Progressive Talk

Posted on March 28, 2018 by MSAA

By Doug Ankerman

The word “progressive” brings to mind images of broad, dynamic thinking.

Progressive is fresh. Progressive is modern. Progressive is revolutionary in every aspect.

Progressive was NOT me in any way, shape or form.

Just look at me as a kid. Absolutely nothing progressive. Big ears. Big head. Eddie Munster hair. Shy. Backward. Sucked my thumb till I was eight-years-old.

My progressive aversion continued well into adulthood till finally being tagged “Secondary-Progressive” years into my MS journey.

It was the first-time I had been “progressive” at anything.

Though my new-found classification never bothered me because I figured I had had Progressive MS since day one. I never experienced the ups and downs of Relapsing-Remitting. It’s always been a gradual downhill slide. Like the most boring roller coaster ride ever. Like a driveway tilted just enough to let the rain run to the curb.

Having the label “Progressive MS” was no biggie to me because it is just that – a label. Someone’s opinion. A moniker. A mark. My hope is you feel the same way.

Whether your MS is RR (Relapsing-Remitting), SP (Secondary-Progressive), PP (Primary-Progressive) or CP (Chronic Progressive), it doesn’t matter. MS doesn’t define you. MS doesn’t limit you. So don’t let it change you.

After twenty-two years I have come to accept my progressive MS…it’s my not-so progressive sense of fashion that continues to embarrass my wife in public…

But I LOVE my cargo shorts, honey!

All this progressive talk reminds me today, March 28^th, is the first-ever Progressive MS Day, a day raising awareness for those living with the most debilitating forms of the disease. You can help spread the word in your social media by using the official hashtag: #ProgressiveMSDay.

Join me as I give #ProgressiveMSDay a well-deserved sitting ovation.

Keep moving my friend.

*Doug writes about MS and other stuff on his humor blog at myoddsock.com, Facebook.com/myoddsock & on Twitter @myoddsock.

MSAA Publishes New Booklet About MS Progression

Aside

We here at MSAA are pleased to announce another new publication, Understanding Progression in MS. This valuable resource is designed to help people with MS and their loved ones better understand what is happening when progression in MS occurs and provides a number of treatment options – from the newest approved disease-modifying therapy to symptom management and wellness strategies.

Understanding Progression in MS includes:

An overview of the background information and details of the types of MS
An overview of how progression in MS is thought to develop and how it is evaluated
Current treatment options, noting specifically how treating inflammation differs from treating progression
Detailed information on several prominent symptoms and symptom management
Strategies for healthy living with progressive MS

Check out this latest publication and view or order your copy today!

Funding for Understanding Progression in MS was made possible by Sanofi Genzyme.

Sometimes Living with Multiple Sclerosis Can Get Overwhelming

Posted on July 17, 2017 by MSAA

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

What’s in Your Junk Drawer?

Posted on April 24, 2017 by MSAA

By Penelope Conway

We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.

It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.

You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.

Does this sound familiar?

Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.

I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.

I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard. So what did I do? I ignored it.

Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.

“Nope, I’m not dealing with that. I’m not ready,” I would say.

But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.

Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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