Wednesday, August 29, 2012

The Metabolic theory makes too much sense!

Fortunately for me, blogging does not have an agenda. I had to go food shopping today which requires an early morning departure, lots of inner speak regarding energy, to use a mobility scooter or not etc...

So, here I am after putting food away, folding up bags and gathering myself. A little tired but fortunately it is not a hot day, in the 70's and gorgeous. I always feel so accomplished after making the shopping journey!

I am not sure where people really stand on the metabolic theory and MS. I know...I know we have heard enough about a lot without any real solutions. Pharma road has meant toxicity and people losing their lives over medication with huge promises. I was one of those people back in 1986 when I was first diagnosed. What did I know? Something was wrong and I needed it fixed so I could go on with my life. No options.

MS always means more questions than answers. Why more women than men? Now of course, it is all over the world so the whole thing about it being more in the northern hemisphere than the southern is ridiculous. People everywhere are getting this including kids. So we know it is in the gene pool. But why...why...why??

Here is the latest from Angelique Corthals, and a brief bio about her:

Multiple Sclerosis is Not a Disease of the Immune System

By Angelique P. Corthals
The Quarterly Review of Biology
Vol. 86, No. 4 (December 2011), pp. 287-321

This researcher and professor sheds a very different light on MS. With her research, most of the questions not answered by the immune theory are answered here:

I changed my diet a few years ago and have been well for four, almost five years. I am still finding out things such as sugar may be more of a problem than I realized. No known medication typically keeps someone with MS feeling well without horrible side effects and injection pains.

Please pass the word on this -- this is ground breaking news that we have been waiting for. In my life time there may be some treatments but for now, I am very happy living a healthy life style! Hippocrates would be so proud!!

Monday, August 27, 2012

My way to freedom!

Anyone with a mobility impairment of any kind will certainly relate to my day on Saturday! Now that I think about it, an impairment of any kind not just mobility, visual included. I saw a facebook posting from a friend with a visual impairment who just had a marvelous time at her state fair in upstate NY. Even though I was going to talk about a "block party" I went to on Saturday, my friend's posting inspired me further.

Picture the day -- hotter than hot, lots of people, noisy with bands in the parade plus another musical band. This sort of an environment is probably my worst nightmare. Or at least my worst nightmare all these years, until recently. First of all, why my worst nightmare? Let me explain that. My walking has been affected in my almost third decade (26 years) with MS. I have foot drop and spasticity in my left leg, an overall weakened state with vision problems and all the stimuli plus the heat, made everything worse. The days of negotiating crowds does not happen anymore. All this requires standing a lot, another impossibility.

Please understand, I was going to this event if I had to spend time figuring out how. So, I did.

I used my little mobility scooter which comes apart and is kept in the back of my van. The streets had been blocked off which meant I had easy access to riding along without too much interference. I knew the time of the parade and made sure I wasn't on the street. There were some "clunky" curb cuts which I sorted out and used ones that my scooter could manage.

Spontaneity always amazes me in situations like this one. Friends of ours had set up a small tent on their lawn in town and invited us to come and watch the parade from there! I could easily ride my scooter to that spot and relax a little. So, I was in a safe place there and watched the parade with some other folks who were part of our friend's family. The heat was tolerable because I didn't have to walk. It then started raining but the scooter was out of danger because of the tent. I watched fire truck after fire truck, parade after parade and was happy just to be in the middle of it all.

Once the parade was over, I got on the empty street and rode along looking at the different sales and booths along the way. Did I feel free coasting along in a little scooter. Who knew this is what my life would become. Sometimes I wonder if people looked at me with envy since my mode of transportation seemed preferable to theirs -- or maybe that's what I wanted to think! Really people were hot and sweaty but not me. Our car was parked nearby so I carefully negotiated bumps and potholes to make my way down the hill. As I write, I am realizing how easy all this really was. We even stopped in our local market on our way home, not easy to get into but David pushed me up a tall out of code ramp!

I came home not tired since I had not walked at all. And I really didn't feel badly about it either.  Importantly, I had a great day and hope to have more days like these -- it is so important to be in the world. I never think anything is impossible anymore. In the earlier days I used to put my scooter together but now David does that for me and saves me a lot of trouble.

The small town parade is what summer is about -- and I had really thought my days of enjoying the fun was over.

Please don't let life slip by can do this -- I know it can be hard as you battle all those demons related to things you could once do.

Try it and you may even enjoy yourself!

