My Passion...

I truly believe that if one pursues one's passion in life, things come together in a way that is simple, mindful and beautiful. Does that sound like a cliche? Think on it. If you truly believe in something, you are at your most natural and most efficient. Ideas come and make sense and maybe even make an impact. In life that is what everyone tries to make happen -- some do, others don't want to and many others try.

Lately I am getting the feeling of life going by me and that I am not keeping up. Now it is Christmas and I spent the morning in my robe! Tomorrow is another day but I want to change it from being just "another" tomorrow. I have a list of things I would like to complete -- just in time for New Year's resolutions! I have been working on a book FOREVER. It is mostly written, well about 100 pages and I just need to complete the rest. This is the interesting part but I seem to be stuck just living life. When you have MS, just living life is a full time occupation!

My book will have a different tone than everything else I've seen on MS. I just finished reading a New York Times review of the book Brain on Fire. I am carefully trying to understand what the reviewer thought of the book. Ultimately I realized that it is all about your story. But there is that part about not getting too caught up in misery, sorrow or even narcissism. So one has to carefully construct the story without making the audience slog through all your baggage. Difficult to say the least. So ultimately I have to tell my story honestly and be mindful about my MS and non MS audience.

You know what the hardest part of pursuing my passion for writing this book is? Just getting started where I left off. After about a week I've nailed it down pretty well. It is not that I am lazy or unchallenged, it is that I need to pull out the same discipline that I've used at other times in my life and just WRITE! It helps to have that goal in my mind too. A finished book with my story for so many to see and so many to possibly help understand this insidious debacle called MS.

My book consists of three parts: I. Life before MS (yes there was a life before), II. life during diagnosis and III. life after MS (yes, there is such a thing). I am stuck on part III. And this is the most marvelous part! I might be a little hesitant to write about this part because maybe I never thought it would ever come. I tell my audience how I got here through long labyrinths and tunnels. Anyone can do this, all it takes is a bit of direction or in my case just knowing what to do. People, especially young people might want to know how to live a relatively normal life because I didn't have anyone to tell me it was possible. In the process I lived through damage caused by the condition simply because I didn't know any better. In other words, how to live more healthfully, looking into research that was never reported to us instead of looking for the answer in a pill. Well, I better get to the book, time is wasting.

But as they say, better late than never!

Mindfulness meditation & my MS

I write my blog posts because it is how I can gauge my current mental and physical state. I have lived with MS for a very long time -- 27 years -- this December 25th. I can honestly tell you that life has taken me through turns, some instructive and others destructive. I am also trying to write a book about my life with MS. My book will consist of three main parts, life before MS, years after diagnosis and life after MS. Yes, there is life after MS. I believe now that my whole journey took place as I searched and searched for answers to find none. Having emerged from this long tunnel, I now am living life to my fullest. The book will talk about all the mistakes and ultimate advocacy and happiness in finding my own voice to handle some very difficult times. I have re-discovered life and am not moaning about what has been lost.

When I question my purpose for being here and what it has all meant up until now, it is to share with you my lessons. Knowing that one's MS is not like another person's MS, I speak of my own experience in hopes that everyone will have something to gain -- even people without MS!

I have come across something very interesting within the last month. Having heard over the years how only meditation will calm my mind and anxiety related to my life, I have made a wonderful discovery -- "mindfulness meditation." This is different from what you might think of as meditation. Honestly, I am not one to sit in a corner, focus on a mantra and let all thoughts leave me! That is what we all think of, right? Almost like a waste of time that I might spend doing something useful. Mindfulness meditation is not that at all.

Let me explain how it works for me.

The idea is not to ruminate. It is possible to shut out all thoughts about the past and the future by focusing on the present only. How to do this? Look at your environment, all the things around you....each one of those items can take up observation time. A cup, a pen, a plant anything...just stay present, with whoever else is around you as well. An example, friends had come over for lunch the other day. Normally, my attention is everywhere but around the table we were sitting around. I would start thinking about something that happened two days ago, something irrelevant to my company who came to be with me. I tried the exercise that I had been reading about but had not tried yet. It is almost as though I trained my brain to just be at the table. I focused on everyone there, asked pertinent questions, discussed issues that came up and was a far far nicer person! My company was very familiar with the "old" me being distracted all the time and I finally mentioned being mindful. Then the reactions came and I saw that they noticed the difference.

