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News and Opinions about MS, Health & Disability

Norwegian Fjords

 

On the Lysefjord

On the Lysefjord

Since Ian cannot post tonight, I thought I would share with you a blog I wrote about 3 years ago.

There are few things more majestic than a scenic ride into the Norwegian Fjords by boat. First, you pass through little villages, then as the fjords begin to tower above you on either side you see the splendour of what you are there for. This spectacle rises so dramatically out of the water and walls you in with their beauty. As you pass further into these giant natural formations, you come upon water falls flowing into the water and creating pools of foam. Still further into the fjord as the walls at your sides become closer you will not feel that they are closing in on you. You will be in awe with nature. In these waters, you may encounter seals along with goats on the shore. No matter how bad the weather, you feel like you are a part of nature for this portion of your life. This is Lysefjord! On a cliff six hundred metres above you there are hundreds of people looking down on you. Some will climb up this rock named Preikestolen or Pulpit Rock as it is called. As you go further along, there is another formation which appears to be a boulder in between two cliffs. This boulder, named Kjeragbolten – Kjerag for short, rises one thousand metres above the water. There are many adventurers who jump onto this boulder between cliffs. An adventure not to be missed.

Inside Geirangerfjord

Inside passage of Geirangerfjord

Another not to be missed sight is Geirangerfjord. There are two very important ways to see this fjord. First is by boat, second is a tour up the eagle road with its eleven hairpin turns. Try to do both if you have time. Coming along the fjord, as the water narrows, you will pass quaint villages and little hamlets with many brick red homes. You will wonder why you don’t live in one of these homes with so much beauty surrounding you. You will pass by several waterfalls, one being known as ‘the bridal veil’ and one of the other important ones of note is ‘seven sisters’. Both of these falls are quite picture worthy. As a matter of fact, this fjord is so picturesque that it is now a Unesco world heritage site. If you are more into the adventurous feeling this fjord can give you, then make sure you kayak on Geirangerfjord. After you come back out of Geiranger and its beauty, make sure you hop on a bus going up the eagle road. There are many photo spots of the fjord below as you climb by coach.

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Taking the rough with the smooth

In my wheelchair on a better day.

In my wheelchair on a better day.

As everyone affected by multiple sclerosis knows, whether living with it personally or because someone close to you has it, there will be good and bad times. Some may be limited to a day; others can be much longer.

Since forsaking the cloudy skies and rain of Britain for the sunnier and drier climes of the south of Spain, albeit that it is winter here too, I have noticed significant improvements.  I have been enjoying a prolonged good spell with a drastic reduction in both the number of falls and of the amount of time seriously affected by fatigue.

Two days ago, however, it was the start of a bad time. It started with, of all things, a stomach ache but that in no way warned me of what was to come.

After watching me fall asleep in my armchair in the middle of the afternoon and then seeing me fall on the way to the bathroom, my wife Lisa decided it was time for me to go to bed and there were no protests from me. The pain was still there and fatigue had set in. And I don’t mean tiredness; fatigue is so much more than being tired.

I did try and get up later but only as far as my electric wheelchair and, even then, I soon returned to bed.

Yesterday morning, I awoke to discover my stomach ache had gone but, instead, it felt as though there was a tight band around my body – widely known as the ‘MS hug’. I spent awhile on my computer until, trying to get around indoors led to two more falls, resulting in Lisa insisting that I return to bed. Once there, I was soon oblivious to the world.

Today, Thursday, I have only got out of bed to visit the bathroom which, so far, I have managed without falling. My legs seem to be becoming mine again. I am sitting up in bed while writing this. I think that the worst of the fatigue is behind me.

Maybe, just maybe, I’ll try and get out of bed again this afternoon. If I can make it from bed to armchair – on my feet without falling, that would be a major improvement. Not much to ask, is it? Just ask the uninvited guest in my life; ask my ‘friend’, multiple sclerosis.