Friday, August 24, 2012

The safest diet for MS

This morning I finally got un-confused after being utterly confused about diet and MS. What plan to follow? Fortunately, I have adhered to the Roy Swank, MD diet which is the basic no meat, no dairy diet, based on the fact which is coming out now -- persons with MS have trouble with fat metabolism. So, Dr. Swank knew a lot in the 40's when MS was starting to show itself in large numbers. 

This morning I went through a site that has been recommended to me for a while but I am just tired out from keeping up with all this stuff and more stuff -- current guidelines on top of it all! This is the site:

The person here is an Australian by the name of George Jelinek, MD. He was diagnosed in 1999. Sometimes we need medical professionals to be diagnosed along with rock stars, performers and potential first ladies -- i.e the drummer from Iron Maiden, Donny Osmond and Ann Romney.

Okay, so what Jelinek says is what Swank says with a new findings "twist" on things. Remember Dr. Swank was very successful in treating hundreds of MS patients on his diet but back in those days a few things were just not known. For example, Swank was very liberal with his sugar. There are a number of baking recipes in his Multiple Sclerosis Diet book -- I have made most of them but they are on the sweet side. Jelinek improves on this but adheres to the low fat aspect of our food. Also, Dr. Swank recommended taking a multivitamin supplement everyday along with fish oil. More current day research is quoted by Dr. Jelinek where some supplements can actually be harmful. Dr. Jelinek is big on whole grains, vegetables, fruit, nuts and is not all wigged out about gluten etc. I think a person knows if they have an intolerance and can make changes accordingly. Personally, I wonder if all the diet books out there -- gluten free, low carbohydrate etc. are meant for the authors themselves. It is just so hard to keep up with all of this.

Wow, this was news to me! I think he quoted a prostate cancer study with a high percentage of men who died because of a full weeks supply of multivitamins. After sifting through all this I finally got to his recommendations for supplements for persons with MS. He is big on the B vitamins, particularly B-12 and vitamin D3. He also said that now when people are newly diagnosed their vitamin D levels are tested and they are given infusions accordingly. Apparently vitamin D has the same immuno-suppresive  properties as current day MS medication without the side effects.

Oh, how I wish I was just diagnosed instead of 26 years ago! Who knew about diet and supplements back then??

Look at his site if you get a chance. Not only is it comprehensive, it is well written by someone who walks in our shoes.

So, I will be making a few changes myself. I will stop taking the multivitamin, look for the B complex and introduce the D3. I know my multivitamin had 1,000 mg of D3 and some calcium in it. I take magnesium supplements anyway because it really helps with the occasional migraines and headaches I get. This by the way is covered on the pubmed site linking magnesium as a successful supplement for migraines.

All this now gives me yet -- new hope! Not that I wasn't doing well, this just adds to my ever full arsenal!

I do hope this has been helpful. You know I always thought the medical people were trying to kill a mosquito with a cannon ball when it came to MS -- and the clincher? Dr. Jelinek links MS to our current, modern day lifestyle and diets. Some people may argue this but in my opinion, some people are more sensitive than others in this regard.

By the way, I try to avoid sugar as best as I can and have introduced a small amount of nuts and fruits as snacks. Do I feel different? I think it's too early to tell.

Wednesday, August 22, 2012

Why I don't work (a traditional job)

Now this is a subject persons with MS don't like to talk about. If they do, it is definitely not a comfortable one. In my case, sad but true, I left the "workforce" at age 42. One day I could keep up and work and the next day I could not.

How does this happen?? It happened quickly in my experience. Please remember that so many of us have huge anxieties that accompany everything else going on, i.e. symptoms, confusion, changes etc. etc. So keeping this in mind this is basically what happened. 

I was at a point in my life when I thought I  could overcome all the adversity. I worked in a bookstore during a period when I had not yet gone to graduate school in 2001. This was also when I was on the interferon therapy. The bookstore was calm and actually fun. I could stand for long periods, ring up sales, answer the phone and look up books on the computer -- sometimes simultaneously. Normal? At that point I thought so. 

Small changes happened, not all noticeable and not all big.

Then a job with an attorney for almost five and a half years. I wonder if things would have been different in a more pressured work environment. Her office was chaotic but small and manageable. I was given enough "space" to think about my life after working there.

 I was still on interferon treatment. Had a list of side effects that kept growing.

Next, I found what I thought would be a life long career -- occupational therapy. I was an excited 35 year old. Of course I would work with persons with disabilities -- probably anticipating my own physical disability to come. I didn't just decide to go to a university in my state or somewhere nearby, I went all the way to St. Louis. There it was hot, very hot. We all know that MS and heat do not mix.