This article illustrates how one can really feel the benefits of this:

 http://www.sciencedaily.com/releases/2011/01/110121144007.htm

More than anything, the stress in my life is reduced mainly because I don't waste time and energy thinking about things that don't really matter. Most of it is imagined anyway. So, every minute I stay in the present is valuable energy saved!

Sometimes it can be hard to focus only on the present. There are a few tricks to stop your mind from whirling around -- for example focusing on the breath or counting to ten without other distracting thoughts intruding. Personally it is hard for me to focus on the breath but I do the counting -- starting over if thoughts come in. Most important is to not judge yourself or the situation. If thoughts come in, they come in. Let them, just know they did.

This has really worked for me. I also don't get upset about things that haven't happened yet. You may be surprised at how keen your attention really is and how you think and say things that never had a chance to come out with all the unnecessary thoughts coming in.

It is as though my brain needed something to tell it what to do. Isn't that the case with most things in life?

Talk About the Process

MS and anxiety is something that has interested me for a long time. When we talk of anxiety, we think of all the mood disturbances, psychiatric issues and such. As always different people have different things that they consider as being anxiety. Medical professionals tend to lump a lot of people into the "generalized anxiety disorder" category, or GAD. Along with this comes a host of medications to treat this, anti-depressants and selective serotonin reuptake inhibitors (SSRI). I have taken SSRI's for what we thought was a form of depression, anxiety or something like that. Sometimes I don't think even the professionals know what is always going on. I have explored this topic extensively and keep finding that the popular rhetoric seems to be that MS is a baffling condition that often  progresses so no wonder people get depressed and anxious. But we all express this sentiment in so many different ways. Let me talk about me for a moment.

I was diagnosed at age 20, in college. I was an active 20 year old, very athletic and out to find my place in this world. Then you tell me I have something I cannot even pronounce. I continued on, little broke my stride until many years later when not only my stride but my spirit was broken.

I picked up the pieces and continued on but things were not as they should have been. So I started to get anxious. But all this time, my brain was being "zapped" in certain areas that was in fact affecting my emotions. Now I think back to how I single handedly tried to bear this brunt. Almost 27 years later, I am finally devising a plan to handle the way my runaway emotions are expressed. Because of my anxiety and where the brain lesions are, I have a case of uncontrollable laughing and sometimes crying. Something inside me starts and cannot stop. This can happen at any time, anywhere with anyone. The worst part is, I am not doing this, it is almost being done to me.

We were at some friends at Thanksgiving. Someone said something that began that ripple inside me. Then I said something that in all honesty was not that funny but the uncontrollable laughing began. Something in me decided that I had enough of this behavior that surfaces only to embarrass me. So I stood up and said needed to use the bathroom and everyone assumed that is why I was laughing! I took a break in order to stop the cycle that had been started. It worked. I came back out and had no more feeling to laugh. We all started talking normally again.

The other morning we were having breakfast with friends and I practiced my mindful meditation and paid very close attention to what people were saying. By doing this, I got involved in conversation, very involved so my mind did not wander to places other than the table. If I would have felt vulnerable in any way, I would have voiced that I was getting a little anxious or just taken a walk to the bathroom or anything to break the pattern.

I have found by suppressing feelings, they come out with greater force. By either breaking the pattern or talking about the process or what was happening was an honest way of dealing with it. I don't seem to be able to get rid of this so these techniques are the next best thing.

Gastroesophageal Reflux Disease (GERD)

The prayers to my ongoing respiratory condition have finally come to light. GERD is the term for acid reflux also known as heartburn. People have different symptoms within this diagnosis. Some people will pop a Tums or do some antacid and can move along, others may have accompanying asthma that can worsen GERD or the other way around. How did I make this connection? Actually, this connection was made by a doctor years ago but we just started treating the asthma symptoms. When someone is diagnosed with asthma at a later age, in my case in my forties, GERD is often looked at as an accompanying factor.

Always at night the symptoms start. That is another telltale sign. When I lie down to sleep, everything becomes worse. I start going into bronchiospasms, have trouble breathing and will start making gurgling sounds and a very loose cough. Let me explain what GERD is, how it is treated and some of the symptoms.

