The Impact of Mobility On The Quality of Life and Self Esteem

People with mobility and health issues wil "get" me when I talk about this stuff but other people who have been lucky enough to not have to deal with this may not. To understand me a bit more easily, here is my condensed background history:

In 2000 I was a fairly young, single mother of three very young children and I was diagnosed with so called MS. My biggest fear was that I would lose the use of my legs forever. (This fear led me to the regrettable decision to take Copaxone.)It also led me to create a goal to rehabilitate my legs and hike the West Coast Trail on Vancouver Island. I went on the Swank diet and joined Curves and two years later, me, my two young boys and several friends did it. My legs were not 100% even after 2 years of working extremely hard to get them back in shape. Maintaining my mobility and quality of life has always been a constant battle. I was told by my neuro that my leg problem was just part and parcel of so called MS. He didn't know how the disease would progress and he didn't know if the drugs would help. Nobody had any concrete answers.

Living with the constant fear of the unkown SUCKS! For a few years my condition stabilized and I beleived I was "managing" my so called MS. In hindsight, Im pretty certain that Copaxone did not help me back then. I beleive it was the diet and excercise that kept me healthier. From everything I have learned in the last couple years about so called MS and the Disease modifying drugs, I am more inclined to beleive that I was just in a natural remission (the nature of the beast).

Without going into too much detail, over the next few years, my health started to decline despite my healthier lifestyle and Copaxone. I stopped taking Copaxone once I was convinced by my research that it did little more than placebo effect. I was convinced it was actually making me sicker. The doctors had no answers and their only solution was more useless and harmful drugs. I was in what I called "Free Fall Mode" at that point. I had been under the illusion that diet and drugs were helping me manage my symptoms and that I was winning. Reality gave me a huge slap in the face and I was extremely scared. My biggest fear of becoming an invalid and having my family become my caretakers was looming on the horizon. Depression set in. I spent many hours planning on how I would euthanize myself to save me and my family the humiliation and the painful drudgery.

FEAR of the unkown. FEAR of a slow, painful death. ANGER that there is no cure. ANGER that I am losing my independence. SHAME that I can't be a "whole person", a wife, a mother. GUILT that my sickness was holding back my huband and children. GUILT that I may have passed on this disease to my kids. TERROR in the knowledge that my sickness is just going to get worse.

With all this mayhem going on in my brain I wanted to scream when I heard someone say "But you dont look sick." Or "Your MS seems to be the good kind." Or "Keep positive."

WHAT THE FUCK???? Note to non sick people: Sometimes it's better to just shut the fuck up.

So dealing with this mentality for years had a hugely negative impact on my life and my family's lives. I never had the highest self esteem to begin with, so add this chaos to the mix and you've got a pretty sad cocktail. I tried to help myself by setting goals and looking for the positives but year after year of being pummeled physically and emotionally was soul sucking. The reality was that my life was spiraling down, out of control. I use to laugh and tell myself that I must have been a horribly bad person in my last life to be reincarnated into this one. I would also tell myself to suck it up because there were people who were worse off than me. These were the "mental band aides" that only helped a little bit, unfortunately. The neuros and Doctors would only offer drugs and give me that "I am sorry but you're fucked" look as they chased me out of their office because I refused their drugs. I had no more positive things to plan for in my future. Hope was a dirty, four letter word. I knew I was fucked.

In 2010 my hope was restored! I heard about Dr. Zamboni's work in CCSVI. I researched this information for months before deciding to try it. I was getting sicker and sicker so I figured I had nothing to lose and everything to gain. I flew to Poland to Euromedic and had the angioplasty, or venoplasty as some call it. My so called MS symptoms went away-except for my legs. They got better but not 100%. I was still ecstatic!!! I was still able to walk. I couldn't run or hike anymore but at least I could walk. I was totally cool with that! I had rehabilitated my legs before so maybe I could do it again. I could look to the future and plan holidays and think about gowing old with my husband, children and grandchildren.

Over the next year my legs were getting weaker, slowly but surely. I figured I might be re-stenosing. None of my other symptoms came back, though. My legs got so bad that I was using a WalkAide" machine and a cane and barely able to hobble around for short distances. All those negative emotions started to raise thier ugly heads again. Was a wheelchair on my horizon?? Would my husband leave me? Why would anyone want me? I saw the look of fear and pitty in stranger's eyes when I was out on the street. I couldn't bear to see it in they eyes of my loved ones. I would cling to my husband's arm when we went out anywhere and I could only plan to go out when I knew he could go with me. I was sad and angry that I would never hike again. I was terrified that I would be in a wheelchair shortly. My self worth was at an all time low.


