Elvis can’t get in the building…

Last Spring, Bryan and I went to an Auburn University alumni event at the Davidson Center which was built in 2008 to house the Saturn V at the US Space and Rocket Center and is listed on the National Register of Historic Places. It’s an amazing place to be – one of my favorites. Imagine our frustration when we couldn’t get in the building. Sure there’s an elevator once you get inside, but someone had built a fence around the property that required walking down a flight of stairs. Friends from college arrived in time to carry Bryan and then his scooter down the steps.

I don’t know about you, but I don’t really want my friends carrying me. Know what I mean? I’d be worried they’d hurt their backs or get a hernia or break out in a sweat or go home and say, Good gosh that woman weighs a lot. Bryan was a good sport.

Back in 1990, two things happened that raised my awareness of people with disabilities. I became friends with a guy named Robert who had been paralyzed in an accident – and – President George H. W. Bush signed the Americans with Disabilities Act. Robert was really good looking and charismatic – he always had pretty girls hanging on him and a big group of guys laughing at his jokes and stories. He made it all look easy with his modified BMW and a wheelchair ramp into his house which was just off campus and functioned as party central.

By 1993, I was back living in Europe and then spent the next decade traveling all over the world for work and for fun. As I trod down cobblestone streets and schlepped luggage up staircases, I would think about Robert. He had loved to travel and wrote articles for the newspaper reminiscing about his adventures around the world as a Navy SEAL. I felt sad that most of the experiences I was having and the amazing places I was seeing were inaccessible to him.

Fast forward to 2010: My husband’s doctor said the words “secondary progressive MS” and Bryan went from a walking stick to a power scooter in less than a year. I had proudly noted 20 years of progress and change here in the US: wheelchair ramps, accessible restrooms and even [albeit bewilderingly] braille signs on drive-thru ATMs!

Friends, I was so naive.

The ADA is great – it’s better than nothing and it’s a start – but it’s vague and there are loopholes and even the ADA office will tell you it’s enforced via legal complaints and lawsuits that are costly to pursue and difficult to substantiate. Also, the ADA tries to cover everyone – so the person with cancer can’t be fired and the person who is deaf will have an accessible phone in their hotel. It’s the motherload – like restaurants that try to make everything and end up being good at nothing.

When I contacted the US Space and Rocket Center about our experience, they were great. I was invited to consult on needed changes and happily obliged. The changes would be inexpensive… How about handicap parking near the handicap entrance? How about unlocking the gate that blocks the handicap entrance? None of it was hard – but it was so weird that I was the consulting party. Hello!?!? My credentials include a college buddy and a husband who use wheelchairs. And that’s my point: Everyone seems to be winging it and you would be amazed how inaccessible most places are.

On the up side, people are so kind. Truly. The ADA is important, but the thing that we most need to make accessible – and cannot legislate – is our hearts. I think we’re headed in the right direction.

Maybe now Elvis can leave the building…

image via

MS Awareness Week!

It’s MS Awareness Week so I thought I’d share an update on Bryan…

Lots of people have been asking how Bryan has been doing since he began taking Lemtrada, a new treatment for MS, in December. Everyone seems a little unsure of what the Lemtrada is supposed to do, so here are a few quick facts:

What does MS do to you?

Doctors are not entirely sure what MS “is” but the leading theory is it’s an auto-immune disease where your immune system attacks your brain and spinal cord leaving scar tissue that interferes with signals coming/going to your body.

What is Lemtrada?

It’s a chemotherapy that was originally developed for people with leukemia and is now being given to people with MS. It wipes out your immune system which forces your body to rebuild it. The hope is that your immune system will rebuild correctly and stop attacking your brain and spinal cord.

Is Lemtrada a cure?

No. There is no cure for MS – and technically there are no treatments for people with progressive MS like Bryan. The only MS treatments available are intended for people with milder forms of the disease. Lemtrada is intended to slow down or even stop the process of getting worse.

The Man.
(Bryan went shaggy for “No Shave November” and stretched it through December and January!)

What’s it going to do for Bryan?

It will be months or possibly years before we know. Lemtrada works best in people who are young, active and have very little scarring on the brain and spinal cord. Some of those patients have healed! The hope is that it will provide some respite for older and/or more progressive patients like Bryan, too, but no one is sure if it will do anything.

This doesn’t sound all that great.

No one says this to us, but several think it, and we understand! So listen, when there are no treatments and you just go month to month and year to year getting worse – or seeing your loved one getting worse – you get freaking jubilant over the possibility that something might help slow this down. Make sense? It’s the best MS treatment yet. It’s worthy of excitement! 🙂

Tell me some good news.

On Bryan’s last MRI before the treatment, some of his scars had shrunk which seems to indicate that the round of Lemtrada he had off-label at the tail end of the clinical trials is working some magic. Will he feel better, too? Time will tell!

Some life experiences are “growth opportunities” to learn virtues such as patience. This is one of them!!! We want Lemtrada to do something while we wait for stem cell therapies to be developed – that’s the next wave.

Plan B…

My friend Fern has a coin purse that says, “Life is all about how you handle Plan B.” Well, yee-haw… Plan B is in full swing because I got a fever Tuesday night… just in time for Bryan’s entire immune system to get wiped out. We waited three years for this new MS treatment and this is the week I get sick?!? I had to leave Wednesday – not only was I unable to help, but I became a burden on the whole Plan A system that hung in an already delicate balance.

This is bad to admit,  but sometimes I think I’m Atlas – like I can hold up the whole world – or at least my little corner of it. This week, I was reminded that it’s not true, and more importantly, not necessary!!! My parents held down the fort at home with help from our neighbors and church – Bryan’s sister Kathryn went to care for their mom (who has been doing her own chemo for breast cancer) so Bryan’s dad could come stay with Bryan. I haven’t been home yet so as not to contaminate the house. The house is clean but my parents went by to give it a quick Lysol treatment. Bryan gets home today and has to be quarantined for 7-10 days so my brother Steve is going to stay with him until I’m well.

I have been in this chair in my parents living room for 48 hours. Worthless. But it’s fine. Actually, it’s better than fine – it’s pretty great to be reminded how many people love us and how amazingly generous friends and family can be. It’s humbling.

I am sitting in this chair feeling so very grateful.

MS, meet Lemtrada

Today is a very big day for us! As our friends and family know, Bryan had to stop his last MS treatment program in 2011 when he developed antibodies to a fatal brain disease – one of the trickier side effects of an otherwise really effective treatment called Tysabri. It was unfortunately Bryan’s last option because there is so little available for progressive forms of MS.

After waiting more than 3 years, a new drug called Lemtrada just got FDA approval. Today, Bryan became the 10th patient in the US to begin treatment. Lemtrada is a chemotherapy administered for 6 hours a day over 5 days. He repeats this next year and then he’s done. Because it significantly raises your risk of getting leukemia and other cancers, you’re required to do blood work every month for 5 years. I guess that makes it sound terrible, but cancer can potentially be cured and MS cannot, so it’s all about weighing risks.

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 Getting hooked up at 7:30 AM.

 

The good news is that Lemtrada has shown to be quite effective in halting the progression of the disease and in some cases allowing for a little healing! That is huge because it means people who are newly diagnosed will likely never go through what Bryan has been through. That takes my breath away. It’s huge for us and others who have been through so much because it offers hope – and it gets us a step closer to other medical breakthroughs in fighting MS.

*** Learn more about Bryan’s experience with MS here.

Fun with MS

The title of my post is intended to be facetious – just to be clear. Oh, I am just being dramatic. Thankfully, thankfully, thankfully, this year has been pretty uneventful. Bryan has felt crummy this summer, but that’s the ebb and flow of things. The good news is that the FDA has until November to make a final decision on Lemtrada. This is the drug we tried off-label two years ago but haven’t been able to continue because the FDA rejected it. (It was approved by 33 of the other 33 countries who reviewed the trials… ) So if it gets rejected in November, Bryan and I are headed to Canada for treatment. As much as I love Canada, I’d much rather do this here. ***UPDATE*** I found out Canada won’t allow MS patients from the US to come there for Lemtrada so Germany it is!***

Bryan’s neurologist always runs late because he’s a very popular doctor and well known MS Specialist and he gives every patient his full attention. He was 3 hours late for our last appointment! But we’re grateful for all the times he stayed longer with us. Sometimes it’s us. Sometimes it’s you. All the time, it’s worth waiting.

Bryan has begun a monthly steroid infusion in preparation for the Lemtrada (here or Canada). The funny thing is that a home health nurse came by, poked a needle in his arm, handed him infusion bags with steroids, syringes filled with saline and a sheet of instructions for giving himself his own infusions!!! I am not kidding. Bryan and I were clamping down lines and swapping out bags like pros. Who needs a nursing degree when you’ve seen as many episodes of ER and Royal Pains as we have?!?

Seriously, it reminds me of the instructions in a box of at-home hair color.