Melissa Summers

MS Walk 2009

melissasummers — Wed, 03 Jun 2009 15:18:01 +0000

Wow, time is flying! The walk was a few weeks ago, I cannot believe that it has been that long already.
Like every year, the sky was dark and gloomy..I honestly think it is a tradition.
With husband in the car and dog on the leash getting ready to load up, thunder and lightening greeted us a “Good Morning”. Now dog was not so sure about that greeting! But with all the training and socialization that I have been doing with her, I really wanted her on this walk. So we drove through the rain to the walk site…walked through the pouring rain to the registration building..sigh..at that point I wasn’t sure if I was going to walk in that kind of weather.
But by the time registration was done, my team gathered, dog wrangled, and ribbon cutting ceremony done, the skies cleared out for our walk. We even had a few patches of sunshine to light our way.
Nova, our pup, did wonderfully. She even had a great dane walking behind her for a stretch that kept goosing her behind, she would jump but stayed in a heel position. I am so proud of her! The only time she had an issue was at the end of the walk when a volunteer went to place a finishing medal around her neck. “You want to put something else around my neck!!??”
While there were many in attendance at the walk, it was certain that the weather had kept quite a few at home.
I am proud to say that my brace worked wonderfully! I had no problems at all walking the 3 miles….first time in 2 years without my cane!!
Special thanks to my family and my co-workers that joined me on that somewhat dreary day to walk and supprt the cause! Cheers!

AFO update

melissasummers — Sun, 26 Apr 2009 15:37:05 +0000

Now that it has been some time with the brace, I have noticed some great changes. Not only is my gait normalized since I do not have to have that “hip swing” to allow extra ground clearance on the right side, but my gait is much better without the brace also. I was not expecting a better gait without the brace. My theory on that is that by the brace preventing my foot from dropping, it is allowing my other muscles to be used and strengthened.

Some things are still awkward with the brace. The first one is getting my shoe on without the brace sliding off my foot! Then when leaving the house and climbing in the car to head off for work, I had to learn to work the accelerator pedal without having that downward flexion on the right foot. Descending a staircase also requires a different technique, either I carefully make sure my right foot overhangs the step so my foot can pivot as I step down, or I plant my foot normally on the stair tread and clumsily bend my knee. The last option is probably safer, but it really offsets my body and shifts my hips quite a bit.

Overall, the brace has been of benefit. I do wish there are some design changes to overcome some of the awkwardness of the device.

Between the brace and my pup that just turned a year old, I keep moving. I was told that the brace might help lessen the fatigue, but it’s really hard to say since my fatigue hits hard and fast. While I do still have foot and ankle pain, it’s nothing like before the brace! The annual MS walk is coming up in a few short weeks, and I am ready…brace on..and no cane this year!

AFO

melissasummers — Fri, 06 Mar 2009 10:41:29 +0000

Since my last neuro appointment, I had been anxiously awaiting the arrival of my new AFO brace to aid my walking ability.

The first step was to have an appointment at a medical supply supply facility that provides orthotics. Luckily there was such a place just down the road from where I work. At the appointment my gait was observed..I always have trouble having my “natural gait” show when I know that people are watching me walk. Then I was place in a cast from my toes to my knee, the cast would be used to mold my brace. Once the cast was cured and removed I was told the brace would be in and ready in about two weeks. Two weeks.. I have been so spoiled by working in the medical field that I am not used to waiting for things!

Two weeks pass by and then I recieve the call that the brace is ready for me to be fitted. I am more than ready as my ankle just aches from struggling with the weakness. The brace is a hinged brace to allow my foot to flex upwards but prevents it from pointing down towards the floor. The bottom section starts off thin from just below my toes, the brace thickens as it covers and cups my heel. The leg section runs from my ankle and up the back of my calf almost to the back of my knee. Just below my knee at the top of the brace there is one velco strap. The hinges connecting the two pieces lies at my ankle joint. At the fitting the girl explained that I needed to pay attention to where the brace may be rubbing, andn to discontinue use if anything gets painful or if any blisters develop. Because my ankles are very bony and prominant, I may have difficulty with it rubbing on them. I was instructed to wear the brace just for a few hours, increasing the time each day. I headed back to work with the brace in place. It didn’t take long before it had to be removed! My work shoes were not designed for a brace..my foot felt crammed and my toes were going asleep. I traded my work shoes for my regular shoes which was a better fit but I still was not comfortable.

The next day I braced myself up to test it out on a walk with the dog. It was during a short walk that I realized this was not going to work for me. My ankle felt as if it was trying to escape from the brace and was rubbing viciously on the brace joints. My heel was shifting around in the heel “cup” like I had on loose shoes. An adjustment was in order.

