"If you don't use it, you'll lose it"

Within a few years of my MS diagnosis, I met Randy at a local MS support group. He's a few years older than me and has had MS almost his entire life. He had been diagnosed with Relapsing Remitting MS when he was in the 7th grade, which quickly became Progressive MS. Throughout the years of knowing Randy, I learned that he was fortunate enough to marry but his wife left him within five (5) years as she felt life would be too difficult with his MS. It broke his heart but his faith has kept him going. Randy's favorite saying is "I have MS but it doesn't have me!" - we all need to remember this.

Something Randy said to me years ago struck me and I will never forget!  He told me, from his own personal experience that, "if you don't use it, you'll lose it". He told me how his inactivity over the years had caused his extremities to no longer function. This is something that applies to everyone but is much more critical that MS patients remember this and stay active as much as possible!

A few years ago I had a very bad MS exacerbation that caused severe pain in my feet and legs and confined me to a wheelchair. Depressed, not seeing progress, and feeling doomed to be in the chair for the rest of my life, I was like a miserable lump in a chair doing practically nothing. That was when I started hearing Randy's voice in my head every day, "if you don't use it, you'll lose it". Don't get me wrong, there were (and still are) times that I end up in bed all day because I might have done too much the day before. But, it's the multiple days of doing nothing that will do us in.

Another person in my MS support group, Anna, who is much younger than Randy, agreed with his philosophy and shared with us her similar experience. Years earlier she had been given an electric wheelchair; thankful and pleased, she sat in that chair every day. As a result, her lack of physical activity caused her to lose mobility in much of her extremities in just three (3) years. Now she cannot do anything without that wheelchair! Anna is so young and full of life, it makes it difficult to understand how easily this happened to her. Therefore, I believe that all MS patients can learn from both these two personal experiences - and I'm thankful that Randy and Anna have allowed me to share them - so that others can avoid duplicating it in their lives by remaining as active as they can.

Many years ago MS patients were told by doctors and therapist NOT to exercise, maybe do just a little stretching, nothing more. However, that philosophy has changed in recent years and MS patients are now encouraged to exercise regularly - just don't overdue it, take care not to over exert yourself. The valuable lessons we all can learn from both of these unfortunate personal experiences of these very real MS patients, (Randy and Anna) is to: keep moving, even when you're tired - which may be often - so that you don't lose mobility in your body sooner than you need to.

Note:  Earlier this year I learned personally (from experience) that water aerobics is an excellent exercise for people with MS! Walking with a cane, as I do now, I was expecting to have to hold on to the edge of the pool to avoid falling. However, in the water I could walk freely in the water without having to hold on! What a great feeling!  If you can find a good water aerobics instructor in your area, I highly encourage anyone with MS to try water aerobics!! 

Helpful VIDEO for those newly diagnosed with MS

Although this video is three (3) years old, the information is still valid and may be helpful, especially for a newly diagnosed MS patient.

A smile can be very powerful!

Whether you are newly diagnosed with MS or you've had it for many years, it can be a bumpy road. Some days are good and some are bad. The bad days, especially when an MS exacerbation attacks your body, can be extremely depressing making it easy for you to isolate yourself and/or become miserable.

I found out first hand how difficult it was to remain positive, especially when I was dealing with serious pain, sitting in a wheelchair - unable to walk or drive - stuck at home all the time except to be driven by my son to doctor's appointments. It made me feel so lonely and so depressed that deep, dark, deadly thoughts often entered my mind.

You may have heard the saying, "misery loves company". Well, truthfully, no one really wants to talk to or be around anyone who is miserable and negative! Doing so will just drive people far away and before long you'll become more withdrawn and even more depressed.

However, in the end your attitude can dictate how you end up feeling. You've likely also heard the saying, "fake it until you make it". Well, that's very true! Now, don't get me wrong, in the situation I mentioned above, I was still depressed and miserable inside but, I believe that there is a time and a place for everything. Therefore, the time to grieve, be miserable and sad is NOT when you're with other people. Obviously, at home and in private is the time to be sad or even have an occasional pity party, just not when others are around.

So, what worked for me to get beyond the depression? Well, I plastered a smile on my face every time I was around other people, even when I was just talking on the telephone. Inside I may have been crying, sometimes feeling like I was dying but, I hid it from others and truly just pretended that everything was fine. Initially planting a phony smile on my face was foreign, even somewhat uncomfortable; I sometimes felt like I was lying to everyone. But, the more I put on the fake smile, the more I tried to make it real, it become more natural. Before I knew it, in time the smile became easier to wear (almost like a piece of clothing) and it became more genuine, even to me.

The added bonus of the phony smile: it detracts you from the pain that you may be feeling inside, making living life just a little better. I recently read a quote that said, "A fake smile can hide a Million TearS". From personal experience I can tell you that this is so very true. So, why don't you give it a try - plant a smile on your face, even if you're miserable - you might be pleasantly surprised. And remember, a smile is contagious as the picture below clearly shows. Your lone phony (purple) smile = many real (yellow) smiles.

MS and You and Me

Welcome to my MS and You blog.  I’m not a doctor, a nurse, or a licensed MS specialist but, I do have Multiple Sclerosis (MS). In fact, I was formally diagnosed with Relapsing Remitting MS twice - originally in 2002 and again in 2009.  

My name is Dawn Abbott and I remember… strange symptoms, like severe numbness, tingling, and burning in my legs and feet. I remember not knowing what was happening to my body, feeling scared, and being frustrated at how long the diagnosis process actually took. I felt so alone and you may too.  

My intent for this blog is to give people going through the process of being diagnosed with Multiple Sclerosis, as well as those already diagnosed, a place to turn to learn about the disease and get support. At this time I’m just getting started but, it’s my hope that eventually you’ll be able to get support from others who currently live with MS too.  

For almost nine (9) years, I’ve had the privilege of running a local support group for people with Multiple Sclerosis, the first two (2) years as a co-leader and, the last seven (7) years actually facilitating the monthly support group. The National Multiple Sclerosis Society (NMSS) sponsors the group and provides regular trainings.  

Over the years, in my capacity as a support group leader, I have developed many great contacts in the MS community that have proven very helpful to me. As a result, many people turn to me for information about MS and other resources. It is my hope that you too will benefit from my experience and passion for helping people with MS. Therefore, I personally invite you to visit this website often to check to see what’s new.  In the meantime, have a great day!