Fear, anger and shame are not always negative. They can motivate. These emotions kicked my ass into finding a solution for my leg problems. I found out I had venous insufficiency in both my my legs from bad valves! I had a vein ablation treatment that basically burns out the the useless saphenous veins. I am now in the process of rehabilitating my legs again. I started out with my doubts that the treatment would improve my walking but I am geetting stronger and my walking is improving! My sense of self worth has increased one hundred fold! I haven't used the cane or needed the WalkAide in months! I don't have to go out with my husband and cling to his arm anymore either! Yesterday I spent the whole day in the busy city, by myself, walking for hours. I had my moments of fear and doubt when my legs would fatigue and I couldnt find my bus. I wanted to cry at one point but I was able to tell myself that I have come so far and I AM GETTING BETTER and it's only a matter of time and hard work before I WILL HIKE AGAIN!


Funny how things have gone full circle for me. Twelve years ago I was just diagnosed with so called MS and working at rehabilitating my legs. Today I am dealing with the cause of that so called diagnosis and working at rehabiltating my legs once again! Why did I write this? I want people with health issues to know they are not alone and I want the "healthy" people to get a glimpse of what we go through mentally, not just physically in our fight. I want Doctors and neuros to take note and realize that when they diagnose us we beleive them. When they give us drugs we trust them. I was told my leg problems were so called MS for years! If I would have listened to that I would be in a wheelchair right now!

If it weren't for my sense of hunmour and me telling myself that this was a valuable life experience I would probably be insane. I am hoping-yes I have HOPE! It is no longer a dirty, four letter word! I am hoping to hike soon and maybe go on a backpacking trip because I never could bring myself to throw out or give away my backpack. If I did, I feared it was giving up, and I would never hike again.

Am I a stronger person for experiencing all this? Probably. But at what cost? I would NEVER wish this on anyone. (Well- maybe a certain neuro or two) I am planning on getting on with my life and putting the last twelve years of pain, fear, anger and shame behind me. Sift out the lessons and good times, brush myself off and go forward.

January 9, 2012 Post Leg Vein Ablation and Rehab Update

Since my ablation in November my legs have improved on a daily basis. I started working out with a personal trainer 2 X per week for 1.5 hours per session. It's a total body workout using machines and free weights with a focus on the muscles in the legs and glutes that we use to walk. In the beginning, the workouts kicked my ass! I could barely walk home afterward and was useless the rest of the evening until I fell exhausted into bed around 9pm. This occurred for the first couple weeks then my endurance improved! As a result of the workouts my legs were getting stronger and I was able to walk longer before my legs fatigued and I could take longer strides! EXCITING!!! I did hurt my left knee because my right leg is weaker and I baby it and overwork the left leg and knee. I also have lower back pain when I sleep and my feet are bruised and sore and I even have a lump on the tendon that runs through my left arch. (You can see this tendon when you flex your big toe)


WOW! SO I went to physio today at AFTC and I found out my gait is alright!!! My problem is my muscles need building and strengthening now and I push myself to walk faster and longer than I should. My strides are too long. Thus I have hurt my left knee. He tested my legs and gave me some treatments and exercises to do 5 X a week at home along with treadmill. I am also going to up my workouts with personal trainer to 3 X per week. My goal is be able to hike the Dragons Back trail by spring!It's amazing once you take neuros and so called MS out of the equation!!! I am going to rehab my legs and I WILL HIKE AGAIN!!!!

Post Leg Vein Ablation Update Nov. 11/11

On Nov. 02/11 I had bilateral (both legs) vein ablation. I was in the hospital for the procedure and received general anesthesia. The surgery was under 2 hours in duration. I had a bit of pain right after and received a non-opiate pain pill. I was fine after that! No pain at all!! I received some minor bruising on my legs and a tiny incision on each calf where the catheter was inserted. My two Dr's were wonderful and the nursing staff was extremely attentive. I noticed a bit of improvement post surgery but nothing earth shattering. My thighs and calves and feet all felt like heavy concrete before my ablation and afterwards (1 day) I noticed that the thighs and calves in both legs were much lighter feeling, the left foot also was lighter. The right foot still felt like I was wearing concrete shoes. The numbness and tingling in both feet and calves seemed to absent and I havent had any pain or swelling from the surgery. I do have some new, post op numbness in my right shin. The Dr's warned me this may occur but in the scheme of things I've had to deal with, this is but a trifle and may go away on it's own.