Reflux is what it sounds like. The stomach acid is constantly "splashing" the lower part of the intestine. In this condition acid in the stomach rises up into the esophagus. This happens because the valve separating the contents of the stomach from the esophagus  doesn't close properly--the lower esophageal sphincter (LES) - a muscle between the esophagus and stomach - relaxes, allowing the acidic contents of the stomach to splash back (reflux). Certain foods are implicated, such as fats, tomatoes etc. This is a confusing situation for me because my diet is pretty low fat, no junk food including soda (rarely). I do love tomatoes and look forward to when they come out in the summer. When this acid causes problems with the breathing tubes, I feel asthmatic symptoms. I do question whether or not I have asthma but can safely assume all this is interrelated.

Gastroesophageal Reflux Disease (ncbi.nlm.nih.gov)

There are all kinds of over the counter remedies for GERD. Actually, the pharmaceuticals make a mint on some othem particularly since one is pushed into doing anything to feel better. Of course there is Tums, Prilosec, Nexium etc. and more prescription based drugs like Protonix.

So, what finally clued me in? I couldn't tolerate toothpaste! Searching led to answers and many others who couldn't tolerate toothpaste either. I finally put two and two together and realized that since I am alright in the daytime, I will make a few lifestyle changes. I switched to baking soda as my new toothpaste and introduced some fermented foods into my diet during the day, such as sauerkraut, pickled cabbage, pickled tomatoes etc.

The biggest discovery came last night. I kept reading about the "banana myth" which is introducing a banana after the evening meal. I thought "sure"!!! a banana?? Guess what? It worked like a charm. I had a little bit of wheezing but no breathing problems. So, I didn't have to use an asthma inhaler to sleep which by the way has been pushing up my blood pressure.  They say pineapples also help. I think they will be on my next shopping list. But the banana had me stumped particularly since it could deal with all the acid (tomato sauce and wine at dinner) and let me sleep.

No medication -- a banana a day, which is how I want to keep it

Internal motivation and loss

Sandy came and went. Unfortunately there are other places like NYC, NJ and also CT that are still dealing with the aftermath. The skies are gray here and it will rain for the next couple of days. Some people have been so uprooted, lost homes and loved ones that dealing with a gray day is not that hard, as long as it is calm.

There is always another person on this earth who is experiencing terrible things, like the victims after Sandy and other natural disasters or starvation in Africa and here, wars and fighting around the world and so on. In my own life, I try and "maintain" myself as best as I can given my own circumstances. After all, that is all I can do.

Things that help me to stay balanced involve staying in control of things as best as I can. You know, I amaze myself. I can stay in my house for days and not get bored. My mind is always learning things and sometimes too much. For example I just took a walk to the mailbox and had an interesting thought. My WalkAide is programed to lift my left foot every time I go to take a step. So, I thought I would pretend by telling my brain to "lift" every time I took a step, just like I was doing it naturally. The brain knows you are doing this but maybe, just maybe it might learn to redo this activity that it once did. So now every time I walk, I tell my brain to lift my foot as if I was doing this and not the WalkAide. Hmm...my point is that I am internally motivated to do so many things. I don't have to go somewhere else to get stimulated to live my life. Is there something wrong with me? I don't think so. I must be motivated differently than some others.

I am just grateful for what I have in life even though I have lost a lot. So, people can experience loss in many different ways. The way we handle this loss is also different. NPR just had a piece on about stroke patients and constraint induced movement or CIM. Talk about being internally motivated. People who have had a stroke go through long rehab sessions with therapists who will constrain the able limb and ask patients to try and move the challenged limb. Talk about feeling helpless. I know what that internal dialogue feels like. No matter how much I try, the damaged highway is not allowing signals to go to the limb, in this case my foot, to tell it to lift. You can tell it until you are fed up, think of stroke survivors. Their loss is great, just like mine but there is no CIM in MS. I wonder why? It is so similar. Sometimes I feel like my body on the left side is weak and heavy, not like the other side.

Is all loss the same? Of course not but there are elements that are similar. Now MS and stroke, these are self-losses, or for example  my young friend Kate who is blind. All loss has some sort of tragedy attached to it. Whether Sandy or death of a loved one or one's own health.

Loss is loss but internal motivation -- when the going gets tough may be my magic bullet.