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New clinic in Mexico to open to treat chronic diseases – but including a very different stem cell treatment

Dr Jose Romo

Dr Jose Romo

There is a second clinic being set up in Mexico that claims it is going to be offering various treatments, including stem cell therapy, at a fraction of the price of Clinic Ruiz.

It is important to realise, though, that the new clinic’s stem cell treatment is not HSCT.

Treatment at the new clinic will be led by Dr Jose Romo who has many years of experience as a physician and has, since his start in conventional medicine, made much progress in the field of holistic medicine specialising in the treatment of many chronic illnesses. Independent research shows that Dr Romo is, in fact, highly qualified and experienced in many areas of medicine.

Starting on March 24, he will be offering a 21-day programme which will include intravenous GcMAF, ozone therapy, stem cell treatment, Papini magnetic therapy among many other methods of treatment.

It shoud be noted that GcMAF, although widely used in the holistic field is controversial in that it does not have the approval of the USA´s FDA and has led to raids by the FDA as well as by UK health authorities.

Placements are limited and the clinic cannot guarantee places to everyone at the moment, however, as the facilities grow, it claims more placements will be able to be offered in the very near future. As every case is unique, all cases will be reviewed following a detailed questionnaire to determine eligibility for the programme that includes treatment and therapeutic measures, but also training and education.

Amanda Mary, holistic health adviser and cancer researcher at the new clinic, La Flor De La Salud (The Flower of Health), says: “Please send me an email if you would like further details. I will be handling all administrative matters as well as questionnaire submissions, so contacting me directly would not only expedite the process, but also ensure your consideration for the program. email mary@mothernatureandyou.com Destination Puebla, Mexico.”

The clinic’s website is http://www.flordelasalud.com/en

For Multiple sclerosis patients, La Flor De La Salud uses cbd oil from the cannabis plant, ozone, B12 intravenous, GcMaf, clean diet and Papimi. A 40% reduction in symptoms is the target. Stem cell treatment is available using donated cells and no chemotherapy drugs. Amanda Mary says: “Chemotherapy is mustard gas, it does not show enough good results with MS.”

Interesting, but I don’t think veterans of HCST would agree.

Requirements for acceptance do not include a history of having taken DMDs but you must not have undergone chemotherapy or radiation within three months and you must have some level of mobility.

The programme is scheduled to begin on March 24 2016. It includes a minimum 14-day stay, up to 21 days, at the facility at a price of €2700 (EUROS), $3000.00 (USD), £2100.00 (GBP). Accompanying guests only pay 40% of the programme fee to cover meals and accommodation. After eligibility requirements are met, 50% payment is required to secure your place.

Price Includes: A healthy meal plan for the duration of the programme; Daily consultations with Dr. Romo or holistic medical adviser, Amanda Mary; Accommodation in a private suite next door to the clinic; Supervising protocols, nursing staff and 24-hour care; and a full training course during your stay as well as full access to the upcoming Online Video Course at healingoracle.

Products for protocols will be billed accordingly and separately from above fee. Once your questionnaire is completed, the clinic will advise on protocols that will be offered and send prices of the products. Although there are charges for the products, administration of those products is included in the price of the programme.

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Madeleine McCann mystery: We may never know truth

madeleine poster madeleine church

Left: A poster issued as part of the search. Right: All smiles from Kate and Gerry McCann as they leave church on Madeleine’s 4th birthday, May 12 2007, just nine days after their daughter went missing.

Strange and unsolved, the case of Madeleine McCann who disappeared from Praia da Luz, Portugal, almost nine years ago has been thrust back into the spotlight by her mother leading a two-week appeal in a bid to get a million people in the UK to register for Child Rescue Alerts.

The free scheme – funded by The Royal Mail – sends early warning messages to mobiles, computers and tablets when a child goes missing. 

Kate McCann said that the alert system, which she helped launch, could have “mobilised” people at the time of Madeleine’s disappearance.