So on Monday I headed back to the medical company. I felt like there was going to be nothing they could do to make this comfortable for me. The brace was uncomfortable, painful and clumsy. They fitted it up with a thicker brace padding ove the hinges and placed it back on my leg. It still shifted on my heel some, but I was willing to give that change a try. To my surprise, I was able to finish out the work day without having to remove the brace, the new padding worked!

With the brace on and as I became familiar with how it felt, I noticed my gait was becoming smoother. I did not have to lean to my left to give my right foot clearance of the floor to take a step. In fact, I do not even think that I had a limp or a staggering step. For the first time in two years….walking almost felt easy and normal.

So the excitment has returned. The MS walk is in May, and this may the first year since I lost my right leg two years ago that I will not be using my cane!

After using the brace now for a few days after the adjustment, I am now able to wear it for the duration of my work day. Honestly, it is hard on my foot as there is no cushion, but my gait is almost perfect.

Here is the brace closed, my foot is unable to flex down towards the floor.

Here is how the brace looks when I take a step forward. My ankle is allowed to bend in the direction needed to walk.

Happy Anniversary

melissasummers — Fri, 27 Feb 2009 23:32:29 +0000

Sometimes it is unbelievable at how fast time flies. It has been one year since my last relapse and the start of this blog. I originally began the blog to help myself track the progress as I recovered from my relapse. After all when something is abruptly taken from you without warning, the shock of that reality can be overwhelming. The first time I lost use of a leg, in 2007, fear and frustration set in immediately once my limitations were realized. It took not only steroids but an extensive round of physical therapy to slowly bring back my ability. My only regret on that relapse was I had no documentation, visual or written, to refer back on when I felt like I was not making any progress. So, last year when the same thing occured on the left side, I began this blog for my own personal reasons. Once I had it posted, I decided that the blog would be a useful tool in communicating to my family my well-being, accomplishments..or lack of gain. Then as I faced the frustrations of dealing with MS, I felt that others faced with this disease should be aware that they are not alone. It is not uncommon to feel frustration and grief. Not every story has a happily ever after. Life is not as it once was…it’s different. Yet, different is not bad. I see things and appreciate things in a new way. Simple accomplishments are often celebrated…or I should say, once simple tasks are often celebrated. A few years ago, if someone told me that in the near future that I would celebrate the fact that I finished a 3 mile walk without collapsing, I may have laughed as I was an avid walker. I have pushed my limitations beyond their limits. I have learned that determination has a longer definition than what the dictionary states.

Today, I received my AFO, a brace fro my right foot and ankle. Once I get some pictures, I’ll tell my story on dealing with this new and exciting part of my adventure!

Post Neuro Visit and Tools of the Trade

melissasummers — Fri, 13 Feb 2009 01:28:44 +0000

On Wednesday I had a visit to my neurologist that was moved up a few weeks because of the trouble I had been having with my feet and ankles. The last few weeks it has felt as though I have been walking around on ice skates with no ice. My ankles feel very tired and weak. And of course, once anything in my lower extremities feels weak, my balance gets unstable.

The good news is that I am not in the midst of a relapse, so no steroids. The other good news is that I will be fitted this week for an AFO, a brace to keep my foot from dangling when I raise it to take a step. While some may not consider a brace “good news”, I see it as a tool to help me stay moving.

It’s important to keep viewing assistive devices like braces and canes as tools, so many easily convert the views of these items as a sign of the disease “winning”. But these items can be priceless . With these things I am able to walk distances, or over uneven ground. I also like to classify my medications also as useful tools that enable me to perform better than what I would be without them. (Although I tend to have a love/hate relationship with my meds)

Hopefully the AFO will help keep me from tripping on my own feet, make climbing steps less tricky and also will help my energy levels as it will be less work to walk as my gait is affected by my misbehaving ankles. Basically, I am excited about my fitting on Friday…I am hoping though that I will not have to get new shoes to fit around the brace, mine are only a few weeks old and I am not one for shopping!

2009 Walk Preparations!

melissasummers — Thu, 29 Jan 2009 23:06:07 +0000

Time is flying, and preparations for the National Multiple Sclerosis Society Michigan walk are underway! Right now I have been getting my webpage ready for the walk and soon will be looking for team members to join me on the 3 mile trek on May 9, 2009.

It’s exciting as not only does this raise money for research and education but for myself it is a personal challenge as I have some mobilty issues.

My mobilty isssues are very minor right now but I am very cautious as I approach this time of year since this is the season that I have had relapses the last 2 years. My right foot has been giving me some trouble..I am in contact with my neurologist currently to see if this is something that needs looked at in detail. Cross your fingers!