The kindness of Strangers

I think humans are inherently kind. Of course one hears about high profiled criminals, animal abusers, sexual deviants etc. but if one gets lost in that thinking, the whole world seems bad. Women are not the only sex to get raped anymore but as woman we do have to keep our third sense active. But I did not mean to get into this subject really, I want to focus on the kind human part.

In my day, I have encountered so many attitudes and people with these attitudes. I have a disability and there are times when I need help. It could be as simple as moving a chair out of my way so I can walk without falling or  carrying something across a room or helping me carry my groceries to my car, particularly if the store is small but this happens even in a big supermarket. These are not big things, just things that I cannot do myself because of my mobility issue and MS. I write about this because more people have helped me along at times than I can count, only because they are kind. You know, sometimes it's not even helping me physically, it can be a nice smile or even a joke.

I used to dread going to the store or anywhere for that matter. As my disability progressed and reached a point when I needed help, it was terrifying not knowing how others would react. It is interesting how this unfolded for me. Over the years I went from being scared to learning what it means to meet kind strangers. I was in an awkward stage towards year 14 with MS when I did not need a walking aid but I wished I had one. So, people would look at me and visibly I looked fine, just wobly. The assumption may have been that I had been drinking but of course I had not. So, at that point I started mentally "mapping" my steps and using caution in situations where it was always second nature. Then, everything was different -- this took many years to happen and to get used to.

So, now I walk as though the left side of my body has been affected. I was no longer walking the delicate line of partial disability, no, I was disabled. That meant not only did I have to learn how to walk differently but learn to somehow walk. I am happy to announce that has happened!

My favorite story is about a man in his 90's. We walked into the supermarket at the same time and at the same speed. We slowly approached the sliding doors when he stopped, banged his cane on the ground and said, "here, let me open the door for you!" As the doors opened automatically, I smiled at him and said, "wow you must be a magician!" This encounter may not mean much to someone else but it made my day! Or the numerous times that people have helped me bring groceries to the car or unload things or even bring a scooter back to the store when I couldn't find handicapped parking anywhere because that would mean I would have to walk back to my car. The man who helped was behind me in the grocery line. The other day I asked volunteers, who were sitting at a help desk in my local medical center if I could use a courtesy scooter. An older man jumped up, showed me how it worked (all scooters are different), wished me well and told me not to worry and how he was happy to help. He was definitely happy to do his job helping people like me. None of these people had to help me. They did because they wanted to help. The older lady there smiled and said "we're here to help."

Is that what they mean by "paying it forward?"

Magical morning!

I am never awake before 7:30 or so. Today was the most amazing morning I've had in a long time. Since I have asthma and am frequently woken out of a deep slumber during which time I usually try to figure out how to somehow get back to sleep, I never see the dawn! But this morning was an exception.

I went through the usual coughing and restlessness which frustrates me and of course David. But today, I must have gotten enough sleep during the night that I threw off my covers around 5:30 and announced that I was getting out of bed. Such uncharacteristic behavior! David must have thought he was still dreaming. I stumbled my way into my study, checked my email, put on my brace, changed my clothes and headed downstairs. I made coffee and while it brewed, I grabbed my cane, hat and a jacket and YES, went outside. It was barely light outside and the birds were not their usual noisy. They must have been shocked to see me! We have a new driveway, all even without dips and potholes so I knew I was safe.

What made me do this you ask? Not sure except to say that I must be feeling well to embark on this adventure. I went up the new driveway and then carefully on to the road. Our early neighbors hadn't left for work yet and I knew as the light came up, I was safe on the road.

Cracks in the road

While I walked, not far but enough to get my heart pumping, I of course thought of all the ways to improve my walking. But then I focused myself on walking safely, which is why I wore my brace and not the WalkAide. The actual road can be tricky in spots and I would just save the WalkAide to exercise my leg on the driveway. It would be so nice to just walk without thinking but anyone in my position or long term MS can understand what I mean. Foot drop is essentially a paralyzed foot waiting for "brain orders" to lift the foot -- which does not happen, so however one puts that foot on that uneven surface, it better be secure enough to not sprain or "roll". And this whole road goes uphill. Yikes! Well I got over that impediment and proceeded up the road to the first set of trees on the left. In spite of all the safety issues, I enjoyed the quiet time. And I actually relaxed -- I mean really calmed down. That itself was worth the adventure. For someone with mobility issues, this is a nightmare but I am here to tell you that should never stop you from getting a good walk in. Be careful and watch your steps but do try, you will be glad you did.