I continued interferon treatment which became harder and harder. My blood pressure kept rising but I kept taking medication. So now I was very anxious and medicated with something that caused serious side effects plus blood pressure medication side effects. The MS was continuing at its own pace. Here I was in a new place, with stars in my eyes and an extremely hard curriculum to add to the mix. I finished my clinical work three years after most other people in my class had. I finally got my master's in a field that I never practiced.

I was a mess. At that point I honestly couldn't even think. I tried working at another job, got away from occupational therapy and could not hold my own. I even used my scooter to conserve my energy which caused other problems. I was always "in the way".  I started making mistakes -- big ones. If someone distracted me I could not return to what I was doing. I started having concentration problems, easily distracted, problems shifting my tasks  and of course, always anxious. Employers don't have patience for this sort of thing, no matter how much we plead Americans with Disabilities Act (ADA)! You are quietly eliminated -- as was I.

Cognition or thinking skills are always affected in someone with MS. Even though verbal fluency is most often not affected. Now how cruel is that when you can't always function in given situations but you can out-talk someone or seem really smart?

So, now with the physical challenges and mental challenges in certain environments, I have resorted to doing things I enjoy without outside pressure. I use my occupational therapy education to make my own life easier -- chosen my own adaptive equipment, energy conservation tips and tricks, needs regarding accessibility, educate others about this debacle called MS etc.

I have not been on interferon since 2005 and do not battle side effects along with my other battles. Actually, I feel quite well now. Life is slower, more to my liking and definitely more my own pace. I stay in shape, watch my diet -- strictly low fat without processed anything. No heavy medications. Anxiety is built in to most of us with and without MS but I know that and deal with it as best as I can.

One thing from my occupational therapy education that I remember very well is that human occupation is not only about working a "traditional" job it is also your everyday roles. I am a daughter, partner, sister, aunt -- these are also my "occupations" and therefore as important as working what others call a "real" job!

Monday, August 20, 2012

Honestly? You mean that's not MS....?

Look at the morning and the magic it brings with it. Only nature can make the sun fall in these symmetrical blocks of light -- with the beautiful birches just waiting for the rays to fall on them.

I pinch myself, this is my back yard!!

Morning magic

Abundance -- fresh squash, garlic and new potatoes, all these just took off after the recent rainfall. This produce makes me feel like I am the richest person on earth!! 

Now for the story I want to tell you.

This happened on Saturday and I still can't get over the way this whole thing unfolded. There is a lesson that goes with this and I know some of you will figure it out quickly.

It was around lunch time on Saturday and I had gotten myself ready to go to my monthly MS meeting which was at about 2PM. David said he wasn't too hungry and neither was I. We were still digesting our late breakfast. So, around 12:30 we sat down to small pickings which included some fresh melon and some cookies I had made the other day. There was coffee left in my coffee pot so we finished that as well. David went off to chop his firewood and I collected myself to take care of some business before I had to leave.

Now it was around 1:15 and I normally leave around 1:30. So, as I always do -- I began my "trek" to the car. You have probably guessed that our grounds are large and I negotiate my walking slowly and carefully. I looked out in front of me and my vision seemed odd. Very odd. I was seeing too many trees, there were two for everything I saw. I just ignored it got in the car and was beginning to realize something wasn't right. I started the car and proceeded down the hill -- thinking I'm not sure what, except that my vision would be fine by the time I hit route 7 at the bottom of the hill.

I pulled along the farm with my heart beating a little too fast. I saw about twenty barn cats and knew there were only about five. Double vision or as it is known in the MS world-- "Diplopia". Oh my goodness, so suddenly double vision? It couldn't be happening. Not to me and not now. I reached for my cell thinking David would solve my problem. He was in the woods, no reception there besides what could he do? I just knew that if I kept driving, I would have to keep my right eye shut to make the vision single. I sat there hoping that there was no road construction going on.

I continued to drive with one eye shut and squinting to give the eye a break. I started shaking, not sure whether it was because I was taking chances or whether I now had this bizarre symptom after twenty years!

The highway was dicey. I kept my eye on the car closest to me to get focused.  In a harrowing twenty minutes I made it to my destination, shaky and upset. I sat down and told people what was happening. Naturally, lots of concern. I couldn't even read the posters in the room! A very logical friend said to me, "what did you do differently?" This may be something else, not MS. I half listened because the "MS fear" had my 110% attention at this point.

About an hour later, I could read the posters in the room.

You guessed it! Blood sugar! Melon and cookies without a trace of protein was my snack -- all sugar. I learned a huge lesson here. Not all symptoms are MS just because you have MS. Hypoglycemia can cause all those symptoms including visual changes and shaking. I thought I was just nervous trying to keep my car on the highway in bright sunlight -- which was true but something else was at play too.