Happy New Year

melissasummers — Sat, 10 Jan 2009 02:22:20 +0000

Happy New Years!

Some take the mark of the New Year to use as a fresh slate for a new beginning with an organized list of resolutions. As for myself, organization is not a word in my vocabulary. Life changes too quickly and easily to make any dramatic changes or plans. For the most part I live one day at a time, giving my attention to what needs attending, either body or spirit. This trait is also what has kept me “sane” during all the inconsistencies that MS throws around.

Of course MS is not the only things throwing things around..last week a wind storm decided that our front tree would look much better laying down in the drive on top of our two cars. Thankfully, the tree was removed, we had use of a generator ( Thanks Mom & Dad) for the 3 days without power and we have a loaner car to get us through until our vehicles are fixed.

Life is well. No, I didn’t plan on having such a minor disaster, but everything works out in the end regardless of whenever the end may occur. Even disasters can provide lessons that are important in life. After all, one needs not to wait for the next New Years to start anew…a fresh start is just a moment away, ready or not!

Winter Wonderland

melissasummers — Wed, 24 Dec 2008 13:24:33 +0000

With the holiday season rapidly arriving, Michigan received a gift of snow storms, high winds, ice and below average temperatures over the last few days. The bitter cold has been rough, not only increasing my spastic muscles but also has been affecting the circulation in my fingers.

A recent visit to my regular doctor confirmed that my circulation losses are from Reynauds syndrome. The main reason that I went to the doctor’s was that I had been experiencing a 3 week long headache. Turns out that my muscles were so spastic that it had been giving me a tension headache!

The other day it was a brisk 16 degrees out my door. The wind was taking the already knee deep snow and tossing it into drifting banks. My house was warm and cozy..and then the new pup needed to go outside for a potty break! Since we are in the midst of housebreaking, any hints of a full puppy bladder are not ignored!

Armed with full winter gear, I trudged through the snow suddenly realizing that there are benefits to this winter weather. My midcalf boots provide a brace type effect, preventing foot drop. The deep snow becomes my resistance trainer for leg strength and also provides a soft landing when I trip or lose my balance. Plus the more I move around, the better it is for helping my spasticity. There is also no greater motivation than watching my dogs wagging their tails inviting me to play in the snow.

Yes, visions of being curled up by a flickering warm fire with a book in my hands dance through my head as I brave the brisk air..but my chimney doesn’t work, the puppy would steal my blanket and play keep away…and then I would get that look from her……..”Momma, I think I have to go potty outside!”

My Friend

melissasummers — Thu, 11 Dec 2008 11:19:20 +0000

Each year as the temperatures get lower, my spasticity increases. Most commonly my legs are affected, but when it is cold the back of my arms and my stomach also start contracting.

Overall, my legs have been very well with coordination and even strength. Stairs give me minor troubles, but as long as I am careful, they are not an obstacle. When I did have problems with steps and getting off the floor, one of my dogs was always there for me to hold on to and steady myself.

Last week, I lost that beautiful helper of mine. He was more than a helper. He was always there for me, during floor exercise time, walking exercise time, and during my sitting down and crying my eyes out times when frustration took over..he was there for me to hold. During his last month, I held him, cheered him on and helped him..just as he had supported me in the past. That circle was now complete and it was his time to move on. He had shown me the meaning of devotion. And I was able to show him that I learned that lesson as I held him during his passing.

I was blessed that he shared the last seven years of his time here in our home. The lessons and memories that he has left us with are numerous and precious.

Peaceful journey Joker…you will be missed.

Exercise!

melissasummers — Sat, 08 Nov 2008 15:35:53 +0000

No matter anyone’s physical abilities, physical activity is important to support the body and it’s functions. Living with MS, exercise has become important for me to keep my muscles stretched to help combat my spasticity. My spasticity is only slightly relieved by medication, and that combined with exercise lowers the pain levels a touch further. Spasticty and it’s best friend, MS fatigue make exercise difficult. My stamina is nonexistent which had completely taken any cardiovascular exercise out of my routines.

A few weeks ago I invested in a currently popular and difficult to find video game system that has an exercise program designed for the typical couch potato. This program concentrates on strength, yoga and most importantly to me, balance. It offers interactive training while safe in your own home, another plus for myself.

Lately I have a new favorite on this program…jogging in place. While running through a nice virtual park filled with happy “people” waving and cheering me on, I am able to get my heart rate increased. The jogging in place allows me to not worry about foot drop causing my to stumble, unlike my treadmill which had become a very dangerous piece of equipment!

As for the balance workouts, I believe my overall balance has improved. However, there are still some days that no matter how strong I am, MS completely steals away my coordination.