How to regain Lower Mobility :Part I

It is a long hard road as each of us knows to regain lower mobility. As a person who suffered with foot drop and instability I know how difficult this can be. I became very defensive when my neurologist insisted I use a walking cane or “stick” as it is called in the UK. Independence and self assurance vanished in front of my eyes. After several falls and a fair number of bruises, my options were fading and the stick became my best friend during relapses. It hid in a closet during those wonderful months I was in remission. As disability worsened, again options had to be weighed: AFO’s or a wheelchair. The thought of not being able to stand and walk crippled me emotionally long before it became a physical reality.

When left sided weakness made it too painful and unwieldy to rely on my cane, I was fitted with AFO’s. My inner rebellious nature rose to the surface when I opted for a sleek set of AFO’s with a purple butterfly pattern. More thought about designer AFO’s could have prevented embarrassment as the realization that purple butterflies might not always be the best choice with much of my wardrobe set in. I had to choose between full length sticks with arm braces or a walker. I chose a rollater walker due to the increasing weakness in my left arm. The shoes I had to wear over these monstrous pieces of plastic looked like oversized clown costume affair. I was standing on my own, so to speak, in short order. One day I took a few steps toward my youngest daughter and we both had tears in our eyes over the accomplishment.

Soon I realized that the muscles in my legs were becoming weaker rather than gaining the strength my doctor promised. I was upright, but the constant support prevented any real improvement. At that time I was unaware that IV Solumedral therapy and the use of Baclofen for spasticity had caused muscle wasting and atrophy. These side effects are rarely explained to someone whose symptoms begin to disappear like magic during a relapse.

The AFO’s were relegated to the closet next to the walking stick. Pain, clumsiness and physical therapy replaced the romantic butterflies. Foolishly steroids remained my drug of choice to overcome many of my MS symptoms. Unaware that I had developed osteoporosis, I forged ahead with my walker. Drop foot caused me to kiss the dirt on many occasions. It’s nearly impossible to prevent a face plant once a full trip has taken place.

Battered and bruised, I remained stubborn and resolute. The local emergency room staff all knew me by sight. On one occasion I arrived with two black eyes, a swollen mouth, bloody nose and blood soaked shirt and designer jeans. I turned around in my carport, missed the only step in sight and landed face down on the cement floor. My jaw and nose were broken. I had deep cuts on my mouth, arms and legs. That’s a lot of damage to sustain while traveling zero miles per hour.

Though most of my adaptive and assistive equipment is long gone, I keep the AFO’s, walking stick and power chair to remind me of a time many people might choose to forget.

How It feels To Be An MS Dropout…

When MS began to drastically affect my life, I was a wife, mother and career professional with many varied interests. I was active in my church, community and home schooled my children. The first thing to go was my career. Instead of getting paid, I did volunteer work in the same field. People are more forgiving of your physical problems and cog fog if they aren’t paying you. Eventually my youngest daughter decided to finish her last two years of high school in the public school system. Actually I think I was more involved with her education than I was before as I volunteered for everything at school also.

By the time my EDSS reached 8.0 there was little of the old ‘me’ left. I went from caregiver to needing daily care myself. I hated the power chair, scooter, transfer table, disabled license plates for the handicap equipped van, support bars, in-home health care and me. I didn’t adapt to my situation as well as some of my “MS buddies”; likely because I’m stubborn, opinionated and was accustomed to giving not taking. Though they tried to adapt also, my family seemed to be falling apart before my eyes.

Somewhere along the line I stopped feeling sorry for myself and saved as many *spoons as I could to find ways to feel better physically hoping that emotional strength would follow. Posting online took so much time that I was numb with fatigue. My online friends (some have actually remained friends) pulled me through it all. I searched the web to find adaptive aids to help me keyboard, communicate and make things look bigger so my failing eyes could see them.

The lifestyle diet and drug changes I made would have been difficult for anyone. In my hazy cognitively impaired stupor, it was a gargantuan obstacle. Again my husband, children and MS friends came to the rescue. By the time I heard about CCSVI nothing short of a miracle was going to slow my downward spiral.

The rest is Youtube and Facebook history. There is still a question mark that obscures my sight from the future but I no longer fear the unknown because I’ve mastered it before; always with “a little help from my friends. I get by with a little help from my friends.” (John Lennon and Paul McCartney)

The transition back to normalcy has been bittersweet. I still have to pinch myself when I wake up in the morning and there is no support bar above my head. The van was sold well over a year ago and every adaptive and assistive device but my power chair gathering dust in the garage has been given away or donated.  Much of it I had to fight for from either my insurance company or a charitable organization. . Some people have said I was crazy to get rid of all of those things that took me so long to accumulate because my recovery from MS symptoms could be taken away anytime. Perhaps they are right yet I can’t live in limbo either.

I would like to say that the journey home has been bright and beautiful, and for the most part it has been very positive. As my cognitive functions improved I learned that about 15 years of my MS journey has been time compressed. Though I remember the events of the past decade and a half, there are holes in the tapestry of time that are as hazy as they were the first time around. After the news of Dr. Zamboni’s work exploded in cyber space chaos ensued. The trust I once readily gave my doctors is gone forever. I have formed new medical alliances, but the days of trust and reliance will never again be realized. New friendships have been forged yet cannot replace the ones lost by anger and mistrust. New beginnings are always difficult, sometimes painful. Though I am in communication with others who have had similar experiences, we have all chosen different ways to deal with recovery. The excitement and gratitude for a second chance has been tempered somewhat by the more negative events of the past two years. The diagnosis of MS places a person in a strange club of sorts. There is only one requirement to join this group, but the price is so high that nobody wants to belong. Some who have only residual effects of the condition no longer feel “at home” anymore. Others would like to pretend that they were never even there. One woman I know was once extremely overweight. She could tell self-effacing jokes that made all of her more portly friends tear up in laughter. When she lost enough weight to look “normal” she began to realize that these friends didn’t laugh anymore when she told her jokes. Laughter was replaced with embarrassment, anger and maybe a touch of envy. In any case, she was no longer welcome in that “club” because she did not meet the one requirement: obesity. It can be that way for PwMS/CCSVI also.

The only regret I feel comes from the inequity among us. Gender, age, location, education, money, influence, achievements or any other disparity that may exist for us should have no effect on our opportunity to be treated. Though I may not be personally responsible for the egregious treatment of PwMS/CCSVI in regard to the access to the proper medical care, guilt does ebb and flow unbidden.

It is past time for reparation and equal access. To continue to allow the suffering, indignity and declining quality of life for thousands of people with a debilitating chronic disease solely to appease those with a personal agenda is an inhumane, heinous act of cowardice.


*Anyone who has not been introduced to the “Spoon Story” by Christine Miserandino , you can find it here: