Category Archives: General Posts

Where are the Handicapped Parking Spots?

It’s nice when a negative experience can be turned into one that’s positive.

I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America, it’s a huge shopping mall just outside Minneapolis, Minnesota. Its promotional fact sheet says that the mall covers 5.6 million square feet, or as much as nine Yankee Stadiums, 10 Great Pyramids, 24 Sydney Opera Houses, or 53 Eiffel Towers.

The Super Bowl was in Minneapolis. Both football teams playing in the Super Bowl were staying in hotels at the mall, and a lot of special events also were scheduled, making the shopping center super-crowded. Because of that, the mall blocked off some parking spots near an entrance.

Among the spots that were blocked were several handicapped spaces. And when this MS patient looked for a van-accessible spot to park, she couldn’t find one. She wound up parking in a standard width spot and exiting the van through its rear door, rather than the one on the side. That meant she had to roll into a lane of moving cars and then drive alongside them to get to the entrance that she wanted to use. When she finally got into the mall and complained about the situation, she says a security guard told her the mall is private property and it can do what it wants. Needless to say, she was upset. Like many of us do when we’re upset, she vented on Facebook:

“Thank you Mall of America for blocking All of the handicap parking spaces and telling me that it was your right because it is private property.”

MOA HC spots 2

After contacting the woman who wrote the post to get details about what happened, I also contacted the PR department at the Mall of America. A spokeswoman told me that the spots were blocked for “safety and security” reasons. They wanted to prevent people from crossing the street between the parking ramp and the mall during an extremely busy time, instead, forcing them to cross using skybridges on other parking levels. The spokeswoman also offered to have an executive at the mall explain this directly to this woman.

There’s a key concept in public relations crisis management called the “Three A’s”: Acknowledge the problem, apologize, and make amends. While hardly a crisis, that’s what happened here. The angry MS patient spoke with a senior vice president at the Mall of America and the result was a good one. “There was more parking on the other side, but you wouldn’t have known that from where we pulled in,” she wrote me in an email. “We talked about placing a sign up next time, saying that there is additional handicap parking here. … He apologized for the response I received Friday night. … We said at the end [that] we all have to work a little harder to make life better for everyone.”

And there’s a P.S. to this story. It turns out that the senior VP’s father has MS. I’d like to be a fly on the wall the next time the father and son have a chat.

(This post first appeared as my column in http://www.multiplesclerosisnewstoday.com)

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A Tough Year to Fight the #Flu

My son and his wife and one of my grandkids have been fighting the flu.

This is not a year to get the flu.

The type of flu circulating in most of North America right now is the H3N2 variety. And, in the words of Helen Branswell in a STAT article she’s written, H3N2 is “the problem child of seasonal flu.”

H3N2 kills more people than any of the other flu varieties. It’s also the toughest strain to protect against. Research shows the flu vaccine, which inoculates against several varieties, is only about 33 percent effective against H3N2. The component in the same vaccine that fights H1N1 flu, on the other hand, is about twice as effective. Influenza expert Dr. Ed Belongia, quoted in Branswell’s article, puts it this way:

“The biggest challenge or frustration is that H3 … for whatever reason, is the virus that we see causing the most severe illness in large numbers of people. And it’s also the virus for which our vaccine is least effective. And so that’s a double whammy that so far we have not been able to adequately deal with.”

The statistics this season bear this out. The Centers for Disease Control (CDC) reports “widespread” flu activity in 49 states. Only Hawaii has escaped so far. As of the final week of 2017, flu claimed at least 211 lives in the U.S. In Australia, where flu season precedes North America by about six months, health officials reported a record number of flu cases.

Flu shots for MS patients?

Last fall, when the North American flu season was just gearing up, I posed this question to my readers: “Flu Shot or No Flu Shot for MS patients?” The response I received on some social media platforms surprised me. Though the majority of people said they had (or would get) one, several answered: “never,” “not me,” or “I got the flu from the shot.” It seems to me this is a dangerous way of looking at a vaccine that saves lives. I got mine in October.

The National Multiple Sclerosis Society thinks getting a flu shot is a no-brainer. Its website says:

“The seasonal flu vaccine has been studied extensively in people with MS and is considered quite safe, regardless of the disease-modifying therapy they are taking. However, individuals being treated with Lemtrada® should be given the inactivated flu vaccine six weeks before receiving their Lemtrada infusion.”

That NMSS webpage is a good source of more detailed flu vaccine information with information related to specific disease-modifying drugs.

Can the vaccine give me the flu?