The long investigation into Madeleine’s alleged abduction from the family’s holiday apartment while her parents were out enjoying dinner with friends, has always been controversial. There has been criticism of the handing of the investigation by the Portuguese police, accusations made against possible suspects and thousands of reported sightings from around the globe. Areas have even been excavated. But, during all this, not one concrete fact has ever been uncovered.

All that is definitely known is that Madeleine disappeared and is no longer with her family.

The mystery surrounding the case has brought forth much controversy with allegations of abduction and murder with some accusing Kate and her husband Gerry McCann of being involved in whatever happened to their daughter.

There are social media pages supporting the couple and others attacking them.

Whatever the truth is, Madeleine’s parents cannot be absolved of all blame. The fact remains that her abduction, if that really was what happened, took place while they were eating out with their friends having left their children in bed but without a babysitter or any other form of adult supervision or protection. Many people do not think that was an example of responsible parenting and I have to say that I agree with them.

Then, just nine days after their little girl disappeared, the couple emerged from church and were photographed smiling broadly. That only gave more ammunition to those who believe that they were complicit in the crime.

Regretfully and sadly, we will probably never know the full truth about what happened to little Madeleine McCann.

 

 

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Natural ‘cure’ for MS was patented in USA

 

Dr Michelle Kmiec

Dr Michelle Kmiec

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Did you know that there is a US government approved patent for a natural ‘cure’ for multiple sclerosis? Yes, it’s true. The patent includes niacin, otherwise known as vitamin B3, and was granted in 2004.

That’s right, this supposed cure has been around for 12 years.

Nowadays, along with other vitamins such as Vitamin D, Vitamin B1 (Thiamine) and Vitamin B12, Niacin is getting more attention regarding its effects on multiple sclerosis.

Now most people who know anything about MS must be aware that it is a neurological disorder and certainly understand that disability is common in those diagnosed – even if many people with the illness have what we term as invisible disabilities.

As with nearly all disease, modern medicine still does not know the mechanism of how the disease develops in the first place. They only know the effects. Thus, the creation of the multitude of disease modifying drugs that only seek to slow the progress of what is labelled as ‘incurable’.

Now, there are those who maintain that all disease stems from nutrient deficiencies and one of these is Dr Michelle Kmiec, a chiropractor who also holds a Bachelor of Science degree in Human Biology. She is life-long athlete who claims to have cured herself 100% naturally from MS and anxiety before becoming an avid nutrition health researcher/promoter.

She says:”My premise is that all disease is a deficiency of some nutrient (or many) and/or stress induced. Naturally, stress is a major cause of deficiencies so around and around this cycle of disease we go.

“Luckily however, the idea of ‘incurable’ is not within the premise of the holistic model of thinking!

“Currently, there is much research being done as to certain nutritional deficiencies and how that relates to MS. Some of the more popular research is regarding Vitamins D and B12.  However, there are others that are gaining more steam and fast becoming treatments for this disease as well.”

She continues: “Furthermore, the idea that a single deficiency causes multiple deficiencies is even starting to gain some attention by the medical profession. Since the human body relies on its biological functions to work in conjunction with one another, the idea of ‘holistic’ medicine is gaining more popularity among the general public. People are simply getting tired of the never-ending drug solution to everything!”

As far as the 2004 patent is concerned, Dr Kmiec says: “As part of the high-dose vitamin therapy, it includes total dosages of 1000 mg of niacin broken down in separate dosages.

“It is the ‘flush’ part of the treatment that is important in order to expand the capillaries, flooding the body with much needed nutrients. Many doctors believe that this is vital for the rebuilding of the damaged myelin sheath, which is the reason why MS is such a potentially debilitating disease.

“Why isn’t this information common news among medical doctors and MS patients?” she asks.

 

FACT FILE

(Edited by Susan Hartman, Co-Founder and Content Editor of The Triad of Life, Inc.)