See those beautiful veggies on top? They as well as fruits can have lots of sugar too. Although it's natural sugar I will be checking the glycemic index to find out which produce has how much sugar. I could have had a handful of walnuts with that little disaster snack but frankly, it never occurred to me!

Please be mindful of how you balance what you put in your body -- and no not everything is MS. Other things are happening simultaneously. Also, don't do what I did -- do not drive if you feel at all strange. Remember, there are other people on the road with you.

Friday, August 17, 2012

Funding the WalkAide

It's a grayish morning, perfect for contemplating whether I just dreamed my wonderful breakfast or I really ate it. We had fresh spinach from the garden and eggs. Fulfilling to say the least and healthy at best! The eggs were cooked on top of the spinach so the end result was a beautiful combination of the two. Not a Swank recipe but very Swank in all other ways. Just make sure to use oil and not butter and mind that the yolk has about 5gm of fat.

Ah, all is well and I told you that I would let you know how I funded the WalkAide and how I use this expensive "tool".

The cost according to the folks I dealt with came to approximately $4,799.00. Now that's a lot for anyone. Many of us live on fixed incomes and if you're like me, there is no real savings. So, off I went on a hunt. My first stop was the MS Society. Come on folks, they are in place to help us. Fortunately, I had a contact person who was very easily available by email. I started my dialogue, she sent me the standard financial form, I filled it out and long story was that the Society gave me $2,000. Then she helped me target some charities. I filled out more forms -- some of which got lost but nonetheless, I came away with close to $500.00. I will tell you, I got a little tired of paperwork. One thing I should mention is that most insurance companies don't cover it but keep checking back because that is changing.

Other folks wanted to help me but I held them at bay. The one person who refused to listen was my best friend from college. Before I told her to back off, she sent me a check in the remaining amount. So, essentially I got half the funds through NMSS and charities and the rest privately.

One thing the WalkAide people do is let you try out the device for a couple of weeks at no charge. This is when I gathered up the funds as I made the decision to get the device as I watched my circulation return.

My WalkAide

That's the story there. The little black mark in the picture right above the unit was so that I could learn to line up the unit to get the right reaction from the nerve. I got used to the placement quite soon and easily.

I put it on first thing in the morning, walk around my driveway, porch, look at my garden, check the mail and then take it off for the rest of the day. Sometimes, but only occasionally I wear it when I go out in the evening. With some clothes you don't want to wear a brace, even if it's small.

Hope this was helpful. Let me know!

Thursday, August 16, 2012

The skinney on the WalkAide

My World
Talk about beautiful! How can I not enjoy this every morning or just everyday! I live in beautiful upstate New York where the vistas are  breathtaking and just so lovely. Now would you not want to take a walk or a hike out there? Now you see my dilemma.

It is crazy that most of us with MS have walking issues of one kind and another. Although I will tell you just feeling healthy has become pretty important in my life as I continue to maintain myself through the Swank diet, vitamins and low dose Naltrexone and nothing else. So far almost five years of healthful living.

One day as I did my usual research on the internet -- by the way, be careful what you read. Look for reputable sites and trustworthy information, not Joe so and so discussing their version of the latest miracle. Anyway, I had heard of Hanger Orthotics and all their work with prosthetics. Quite amazing really. Our niece works for the company as I later found out. So, I pursued my search and finally ended up at the site for the WalkAide. It so happens that we have a local facility nearby that fits persons with various disorders for the WalkAide and other prosthetics. The unique quality is that these devices are neuro-electric and work with stimulating nerves to evoke responses. When I went to see what this was all about, they put a device on my left leg with foot drop to see if the peripheral nerve would respond to lifting my foot. As those of you with foot drop know all too well, this foot lifting is an impossibility. So, the peripheral nervous system -- or the "other" nervous system, not the central nervous system was intact and therefor the WalkAide "might" work for me. Let me tell you, my heart was in my throat as I sat and watched my left foot twitch, something it had not done in about a decade. I had been wearing that horrible "cast" style ankle foot orthosis for six years. My skinny little leg had atrophied over the years and my circulation was non existent as the technician and a few others stood around to view this spectacle!

I was indeed a candidate for this wonderful device that cost close to $5,000! I was not going to think about that just yet. Finally I was fitted and a long time was spent "calibrating" the device to my specific gait.

There are a few things I learned along the way:

*The WalkAide is only a tool, not the answer. In other words, it works with you and for you but it will not bring back the old walk. If you have spasticity in the limb you are re-training to walk, just know that spasticity  will work against you. Try bending your leg or limb as much as you can so the device can work better.