Doctors say the flu vaccine doesn’t give you the flu, but here’s why some people may think it does, according to the CDC:

  • Other respiratory viruses cause symptoms similar to flu and also spread and cause illness during the flu season. The flu vaccine only protects against influenza, not other illnesses.
  • It’s possible to be exposed to influenza viruses, which cause the flu, shortly before getting vaccinated or during the two-week period after vaccination that it takes the body to develop immune protection. This exposure may result in a person becoming ill with flu before protection from the vaccine takes effect.
  • The flu vaccine can vary in how well it works and some people who get vaccinated may still get sick. That seems to be the case this flu season.

Have you had your shot?

The flu generally peaks in February, so there’s still time to get a shot. You can get one in nearly any pharmacy in the U.S. and, in most cases, it’s covered with no co-pay. If you’re still on the fence, at least hear what your doctor has to say about it.

I’m very glad that I got my flu vaccine again this year, as my wife and I have for decades. I’m really glad that my son and his family all had theirs. Though they’re sick they’re getting better. Their illness could have been worse.

(This is an updated version of a column that first appeared on http://www.multiplesclerosisnewstoday.com)

MS Marketing Study

I’m not familiar with Baltimore Research so I can’t vouch for them. However, this information was sent to me by the folks at Can Do Multiple Sclerosis, which is a solid organization. Since many of you may be interested this marketing research I’m passing it along FYI.

Ed

Baltimore Research has a study coming up that you or someone you know may be interested in. If you know of someone who might be interested, please forward this email to them.

We are looking for 18-64-year-olds who have been diagnosed with MULTIPLE SCLEROSIS (MS).

Those who qualify and participate will receive $150 for their time and opinions.

To see if you qualify, please call our office at 410.583.9991 and reference Project Hazel. You will then be directed to a recruiter who will ask you a few questions to see if you qualify for the study.

Please be assured that we are not selling anything, nor is this for clinical trials or endorsement for any products. This is for market research and we are only interested in your opinions.

Thank you,

Baltimore Research

If You Have MS You Need to Speak Up Now

This came into my inbox today and I think it’s important to pass it along to as many of us with MS, or another chronic disease, in the U.S. as possible. We may never have another chance to stand in the path of these cuts.

Health care ad

Here’s why we’re opposed to this bill:
  • Many families will have to pay higher premiums.
  • If you’re fifty or older, insurers could charge far more than they do now.
  • There are millions of Americans on Medicaid, including children, the elderly, and people with disabilities that would be cut off completely.
  • People with pre-existing conditions could be priced out of meaningful insurance.
  • Americans could face lifetime and annual limits on care.

Speak up now before it’s too late.

Don’t let Congress jeopardize your health. Call your U.S. Senators at 202-224-3121 and/or write to them today.

 

I’m Talking About MS Live on Facebook!

I’ll be live today, Monday April 24th, on the Multiple Sclerosis News Today Facebook page to talk with you about my experiences with MS. I hope you’ll join me at 5pm edt / 9pm gmt and bring your questions.

 

 

The music of MS

[This post first appeared as my column in http://www.multiplesclerosisnewstoday.com]

You may not have heard this song, but I bet its lyrics will strike a chord.

I cannot feel my body.
I cannot feel my face.
My legs are pins and needles
and my mind is a disgrace.
I see in double vision,
so there’s more of you to admire.
Got a freaky disposition
and my soul is on fire.

The title of the song is “Mrs. Hypochondriac,” but singer-songwriter Alu’s symptoms are far from imaginary. Alu, (pronounced AY-loo) has MS. As she explains on her website: “Prior to being diagnosed with Multiple Sclerosis, I had a lot of weird symptoms that doctors couldn’t explain. People often accused me of being a hypochondriac. It was a really difficult time.” She calls the song “a story of survival — surviving a brief tumultuous marriage, divorce, and MS diagnosis.”

Alu was diagnosed with MS in 2012. Not long after that she wrote another song with an MS connection, called “Marie.” It ends:

Oh, Marie.
Life is never what it seems.
You can plan and prepare
but please beware:
Life will humble you.
Life will humble you.
This life will humble you.

Alu isn’t the only performer singing about MS. On YouTube, “Irishbear76” takes a more direct approach:

Possibly the most unique song, and certainly the most positive one that I’ve discovered, was written and performed by Kristen King. “Impervious” tells the story of how stem cell therapy changed her life:

Have you put your MS experience to music? I’d love to hear it, if you’re willing to share. Just drop a link, below, in Comments.