Vitamin B3 (Niacin) is a water-soluble vitamin that can be synthesized in the body from the essential amino acid tryptophan with the aid of vitamin B6. However, the conversion from tryptophan to niacin isn’t very efficient because it takes 60 mg of tryptophan to produce 1 mg of niacin.

Why do you need Vitamin B3 (Niacin)?

Niacin (Vitamin B3), also known as nicotinic acid, is often confused with niacinamide, although technically, they are both vitamin B3.

Niacin is vital for over 50 different processes in our body. As with all ‘B’ vitamins, niacin works closely and in tandem with other B vitamins, especially vitamin B2 (riboflavin) and vitamin B6 (pyridoxine).

Niacin is an essential vitamin mainly due to its many enzymatic functions. Some of the more important roles of niacin are as follows:

  • Cell respiration
  • Aids circulation
  • Controls cholesterol
  • Protects cells and tissues from damage due to free radicals
  • Aids with the proper functioning of the nervous system
  • Lipid production and regulation
  • Synthesis of sex hormones
  • Normal bile secretion
  • Proper functioning of stomach fluids
  • Carbohydrate, fat and protein metabolism
  • Helps control blood glucose level
  • Promotes Healthy Skin with vitamin B2 (riboflavin) and vitamin B6 (pyridoxine)
  • Promotes normal Digestion with vitamin B2 (riboflavin) and vitamin B6 (pyridoxine)

Conditions related to Niacin deficiency

  • Pellagra
  • Schizophrenia
  • Insulin-Dependent Diabetes Mellitus (IDDM)
  • Insomnia
  • Alzheimer’s disease
  • Alcoholism (the leading cause of niacin deficiency in the United States)
  • Coronary Heart Disease
  • Bleeding gums (Gingivitis)
  • Arthritis
  • Protection against cancer
  • Cataracts with vitamin B2 (Riboflavin)

Dosages

Typical niacin dosages range from 100 mg to 3000 mg, with the higher end being in the therapeutic range.

In some cases, niacinamide is used when people are concerned about or unable to tolerate the flushing effect. Also, those who have Insulin-Dependent Diabetes Mellitus (IDDM) are often told to use niacinamide instead.  However, more recent studies are now showing that niacin may be safe even for those individuals.

Niacinamide is NOT as effective as niacin in lowering cholesterol. However, both niacin and niacinamide are equally as effective in treating other conditions such as pellagra, schizophrenia, arthritis, and autoimmune disorders.

For some, niacin is used as a means of detox. For more information, please see niacin for detox.

Toxicity

Niacin, even at high doses, is very safe.  Besides the harmless flushing effect, few, if any, side effects have been reported.

In some cases however, there is the potential for the elevation of liver enzymes and liver damage. This condition is very rare and most commonly occurs when taking timed-release or extended- release preparations of niacin. (Some people prefer these niacin options to avoid the flushing effect.) Even with the timed-release or extended- release preparations of niacin, high doses of 1500 – 3000 mg can be achieved, and maintained, for long periods of time.

Anyone contemplating high dose niacin therapy should have their liver enzymes checked within several months of achieving therapeutic levels (1,500-3,000 mg), especially when using niacinamide and extended release niacin. If you have any concerns with using high doses of niacin, simply ask for a blood test to determine your liver enzymes. Chiropractors, medical doctors and most naturopath doctors can order lab tests (dependent upon the law of the state you live in).

What is important to understand is that with any supplement, complications or side effects usually occur as the result of an imbalance elsewhere in the body. For example, Vitamin A, in the form of retinal, gets an unmerited “bad rap” for being highly toxic at doses above 5000 IU. But the truth is that often Vitamin A supplementation is done incorrectly. Vitamin A requires Vitamin D much like calcium requires magnesium in a specific ratio. When this balance is disturbed, side effects may occur. Instead of advising individuals to keep Vitamin A levels to a minimum to avoid toxicity, the public should be educated as to the importance of maintaining the correct ratio of Vitamin A and Vitamin D. The same is true of calcium and magnesium.

