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50shadesofsun

News and Opinions about MS, Health & Disability

Disney Disability Access Rules Don’t Break Law, Court Rules

Living with a disability, in my case multiple sclerosis, and having to rely on a wheelchair to travel further than 15 yards, I am more than a little interested in access issues.

Access concessions for people with disabilities are, in reality, not about giving preference to such people. They are to enable those of us with challenges of one kind or another to be able to participate in something as easily as any able-bodied person.

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Disneyland Resort Theme Park, Entrance to Magic Morning, Extra Magic Hour, California. (Pic: Alamy).

Misapprehension that the access rules should give priority to those of us with disabilities seems to the thought behind legal cases against entertainment giant Disney. The actions claim the company has violated the Americans with Disabilities Act – all because it changed its access rules back in 2013.

Federal courts in both Florida and California have rejected the cases. In the first to be considered, Judge Anne Conway has determined that Disney’s disability access policy does not violate the Americans with Disabilities Act.

Sitting in Florida, she ruled that a man was afforded access on par with other visitors to Disney’s theme parks even if the disability ‘accommodations’ were less generous than he had received in years past.

“Plaintiff was given an opportunity to experience Magic Kingdom in a similar manner as guests that do not need accommodations,” Conway wrote in her ruling.

That seems fair to me. Do we really need to go straight to the front of the line of people lining up? I think Disney have got it right.

Before changing its procedure, Disney had allowed people individuals with disabilities, and everyone in their parties, to bypass long lines for rides.

However, in response to abuse of that system, the company now provides a Disability Access Service Card instead. With the card, visitors with special needs who cannot wait in line can schedule a return time for one park attraction at a time based on current wait times.

One thing that does puzzle me is that to get a card, Disney doesn’t ask for any proof of disability, such as a letter from a doctor. They cite legal restrictions as the reason why. But, whatever they may be, it’s interesting that they don’t prevent the Department of Motor Vehicles from requiring such evidence before issuing a disability parking placard.

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50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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People with Disabilities are Right to Fear a May Victory

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Theresa May, Conservative.

So, the people of the UK are facing a second general election in two years. And people with multiple sclerosis and other disabilities are worried what the results of polling day may mean for them. It could give prime minister Theresa May even more MPs to support her European exit strategy which is likely to lead to reduced benefits.

Mrs May has repeatedly dismissed the idea of holding another election but the fact that she now has one so is no real surprise for anyone with a healthy skepticism towards the honesty and trustworthiness of politicians of any nationality.

By calling an early general election, the prime minister gas gone back on her own statements. Indeed, she has repeatedly refused to call an election earlier than the due date of 2020.

Jeremy Corbyn, Labour.

In the last weeks and months, her spokesmen have maintained her public position that she herself expressed on the BBC TV’s Andrew Marr Show last year, Mrs May herself said: “I don’t think there’s a need for an election. I think the next election will be in 2020.”

When pressed by Marr, May was more direct, saying: “I am not going to call a snap general election.”

No ifs, no buts – just a categoric statement that there would not be early an election.

Tim Fallon, Liberal Democrat.

This week came her announcement. The prime minister went back on her word and called a snap general election to be held on June 8.

Should we be surprised? Of course not, it’s just another politician proving you can’t believe a word they say.

Let’s consider what it means. Of course, all UK citizens will potentially be affected, whether or not they vote. And that’s because the composition of the House of Commons will materially affect the outcome of the Brexit negotiations which could significantly shape their future.

Then there are those of us who are receiving disability benefits. We stand to be affected by the fact that UK laws are likely to be less generous without the EU looking over its shoulder.

Paul Nuttall, UKIP.

The likelihood of a Conservative government in a UK, without EU constraints, is not something that I can anticipate with much pleasure, in fact not with any pleasure at all – but, while I live in Spain, at least I have the right to vote back in the UK.

 

 

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50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Dan Says Treasure Your Caregiving Hero

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Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close*, one man with multiple sclerosis is calling for everyone with the disease to recognize them.

Dan Melfi, who lives in the state of Colorado, is encouraging us all to write a sentence or two on social media paying tribute to our main family caregiver and add the tag #MySupportHero to it.

#mysupporthero

Dan and Karen Melfi.

“My wife Karen is #MySupportHero,” he told me. “She does so much, has learned to understand what I am going through, and means the world to me.”

Although he was diagnosed with MS in 2009, doctors have been unable to pinpoint the type he has. “It seems that I fluctuate between primary progressive and relapsing,” he said. 

Today, aged 65, the former athlete has severe mobility problems. He uses a selection of devices to help him move around: forearm crutches, a wheelchair and a scooter.

Almost nine years since his diagnosis, Dan said: “MS changes your life and of those around you. It’s for life, and it’s tough.