*Slow..slow...slow, please do not think you will run or walk a pace that your walking partner is maintaining. If you move yourself too quickly and the stimulus has not kicked in yet, your foot is in neutral, just like a car. There is always a "wait" period. The device has a tilt sensor and works but don't challenge yourself or it by not paying attention to the impediments in front of you, like rocks and such.

*Ladies, you might be regaining your beautiful (once beautiful) legs back but please DO NOT use a razor to shave the leg in question. If you put the WalkAide electrodes over irritated skin like I did, you may have scarred your legs for life. Not to mention chance for infection, keeping the WalkAide off your leg for healing, etc.

My WalkAide
Tomorrow, a little more on how I funded my WalkAide and how I use it. Hope this was helpful to those of you thinking about this option -- yes, I recommend it!

Wednesday, August 15, 2012

My Story

Cooperstown New York, 2012

To think this beauty exists literally twenty minutes from my house!! I post this because FINALLY I am noticing these beautiful panoramas that are around me all the time.

My MS had made me oblivious of so much of my life. My life is beautiful and it is time to start living -- woohoo! I began my story like so many of you. Emotions, medications, despair, loss etc. etc.  Stop and see where you are or have been -- please! Anyone you talk to, medical professional or even one of us will tell you of this horrible "entity" that continues to rob us of our life. Hey, I am not denying any of this. What I am doing is letting you know how I have managed in my forties to turn things around for myself. Oh god, I have not had some religious awakening or anything like that, I have finally become a little more sensible.

Diagnosed quite young at age 20, I began the rockiest road of my life's journey. Think for a moment, what does anyone do at that age? I'll admit to belonging to the "late bloomers society" and therefore not knowing what life meant at all. My parents were my everything and soon after the medical professionals in my life. They were so kind and understanding, what else could they do?? I didn't even know how to think outside the medical "box" -- what else was there? If Dr. Roy Swank were someone I had even heard of, I probably would not have known what to do. Now I do.

So, I took steroids, I took Lithium, I let them poke and prode and do lumbar punctures on a cold metal table, I lay in hospital beds waiting and waiting to feel better. Truth is, I never felt good. My peers were out planning their lives and here I was -- over medicated and confused. This went on for years. Fast forwarding a little, I was on interferon from 1995-2005. I did reach a point when I thought I could or rather must make some decisions. This would be in my thirties. So, I went to graduate school in 2001, got a master's in occupational therapy, why? So I could work with persons with MS! That was my dream. The interferon medication almost caused me to lose my life. Listened to everyone's reason why that happened -- got out of the ER and sure enough, another episode in 2008. That was it. I had to listen to my neurologist about how I needed to go on Copaxone or something else. Drop foot was in full swing--no pun:(

Then, I began to THINK.

Here's what happened. I discovered Low Dose Naltrexone (LDN) -- online, one day by myself. The tears started filling my eyes. I had been using a scooter. My neurologist would not give me or even listen to me about LDN so I moved on to a doctor friend.

That's pretty much it. I have been on LDN ( since 2008 and discovered the Roy Swank diet. I am not sure what attracted me to this genius who helped hundreds of people with MS in the 40's. I think it was his philosophy. If you put the Swank philosophy, diet and mind food allergies and recent sugar research, I think you have the current research! Honestly, I could not believe how off track I had gotten with my diet. Everything was wrong. So, I changed all that.

I have remained relapse free since 2008.

There is a minority of us who have started thinking this way because you know what? Medication is NOT working, period. A good diet (Dr. Swank), low dose Naltrexone and a multivitamin for four years has kept me well.

I use a WalkAide to exercise my foot and a much smaller brace to help with walking. I finally have my life back, thank goodness for that.

Tuesday, August 14, 2012

An Introduction

    Hi, it has taken me three years to set up a blog! The reason is that I always fancied myself a writer and not a blogger until someone "picked" me up and I was in a blog myself. I thought that was sort of cool and whether or not I was ready, my message and I were both in the world.

     So here I am in a blog: This was an awakening for me. 

     I have so many messages and stories that I have collected over two, almost three decades with MS. Some of the stories are funny, others sad but they all have a message. It is important that I talk about some of them because it is through hearing from others that I will learn more about others and myself.

     I guess one could consider this a diary, more like my stories -- everyday stories and of course the all important eating for MS. I must have done something right because I have remained well for four years and over this time find the need to engage in the world again. I would like to share these stories, my little daily routine and what it means to find one's own "normal".

     I will do my best to keep writing, it certainly gives me purpose because now I am ready!