With that in mind, niacin, being part of the “B” family, works best in conjunction with all of the other B vitamins and Vitamin C. A B-100 supplement is recommended.  This simply means that most of the B vitamins in the formula are 100 mg, with the exception of vitamin B12 and folic acid (Vitamin B9) as those require a different ratio so as to be in balance with the other B vitamins. In most cases, any side effect of niacin, aside from the flushing effect, could be prevented by taking it in conjunction with the other B vitamins.

 

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Government wages ‘disability war’ on benefit claims

dwp logo 

ids

For those of you outside the UK, as I am now, it must be difficult to understand what is happening there with government policies seeming to be continually targeting disabled people including those with multiple sclerosis and all other physical and mental disabilities.

Well, it’s true. It is easy enough to find news stories about various different policies striking at yet another aspect of life of those least able to contend with it.

Now, I want to make it absolutely clear that every reader of this post fully realises two things. Firstly, this is not being written from a political perspective as there are good and bad policies of all parties; and none match my beliefs entirely. Secondly, there is no element of sour grapes involved as, so far at least, the British government’s welfare cuts have not affected me.

And the key words to the whole problem affecting the UK are ‘welfare cuts’, the implementation of which has now degenerated into what should be termed the ‘disability war’.

From the government’s point of view, faced with a huge budget deficit when it first came to power in 2010, it introduced a massive programme of spending cuts across all departments.

One of these, the Department for Work and Pensions is headed by former, failed Conservative leader Iain Duncan Smith, pictured above. Its responsibilities include the administration and payment of welfare benefits including those for the unemployed and those with disabilities. IDS was appointed to head the department with a remit to cut welfare spending.

Basically, most of his actions have centred on two areas – besides state pensions that are another matter completely.

Unemployed people used to be able to claim a benefit called Job Seekers Allowance while those unable to work through sickness including disabilities were paid Incapacity Benefit. Well, in a supposed cost-cutting exercise, both of these were gradually replaced by Employment Support Allowance but, within that, it is divided into the Work-Related Activity Group, for those judged able to work, and the Support Group, for those unable to work.

People with disabilities who were previously paid Incapacity Benefit had to complete a lengthy application form and, in many cases, go through a face-to-face medical assessment, in an attempt to gain the new ESA. The problem is that many were assessed as fit to work – a decision that has time-and-again been reversed on appeal.

Completion of the introduction of the new benefit has been seriously delayed and has cost the country so much in terms of money and goodwill.

Another benefit being replaced is Disability Living Allowance. This does not depend on ability to work but by an individual’s abilities and disabilities – and not only physical. Now everyone being paid DLA, even those already granted a lifetime award, are gradually being required to apply for the new Personal Independence Payment.

Once again, all is not going well for the claimants, many of whom have lost some or all of the benefit, while the government’s own timetable for completion of the transition makes the worst bus and train timetables look perfect.

And that does not even touch the introduction of the so-called Universal Credit. That’s another mess.

 

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Naturally occurring protein could lead to myelin repair

thymosin lab

An American pharmaceutical company claims to be developing a process that has promoted remyelination in two animal models ‘commonly used’ for multiple sclerosis research. Details of the process using Thymosin beta4, which is a protein that occurs naturally in the human body, were published in Neurobiology of Disease.

RegenRx Biopharmaceuticals Inc, based in the US state of Maryland, is a clinical-stage drug development company concentrating on tissue protection, repair and regeneration. It believes Thymosin could be developed as a therapy for multiple sclerosis and other demyelinating neurological disorders.

I suspect few but the most determined people would persevere when faced with an article headed, and I kid you not, Thymosin beta4 promotes oligodendrogenesis in the demyelinating central nervous system.

Ok, well, let’s just say some of us are made of stronger stuff than others. That is my excuse and no going back now.