“Support and care is essential.” Sometimes we get down in the dumps, and “need motivation. We have to realize that life’s not that bad, and we need to get going.

“Caregivers need information and resources to help them help us. Karen is #MySupportHero and is happy to attend seminars and to come to doctor appointments with me,” he added.

Of course, every day can’t be a bed of roses. “It’s important that we are not selfish,” Dan said. “Our caregivers are human, too. They have their own needs and must be given time to be themselves.”

He has been on several medications over the years, but he said he got the biggest benefit from a holistic approach. “I keep diseases of aging away as much as possible,” he said. “I watch my diet, exercise regularly, enjoy yoga, I belong to an MS swim class where I can work my whole body without fear of falling.

“Talking of falling, I have found that I can use yoga moves to regain my balance and get up from the floor.” I asked if he took a yoga class. No, he said, he does it at home. “I get free DVDs from abovems.com. They are great.” 

Although he can drive, Karen takes the wheel for a long journey. She does so much else every day, he said.

“She recognizes my cognitive skills are better in morning and get worse as I tire, and she is always ready to get me moving with a metaphoric kick in the butt,” he said.

Any words of wisdom for others with MS? “Yes, don’t be afraid to use mobility aids to help you get about; they can increase your independence significantly. Don’t hesitate to ask for help if you need it. Most people will be pleased to lend a hand. Be grateful when someone does something without being asked. I am always thrilled when someone holds a door open for me.”

And, finally, that hashtag. “Treasure your support hero, write a sentence of appreciation, add #MySupportHero and post it on a social media site of your choice. Job done,” Dan said.

Picture: Dan and Karen Melfi.

* This article, written by me, was first published by Multiple Sclerosis News Today just before the end of MS Awareness Month.

50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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MS ’50shadesofsun’ website is Back in Business

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Thanks to all of you who have taken the trouble to get in touch to ask about my health, and if everything is ok generally. Well, the news is that, although there was a small health issue the week before Easter, I am fine. I realise that your concern was triggered by a lack of posts on this site but that was because I have been so busy, and therefore so tired, that something had to give.

Anyway, the good news is that I am as well as multiple sclerosis allows me to be and this site is back in business.

Back in business: My sympathies

Before I go any further, I want to express my sympathies to the family and everyone affected by the death of Kristen Dyson, of Oklahoma, while undergoing HSCT in Moscow.

I am not going to go into detail here; it is enough to say that Kristen developed an extremely rare heart reaction to an element of the treatment. Despite the efforts of intensive care staff, sadly Kristen passed away.

I did talk to Dr Denis Fedorenko, head of transplants for multiple sclerosis patients at the A.A. Maximov centre, after the news broke on Facebook and it was evident that both he and his team had been deeply  affected. He took the time to explain to me what had happened but I see no need to cause more upset to anyone by going through it in detail here.

Back in business: Ocrevus not welcomed universally

On the ‘latest development’ front, we have seen the news of the approval of Ocrevus (ocrelizumab), by the USA’s Food and Drug Administration (FDA) for the treatment of both relapsing and primary progressive forms of MS. The subsequent reactions have varied from something approaching ecstasy that at last a drug has been approved to treat primary progressive, through guarded optimism to concerns over safety. Many have also expressed the opinion that Ocrevus is no better than Rituxan (rituxumab), which is at the end of its patent life and which can only be used for MS as an off-label medication. Manufacturer Genentech has attracted criticism, whether justified or not, that the two drugs are the same.

Now, although the two drugs are very similar and both work in the same way, there is a difference. Rituxumab is a chimeric antibody, meaning that it was produced from the cells of a non-human organism, actually a mouse, while ocrelizumab is a humanised antibody. Humanised antibodies also come from a non-human species, but whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans.1

I am not going to join in the Ocrevus argument one way or the other; I’ll leave you to make up your own minds.

Of course the FDA decision only affects the USA and the rest of the world continues to wait. In Europe, the European Medicines Agency (EMA) says the approval ‘clock’ has been stopped as it is still awaiting answers to questions it asked last September. The agency says it is waiting for the company to supply the answers. Once it gets them, the EMA’s approval process will be back in business too.

1 Riechmann L, Clark M, Waldmann H, Winter G (1988). “Reshaping human antibodies for therapy”. Nature. 332 (6162): 332–323. doi:10.1038/332323a0. PMID 3127726.   Queen C, Schneider WP, Selick HE, Payne PW, Landolfi NF, Duncan JF, Avdalovic NM, Levitt M, Junghans RP, Waldmann TA (Dec 1989). “A humanized antibody that binds to the interleukin 2 receptor.”. Proc Natl Acad Sci U S A. 86 (24): 10029–33. doi:10.1073/pnas.86.24.10029. PMC 298637Freely accessible. PMID 2513570.  (This is an early example of the use of the term “humanized antibody”.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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