One thing I did notice was anesthesia hangover!!! OY!!! I would get so mind and body fatigued, about mid day, that I felt like my batteries were drained! I started drinking lots of coconut water and it really helped!! It's like Mother Nature's gator aide. When I went walking the dogs my right leg still felt weaker and heavy when it got fatigued and it fatigued much faster than the left. (as per usual) I was happy for the benefit I got from surgery but still was a bit bummed that my right leg wasnt much better.

I dont want to jinx myself but for the last 2 days, (Nov 9,10), there has been a change in my right leg. The concrete shoe is gone and a knife in my calf muscle, just below the back of the knee has replaced it! You laugh! I laughed too!! But I thought this was a good thing!!! It felt like a charlie horse so I assumed my calf muscle and peronneal nerve wer finally getting proper blood flow and waking up. Last night when I was walking the dogs at bedtime, the knife was gone and I was walking normally for the first time in years. Now when I say normally, you have to understand what that means to me! I felt like both my legs were normal feeling. No concrete heaviness, no knife etc. It felt amazing!!! My husband noticed that I wasnt really walking "normally" in the true sense of the word. He said my ankles would wobble a bit and step was a bit wobbley, even though I was able to make longer, fluid strides. Today on my walks I have been practicing the heel toe mantra as I walk. It's like I have to re train my brain and legs again! I noticed that I have improved stamina in both legs but practicing the heel toe walk, my legs fatigue a bit quicker.

I am going to start some self directed physio and rehab in the gym once my 2 weeks post op is done and I can remove these lovely compression knee highs. I do not know if I have permanent nerve damage or foot drop and would like a professional diagnosis. All these years I was told that my walking problem was "MS" and nobody looked any further. If I still lived in Canada I doubt that I would have gotten treatment for my venous insufficiency of my legs due to the negative bias against CCSVI patients. Even here, in Hong Kong, I ran across a UK Dr. who all but crawled out of his skin and lied to my face so he could justify not performing the vein ablation on my legs. I made the mistake of telling him I had undergone CCSVI treatment and he was, unfortunately, one of those ignorant haters. Dare I name the mann? Suffice to say I will never go back to him!!!

A Cautionary Moment

After my recent posts about my leg vein issues and treatment with Daflon a lot of people are asking where they can get it. While Daflon is readily available for sale on line, without an RX, everyone should first be checked for leg vein problems like insufficiency and DVT (deep vein thrombosis
You should always check with your Dr. before starting any new meds or supplements as some drugs and supplements mixed together can be harmful.I am not a health care professional. My blog and the information contained within is about my personal health experiences.

Update On My Leg Vein Ablation Quest

Today is one week since I first went to see the general surgeon about my leg veins. At that appointment I told him that I had recently underwent CCSVI treatment and a Doppler of my legs that showed venous insufficiency. He had not heard of CCSVI so didn't want to jump into vein ablation treatment before he knew what my whole issues were. He said to come back and see him in a week while he researches CCSVI. Meantime he gave a prescription for daflon 500 CLICK HERE I didn't know what it was as I had never heard of it. That night I took 2 pills at dinnertime. I didn't notice anything different. The next day I took 2 pills with brunch and WHAMO! My legs werent heavy anymore and I could walk faster and had more stamina and didn't need my cane!! I also noted that colours were more vivid and everything in general seemed to be more 3D like. It was BIZARRE!!! A good kind of bizarre, though.

So for the last week I have been taking daflon: two pills with breakfast and two pills with dinner. It is not a cure all but it certainly helped! This morning I went back to see the surgeon. He found out that CCSVI is related to the central nervous system and so the leg vein issue was unrelated. He said he recommends vein ablation treatment for me!!! I told him how the daflon affected me, especially the part about the vision and he said that was good because it might be helping my CCSVI issues and he wants me to stay on the daflon! I am now waiting for a phone call to find out where and when my ablation is. It's been a long, long road to this point! 10 years I have suffered with these leg problems and was told it was just MS. 10 years!!! What a crying shame! The past is the past, however. Now I can see light at the end of the tunnel and it's GLORIOUS!