Now, all of us who have MS know that our illness is the result of our immune systems attacking and damaging the myelin that protects our nerves, rather like the rubber that surrounds electric wires. For the more technical, myelin is a lipidic material that protects the nerve fibres in the central and peripheral nervous systems.

Now that long word in the scientific title comes from the fact that myelination, the process of myelin formation around neurons, is carried out by things called oligodendrocytes in the central nervous system. The article says: “These mature cells do not have the capacity to replicate, so once they are destroyed the only way to reinitiate myelination would be to recruit or generate oligodendrocyte progenitor cells (OPCs). These precursor cells may then proliferate and differentiate into myelin-producing mature oligodendrocytes.”

As I said above, destruction of the protective myelin is what MS is all about. It leads to the slowing down and even failure of messages being sent through the nervous system – something that researchers and doctors call progressive neurodegeneration and synaptic failure.

Despite the existence of several disease modifying medications (DMDs), at present there is no effective remyelination therapy.

Researchers from the Departments of Neurology and Biostatistics and Research Epidemiology, Henry Ford Health System in Detroit, and from the Department of Physics at Oakland University in Rochester, worked on the project.

They demonstrated that: ‘Thymosin beta4 (Tβ4) is an effective remyelination therapy, able to promote proliferation and differentiation of OPCs into mature, myelin-producing oligodendrocytes, while also decreasing axonal damage.’ The research team also observed that the epidermal growth factor receptor (EGFR) contributes to the process.

Two animal models widely used in MS research were used in the evaluation stages. These were the experimental autoimmune encephalomyelitis (EAE) and the cuprizone diet models. Both showed: ‘the improved rate of remyelination and mature oligodendrocytes generation significantly correlated with functional improvement in the mice.’

The researchers concluded these findings of this pre-clinical trial indicate that:

1)      Tβ4 increases proliferation of OPCs and the maturation of OPCs to myelinating oligodendrocytes which in concert, likely contribute to the beneficial effect of Tβ4;

2)      Epidermal Growth Factor Receptor upregulated and activated by Tβ4 may mediate the process of OPC differentiation;

3)      Tβ4 could potentially be developed as a therapy for MS patients, and for other demyelinating neurological disorders.

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Breastfeeding is so natural and so needed worldwide

breastfeeding

Numbers of mothers breastfeeding their youngsters vary widely throughout the world and particularly when you look at those still breastfeeding after 12 months.

While breastfeeding is popular in places like Senegal, Gambia and Ethiopia, in other countries such as the USA mothers are more reticent but in the UK they are positively backward as, according an international study, that country has the lowest rate in the world.

Yes, that’s right- the worst. The study, published in the Lancet medical journal, says that only one in 200 women – or 0.5% – is still doing any breastfeeding after baby is a year old.

Compare that with 23% in Germany, 27% in USA, 56% in Brazil and 99% in Senegal.

The results are blamed on a ‘widespread misconception’ that breastfeeding is beneficial only in poor countries. It is, indeed, far more common in developing countries but the UK figures trail behind everyone.

So, how long should mothers feed their youngsters naturally?

Well many health bodies, including the World Health Organization (WHO), recommend using only breastfeeding for six months with no other foods or drinks other than vitamin D are being given. After that, partial breastfeeding is recommended until at least one year of age.

In the UK, mothers are advised to feed their babies on breast milk alone for the first six months and then a combination of breast milk and other foods. Interestingly, though, that advice does not give a recommendation as to how long they should continue.

Maybe that is why 81% of UK mothers had tried breastfeeding at some point but only 34% were breastfeeding at six months and  just 0.5% at 12 months. Meanwhile, across the Atlantic, 79% of US moms tried it, 49% were still there at six months and 27% made it to the year mark.

One of the report’s authors is Prof Cesar Victora, from the Federal University of Pelotas in Brazil. He said: “There is a widespread misconception that the benefits of breastfeeding only relate to poor countries. Nothing could be further from the truth, our work clearly shows that breastfeeding saves lives and money in all countries, rich and poor alike.”

The Lancet stated that breastfeeding in developed countries reduces the risk of sudden infant deaths by more than a third while, poorer ones, breastfeeding could halve the number of cases of diarrhoea and cut respiratory infections by a third. Overall, the report’s authors said that near-universal breastfeeding could save more than 800,000 children’s lives every year.

Both Save the Children UK and the World Health Organization are critical of formula milk being promoted at the expense of breastfeeding. In a joint statement they say: “The active and aggressive promotion of breast milk substitutes by their manufacturers and distributors continues to be a substantial global barrier to breastfeeding.

“Promotion and marketing have turned infant formula, which should be seen as a specialised food that is vitally important for those babies who cannot be breastfed, into a normal food for any infant.”

breastfeeding signSome other people’s attitudes to breastfeeding in public are also cause for concern with many mothers reporting instances of being told to cover up or to breastfeed in private – often in the face of their legal right to do so in public areas. This sort of experience can surely lead many women to give up breastfeeding altogether.

This reminds me of an incident I witnessed in a café a few years ago. A mum was breastfeeding quite modestly while seated at her table when one middle-aged man objected and, when she refused to stop, complained to the manager – a young man in his early 20s.

To this day, I have never forgotten what happened next. The young man listened to the customer’s indignant complaint and then said calmly and with a dignity that belied his age: “Sir, I understand that you are not happy but if a mother feeds her baby naturally and you don’t like it, I suggest that you don’t look. If, on the other hand, you find that is not a satisfactory way to resolve the matter, I must ask you to leave as your continued complaints are disturbing other customers. Breastfeeding will be allowed while I am manager here.”

This was met by applause from the other customers, leading to a swift exit by the man and his wife. He was muttering about complaining to the owner.

The following week, I happened to be in the same café again. This time, the owner was there and we talked about the way his young manager had handled the problem. “Oh, I have great faith in James,” he said and pointed to a new sign on the wall. It was official, issued by the local health authority, saying ‘Breastfeeding welcome here’.

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Royal Caribbean cruise ship Anthem caught in storm but don’t panic, Captain Claus is so cool in command

Captain Claus Andersen with me on board Anthem of the Seas while crossing the Atlantic last year.

Captain Claus Andersen with me on board Anthem of the Seas while crossing the Atlantic last year.

News that Royal Caribbean’s cruise ship Anthem of the Seas was hit by a bad storm with hurricane force winds and huge waves on its current trip took me back to Lisa’s and my time aboard that very ship last year.

We sailed from Southampton in late October and docked in Bayonne in early November, having just enjoyed a nine-day crossing of the Atlantic Ocean.

It was the latest in a series of voyages that we have taken since the UK Multiple Sclerosis Society gave us a grant of £1200 to go on a two-week cruise in 2013.

Last year’s trip was the ship’s major relocation journey to its new home port in New Jersey.

That cruise experienced bad weather too. We went through two storms separated by some 100mph winds. There were huge waves too. At one point, while enjoying a meal in one of the ship’s many restaurants, we could see waves reaching the top of the windows.

Distances are so far on board a ship that they are well beyond my walking ability, so I have to rely on my wheelchair but, having a left-side weakness because of my MS, Lisa has to push me. Not that she minds, joking that she enjoys ‘pushing me about’.

Yes, it was a bit rocky for a couple or three days but nothing that the ship or its crew could not handle. However, for Lisa it was more difficult as normally level floorways could suddenly become uphill, downhill or even have a sideways slant. Still, we managed it without incident.

Throughout the rough seas, the calmness of all on board was personified by the ship’s master, Captain Claus Andersen, who exuded confidence and control.

Anthem of the Seas.

Anthem of the Seas.

At one point before encountering the first storm, he was addressing passengers assembled on the Esplanade. He asked if they thought the trip so far had been calm or rough. Having got a chorus of replies of ‘calm’, he said with a smile that, in that case, we could look forward to some variations of calm in the next few days.

