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.

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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.

Ocrevus: Counting Down to Expected FDA Approval

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There is now less than a month until the U.S. Food and Drug Administration (FDA) is expected to approve Ocrevus, generic name ocrelizumab, for use as a therapy for multiple sclerosis.

Clinical trials have shown Genentech’s drug to be a promising therapy for relapsing MS and, significantly, the primary progressive form of the disease for which there is no approved treatment.

ocrevusThe FDA is due to make its decision known March 28, which is quite poetic really, in that it is MS Awareness Month.

So, if everything works out, it looks as if Ocrevus, although not a cure, has all the makings of a wonder drug for MS, at least for most people who have the disease. That is because the vast majority of people with MS have the relapsing form, some 85% worldwide are diagnosed with this type..

However, if, like me, you have secondary progressive MS, then it seems Ocrevus will not be available. No claims have been made of Ocrevus having any effectiveness for our form of MS.

All drugs have side effects and this new one is no exception, but it seems that in all studies the most frequent side effects were mild-to-moderate reactions and infections related to the treatment’s injection.

But that is not enough information for me, and it should not be for you. I decided to dig a little deeper.

The UK’s MS Society says that not one of the Phase 3 trials reported any unexpected adverse side effects and in the Phase 2 relapsing remitting trial, serious side effects were rare and were comparable for all groups.

Wait a minute. Serious side effects?

The UK’s MS Trust also says they are rare and adds that opportunistic infections have not been reported in ocrelizumab MS trials.

Furthermore, in his article “Genentech’s Ocrevus: Pioneering The Progressive MS Therapy Landscape”, on Pharmaceutical Online, John Crowley, PhD, of Decision Resources Group, said: Ocrevus’ safety profile in MS program is very strong, but some question marks remain.”

It looks to me that, overall, the Ocrevus story is a very positive one.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian 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.