has AC too. Although that is not unusual in the UK, as a luxury, here we use it for every trip in the hot weather.

It’s important we are all ready for the temperatures in which we live, so we can enjoy them.

Are summer highs in the 40s, that’s more than 100F, “too much”? Not for me. Even with MS, I enjoy day after day of sunshine. It’s so different from the cloudy skies and rain so typical of usual summer weather in the UK.

*Webmd says that heat or high humidity can make many people with multiple sclerosis experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.

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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.

A helping hand so readily offered to wheelchair-users

I never cease to be surprised by the willingness of people to offer a helping hand.

Regular readers will know that, because of mobility problems resulting from multiple sclerosis, I use a wheelchair.

Several times recently when out and about in my wheelchair, while Lisa stayed at home, members of the public have been read to offer assistance.

It is never strange when store staff lend a helping hand but I really don’t expect it from fellow shoppers – but that is what has happened.

a helping handIn a local supermarket, other shoppers have:

  • Unloaded my shopping cart;
  • Helped pack the goods into the bags;
  • Taken my shopping to my car;
  • Placed the bags into my car.

On Friday, I needed to go to the bank. Not a difficult job in most circumstances, even when using a wheelchair – but it is not so easy in our local town, Cuevas del Almanzora. Here, in sunny Andalucía in the south of Spain, we have to overcome problems associated with accessibility ramps.

Access can benefit from a helping hand

They do exist but the engineers who make them often miss the fact that they are supposed to drop down enough to make a smooth transition from road to sidewalk. Here, the ramps often leave a small kerb (curb in American English) to overcome. Then there are thoughtless drivers who park across the ramp, making it useless.

Of course, there are places where accessibility rams just don’t exist. Outside the bank being one such example. So, on Friday, I chose the lowest possible step up and, by tilting my wheelchair backwards, managed it. But a passing motorcyclist stopped and rushed to help – perhaps unnerved by the awkward backwards tilt. Still, he didn’t leave m side until I was safely in the bank.

Returning to my car after venturing out, it is relatively easy for me to place the wheelchair inside but it does require some effort. And that’s why, I am always grateful when a passer-by offers to help. Yes, I could persevere and complete the job by myself and, more often, it is what I do. However, when help is offered, I don’t want to appear rude by turning down their kindness.

My desire for independence does not stop me accepting offers of assistance. Do you feel the same way?

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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.

Motability faces financial allegations but stands strong against its critics

Shock, horror. Motabilty Operations, part of the Motability charity, is facing allegations about its finances.

The UK organisation provides cars for disabled people who receive the highest level of benefit for mobility. It is accused of having enormous cash reserves and is said to pay its chief executive an outrageous six figure salary.

Extraordinary, we must investigate, say ministers and other MPs. BUT, hold on, what are the FACTS? What is the TRUTH?

The Daily Mail first revealed the allegations in a report published this week. In the Mail Online, the story was headlined “Revealed: Boss of car scheme for the disabled is on £1.7million… and YOU pay: MPs question Motability’s lavish salaries and its £2.4billion cash stockpile”.

Today, it returned to the story, quoting the Press Association saying:

A disability charity faces a double investigation after MPs raised concerns over the “grotesque” state of its finances.

Work and pensions secretary Esther McVey said she has asked the National Audit Office (NAO) to consider probing Motability amid reports it has a £2.4 billion surplus and pays its chief executive £1.7 million a year.

Labour’s Frank Field, chairman of the Work and Pensions select committee, also confirmed his panel would be launching its own “urgent inquiry”.

Allegations rebuffed

I am sure you will agree, if the allegations turn out to be true, it would be disgusting. Profiteering on the backs of the disabled. However, there are two sides to every story and Motability has hit back.

It has issued a strongly worded rebuff to the claims made against it. In its statement, Motability said:

motabilityThe Daily Mail claims there is a £2.4bn ‘cash stockpile’ or ‘spare £2.4bn’.

It’s quite clear to us that the Daily Mail has totally misunderstood what this £2.4 billion of reserves represents. It is not held as cash but is used to buy cars for disabled people. This reduces the amount of borrowing required.

It also underpins the scheme’s financial stability, protecting it from the business risks it faces, particularly in relation to used car values. The Charity Commission has today stated “that we consider the level of operating capital held by the company in order to guarantee the scheme to be conservative”.

Moving on to the issue of the salary paid to Mike Betts, the charity said:

The remuneration of Motability Operations directors is decided by the Motability operations board, based on the advice of their remuneration committee.

Successful and effective

Remuneration is reviewed against the market to ensure that it is both competitive over the long term, and to ensure that any rewards are related to performance especially in relation to the quality of service provided to customers.

The current chief executive of Motability Operations, Mike Betts, has been in place since 2003 and has been instrumental in ensuring the company is able to operate successfully and effectively.

So, we have allegations and a complete rebuff. Now, we will have to wait for the inquiries to be completed and all the facts to be established.

Until then, I’ll give Motability the benefit of any doubt. After all, like anyone else, the company should be considered innocent until proven guilty.

•  Having multiple sclerosis£££, I was awarded the top level of both care and mobility elements of Disabled Living Allowance. I chose to use the mobility element to get a Motability car when I lived in Wales. While I still have the same award, the mobility element is not paid outside the UK and so, living in Spain, I don’t receive it. However, if I moved back to Britain, I would be paid it again.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Christmas, Hanukkah, Yule, or another festival – disabled or not – let’s all be happy

Season’s greetings to one and all, family, friends, neighbours, acquaintances, and all my readers alike.

If you are disabled and find this season a challenge, be sure to pace yourself. As almost 17 years have passed since I received a diagnosis of having MS, I understand it can be difficult. It is easy to get caught up with enthusiastic family members and friends. But, your health matters, so please stay in control and don’t do more than you can manage.

Papa Noel.

This time of year is full of festivities, not just Christmas which, although supposedly marking the birth of Christ, has become a secular celebration. I say ‘supposedly’ because scholars of history say he was actually born in April. Christmas was only put in December by the early church to take over from the pagan festival of yule and the birth of the sun king.

Other holidays that are celebrated widely in December include: Judaism’s Hanukkah, Buddhism’s Bodhi Day (day of enlightenment), and Kwanzaa, which is a Pan-African festival popular in the US.

And here in Spain, the 12th day of Christmas – January 6 – is the main fiesta. It is the Dia de Los Reyes, or Three Kings Day.

Three Kings Day

This is the day that the children of Spain, and other Hispanic countries, traditionally get presents for Christmastime.

While children from other parts of the world eagerly await Santa Claus on Christmas Eve night, children here look forward to the evening of January 5. Then, children leave shoes by the door in the hope that the three kings will leave gifts for the morning. Does that sound familiar?

These days, though, Santa Claus seems to be displacing the traditional Three Kings at Christmastime in Spain. Santa Claus is becoming more common, but even families that choose to embrace “Papa Noel” also tend to wait for the Kings.

three kings

Three Kings parade.

The arrival of the Three Kings on the evening of January 5 is marked throughout Spain. Melchor, Gazpar and Baltasar (the African king) appear in parades through villages, towns, and cities. These also feature floats from which locals throw handfuls of sweets to the children waiting in the streets.

Just as it is traditional for nativity scenes not to include the baby Jesus until Christmas Day, the wise men, or three kings, are added later. The images of the wise men are moved closer to Bethlehem over the Christmas season. They arrive at the stable on the 6th.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.