My Search For Answers

For quite some time now I have been pondering why all my so called MS symptoms went away after my angioplasty in 2010 but my legs never got 100% better. In fact, over time, since my CCSVI treatment, my legs have been getting progressively worse. My symptoms: difficulty walking, heaviness, swelling, pain, numbness and feet turning blue. I speculated it might be because I had a membrane growing inside my left jugular stent that was occluding blood flow but I figured it was more than that. I have thought that because we are born with venous malformations of the central nervous system what is stopping us from having other venous malformations throughout our body? I had also heard that the azygos, iliac and renal veins can play a part in lower body mobility. When I was treated in Poland they only looked at my azygos and jugulars. I decided to look into getting those other veins looked at along with seeing about the membrane in my stent.

I did a lot of research before deciding to go Vascular Access Center in Seattle, Washington on July 28, 2011 with Dr. McGuckin. Why didnt I go back to Poland? I really would have loved to, as I trust Dr's Simka and Ludyga implicitly, but Euromedic doesnt look at the renals or iliac. The findings from VAC were left iliac 50% stenosed, right iliac normal, left renal 50% stenosed, right renal normal, My azygos had a tight web like stenosis and was 80% blocked after cutting out the webbing the flow was still blocked so they put a stent. The membrane in my left jugular was cut out and blood flow was returned. My right jugular had restenosed 50% and was ballooned also.

My legs did not get any better after treatment, unfortunately, so I got a referral for a Doppler sonagram in Salem, Oregon while I was down there visiting my Mom. EUREKA! Chronic venous insufficiency in both legs! Ever since I was DX'd with MS I was told my leg problems were MS. NOT TRUE! I am back home now and plan on getting referred to a vein specialist. From what I understand, it looks like vein ablation treatment will remedy my problem. This is the same treatment they use for varicose veins. click here

I went into all of this CCSVI stuff for answers and closure. Instead I am faced with hundreds of more questions. This new paradigm about so called MS is just in the beginning stages and we are the guinea pigs. There are no definitive answers-YET. I will be surprised if it happens in my lifetime. Most IR's are just looking at the central nervous system veins and I know it's much bigger than that. There isn't enough sharing of information between the clinics that are doing the treatments and studies. Knowledge can be attained through trial and error and by covering up errors we will not learn from others mistakes, unfortunately.

I now, no longer believe in MS. I know I have venous issues throughout my body and not some auto immune disorder. I still dont have all the puzzle pieces but I certainly am further ahead then when I was blithely trusting my neurologist.

May 27, 2011 My Dream of Running

The CCSVI treatment took all my symptoms away but I was left with weakness in my right leg. It has been one year since my angioplasty and despite going to physio, the gym and trying to eat healthy I am still unable to run. (This was a goal of mine: to be able to run down the beach with my dogs. I have attained the beach part as Im living in Hong Kong now and loving it. Something I could never have done prior to my treatment due to the heat) Besides wanting to run on the beach I had aspirations of hiking the miles and miles of endlessly gorgeous trails on some of the islands but I have not even been able to do that either)I always understood foot drop to be more pronounced, i.e. causing a person to drag the foot and/or limp. This is partly correct but I have recently learned that foot drop also includes the problem I am having now. This is a nerve issue and no amount of exercise or physio or diet is going to change that, unfortunately. The other problem is that because of the weakness in my right leg I rely on my left leg more and Im wearing out my left knee.

A friend of mine suggested trying a "Walkaide System". I Googled it and it's a pricey unit: about $4,300.00CAD. I luckily found a used unit on EBay for under a grand and I'm currently waiting to receive it. I have to go to a WalkAide distributor to have it fitted to me once it arrives. Basically its a plastic and fabric band that fits around the upper part of the calf just below the knee. Electrodes stimulate the nerve that is currently not getting the message from my brain to move. I have read that this stimulation can lead to rehabilitation of the nerve. So I still have hope to be able to hike. YAAY!!

Abstract
Foot drop is the inability to voluntarily dorsiflex the ankle during the swing phase of gait. Foot drop decreases gait quality, limits mobility, increases fall risk, and greatly increases energy expenditure during walking. Traditionally, foot drop is treated with passive dorsiflexion support by an ankle foot orthosis (AFO) but today, functional electrical stimulation (FES) devices are available to promote comfortable, effective active dorsiflexion during gait for patients with central nervous system (CNS) causes of foot drop. The WalkAide® FES System’s unique control system, with tilt sensors to trigger electrical stimulation during the swing phase, can help normalize gait and thus optimise safety, cosmesis and energy efficiency in people with stroke, multiple sclerosis, cerebral palsy and a wide range of other CNS disorders.

My Walkaide should be arriving any day now and then I will go and get it fitted. I will post periodic updates for anyone who is interested in my progress. Happy trails to you!