More cracks....

Yesterday I went to my doctor and she asked if I exercise -- never an easy question to answer! Yes, but not the way you do is what I should have said but I told her I do housework, laundry etc. and of course climb stairs at least 10-15 times a day. Would you consider that exercise? Considering the effort involved when you are trying to "maintain" yourself and the task at hand, of course! I don't go to the gym or ride a stationary bike, I don't have to. My day is productive, especially today since I walked in the wee hours when others were not quite out and about, it gave me such a sense of accomplishment. These are my accomplishments, no one else's.

But one thing, if you decide to make your own exercise schedule, make sure you rest in between. If for no other reason, it will give you more energy to do more! Plus not bring you to the point of total fatigue, which is not what this is about, it is about vigor, pride, endurance, strength and of course, accomplishment. And when no one else is stirring it is only you and it is magical.

Why are social situations hard for us?

This topic has been showing up a lot lately. Or is it because I'm reading more blogs posted by others talking about this? I think the number of reactions, attitudes and theories about this subject is as diverse as the number of people who inhabit our universe! That is a lot of people.

Is it that we feel inadequate in some way? Just physically getting to the same point as someone else can most definitely be harder. Does our disability, whether physical, cognitive or a combination make it difficult to feel in "control"? I think that one may be a no brainer. When old people hold the door open for you or ask if you need help, well that is just plain hard to deal with. Even within our own population we have variations and differences. So how the heck do we expect anyone to get it?

Chances are there are many similarities in the way most of us with MS feel about being out in the world. A friend once told David that "she does a lot for her condition." Not quite sure how to take that. The other day my neurologist told me that I looked wonderful and I do think she meant it, sincerely. But complements always go through three phases in my mind: 1) Oh I am happy to think that I can do all this with MS 2) Maybe I don't appear as disabled as I think I do 3) I am accepted. Wow, all this for one complement?

Let me describe a social situation I was in recently. It was an art opening for a friend along with others exhibiting their work. I had on my brace and not my WalkAide knowing there might not be too much walking involved. Lots of people milling around, lots of hellos, hugs and chatter. Right there my nightmare started. I don't seem to fixate on a particular target and therefore miss most things. This is because the vision cannot be selective and I miss things. OK, so I missed a lot of hellos, people probably standing in front of me who I missed plus too much chatter. There is something about too much stimulus in the environment that throws me off. All this involves cognitive processing, that neuropsychological area we don't always understand.

I found a place to sit down. This enabled me to view people at my own speed -- that is huge. I let people come to me, I did not go to them. People who wanted to chat came to me. I was able to slow down the rate of my partially non functioning brain by being kinder to it. So I talked to who I wanted to talk to, looked at who I wanted to look at, listened to certain people and talked only to a few. The terrain was uneven so the brace was definitely better but I wished I had the WalkAide as a friend literally had to haul me up a hill to the car.

I learned a valuable lesson here. It doesn't matter how well prepared you are, something will always trip you up (no pun!) So do the best you can because just getting out there is more than half the battle.

Round and round we go....

Sometimes I get tired of reading things related to MS. Why and how people end up with this intricate non balance created by a combination of genetic and environmental factors, we continue to puzzle over. We continue to puzzle over new things published, old things published, keeping our sources respectable, etc. but nonetheless do we ever arrive at a point where things seem believable or even manageable?

Should we just stick to whatever works for us and live our lives? Deal with symptoms that continue to plague, make it impossible for me to join the workforce? But knowing this, I just get on with a way that works for me. That seems like a reasonable approach until inquiring minds need to go just a little further. Why not leave well enough alone? For example, my mind has embraced the metabolic theory and how food affects my MS. When I read Dr. Swank/ Dr. Jelinek's explanations and discoveries, I stuck with that. It sort of nicely aligns itself with a metabolic way of thinking.