Every day, Captain Claus (which he pronounces ‘Close’) went on the ship’s TV channel with the cruise director to look at the weather ahead. It was all explained easily and very clearly.

I had an opportunity to speak with the captain and asked him how much time he actually spent on the bridge, bearing in mind he has a team of experienced officers there. He explained that the job of captain was so demanding that, in fact, very little of his time was actually spent there. However, he agreed that during stormy weather, that was exactly where he was. That was where he needed to be, he explained.

During the storm that hit the ship this time, I am sure that Captain Claus remained as calm and in control as he was when crossing the Atlantic last year. He is a credit to not only himself but to Royal Caribbean too.

Also, in response to the captain’s decision to curtail the cruise and return to port, I have to commend the cruise line’s very speedy decision to refund all passengers 100% of the cruise ticket price plus give them 50% off the cost of their next cruise.

Well done, Royal Caribbean.

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BBC Panorama was about treatment of just four patients – not for-and-against HSCT

Please note: As with all posts on my 50shadesofsun.com blog, all opinions are mine. Usually, I leave that unsaid but on this occasion I want it clearly understood that I am speaking for myself – not for any Facebook group nor anyone else.

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How dare the Barts MS blog criticise the journalistic integrity of the BBC Panorama team or any other news team, for that matter, over how they treated the HSCT treatment at Sheffield?

And then to ask, albeit with tongue firmly in cheek, “Should we create the equivalent of the Ig-Nobel prize for irresponsible journalism?” is downright insulting.

Just what do the writers of the Bart blog post ClinicSpeak: reflections on HSCT after the fallout of the BBC Panorama programme know about journalism? Not a lot in my opinion – as someone who is a journalist by profession.

As far as the other points made in the blog are concerned, I must point out that I have absolutely no medical training – but I do have MS, epilepsy and a cardiac condition.

There does not seem to be anything new in the blog; they have said it all before and the fact that Panorama did not go into the downsides of HSCT is irrelevant. It was not scientific paper, nor was it a programme about the pros and cons of the process – it was a news story about the treatment and progress of four patients who had chosen to have it. And that is what journalism is all about. It told the story in an accurate and responsible manner – it is just that those at Barts would have preferred a different story altogether.

What’s more, if they want to compare HSCT with drugs, that discussion needs to include the dangers of those drugs too, of which there are plenty.

As someone who lives with MS, I think the Barts blog piece, posted on February 8, was highly patronising in that the writers seem to assume that patients aren’t interested in the long term risks, just the immediate ones. I have not had HCST, nor applied for it, but I think that if it works for some, then it is good. There are risks but these, both short and long-term, are discussed with each patient before he or she is accepted for treatment.

As far as the benefits are concerned, the people at Barts are also patronising if they think patients with extensive MS damage expect it to be reversed by HSCT, rather than progression halted with no other gains. Stopping the progression is good enough. Those extra gains are really only achieved with early MS – and patients know that!

And, while I am about it, what is it with neurologists’ attitudes? They seem to think that they should have the right to decide what is best for every individual. They think, and I am aware that this is a sweeping generalisation, that they know best and pay little if any attention to the views of patients themselves. They are the professionals and don’t need to considering patients’ views about their own treatment – well, that is exactly what they should do.

We are more than MS statistics, we are more than patients. We are PEOPLE, with our own views and opinions – and our own rights – about what happens to us.

Gwen Higgs – an update

In a comment received after my blog on Monday, one reader asked if there would be a part 3 about what Gwen’s neurologist thought about the HSCT she’d had in Moscow. So, I asked Gwen.

She said: “That would be an extremely short blog entry. I have only seen my neuro once since I came back from Russia eighteen months ago. That was a routine appointment which happened to fall a couple of months after I arrived home, so I was still bald. She showed absolutely no interest whatsoever.”

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