 Back to inquiring minds -- then I just saw this: http://www.sciencedaily.com/releases/2011/10/111027112520.htm

Here we are, back to diet. I need to stick with this way of thinking and not get frustrated with other scientific explanations of one kind and another. Sometimes I really wonder if these medical grants are useful to scientists because I see them just going in spirals. Some theories have really stuck and the same reasons given over and over again about how the northern latitudes have more MS than the southern. But know what? that is all changing. So stop saying the same thing over and over. Back in the 1940's Dr. Swank in his much ignored research, explained the cause for this distribution of MS in the world. So enough of all that.

The Science Daily article  (the link above) goes into the flora and fauna of the gut. So now MS is triggered by intestinal flora? Not just any intestinal fora -- "intact" intestinal flora.

First I thought this was the spiraling scientist but then it occurred to me that persons with MS do not have intact gut flora which may be why we cannot eat like everyone else and are always prone to some type of allergy. So, the gut flora probably only responds to a particular type of diet? This is me thinking.

Maybe that is why we respond better to a low fat type diet, no diary etc. According to that article, the intact flora started activating all sorts of immune reactions. But mice without the intact flora did not have these reactions!I wonder if that's why Montel Williams juices all his meals -- in other words he keeps it all simple.

I have started thinking the same way. I do not eat anything processed because an "intact" intestine could probably deal with that and that is what I might be missing?

So, keep it simple, work with your system -- i.e. work with you and don't let life go by. You are living, just differently.

MS is beatable!

I took a few days off from my blog writing schedule and now I come back with the same message, a little more determined! What is my message you ask? That should come clear by the time I am done.

I am in a place that I did not think possible after 26 years of living with MS. No one has said but you can categorize me as someone with secondary progressive MS or SPMS. My neurologist ho's and hum's about what to call me. My EDSS (disability score) would of course point to SPMS. But other things don't always fit the profile and some most certainly do. For example, my friends are saying things like, "you seem better" or "cognitively you are definitely more on track" and "no one can tell if you were just sitting!". I really started listening to these comments and frankly, I will settle for just staying where I am! I could live my whole life like this.

Why are my friends saying all this? Because at one time things didn't look good for me. I was getting progressively disabled, my thinking skills were certainly not up to par, I could not listen and focus on a conversation -- you know all those things that one considers normal functioning -- were not functioning. And everything was getting worse.

One day I found Rebecca Hoover's blog and she featured a story on me:

 http://intelligentguidetoms.wordpress.com/2012/08/11/another-great-story-shows-its-never-too-late-to-start-beating-ms-with-ultra-healthy-living/

All this started things rolling for me. Someone was actually listening to my story and what I had to say. You can beat your MS! Although things may never be what they once were but with lifestyle changes and ultra healthy living, as Rebecca calls it and so do I, you can control this mess. Wow, it takes some getting used to because you actually start to look and feel better.

This morning I logged onto Facebook like I usually do and saw that Rebecca mentioned my blog in her entry! I am just so thrilled and hope others will start listening to what we have to say. I follow the Swank/Jelinek way of thinking. Although Dr. Swank has passed on, Dr. Jelinek continues his path with newer modifications. God bless these men and their dedication to the cause. Dr. Jelinek of course walks in our shoes and has MS so he can add personal insight.

A very informative website is, http://www.overcomingmultiplesclerosis.org/ This site is packed with evidence based information. There are healthy recipes, medication updates, other bloggers and a nice Q&A page.

For those of you that think it might not be possible to live again, I suggest you start there. Make a plan. Read what others are saying. Talk to your neurologist. Make some changes, specifically with your diet and supplements. The Overcoming MS site will begin to guide you. I don't think any of us have time to lose, start your change in thinking.

I feel like a salesperson! And believe me, I couldn't sell my way out of a bag! There is nothing in this world that I feel more strongly about.

Vitamin D3 what does it all mean?

I really love having health resources at my fingertips. The good thing about that is ready information, quickly, no waiting for my queries. The hard part about that is, there is just too much information out there. I don't trust all sites because frankly not every one is aware of everything!

Vitamin D3, also known as cholecalciferol has become such a buzz in many conditions, not just MS. I also remember standing in a drugstore somewhere in the middle of Pennsylvania on a trip to visit David's family. My old GP had contacted me by phone quite a few years ago about this D3 vitamin. Naturally, we stopped in a drugstore along way after receiving her phone call to look for this vitamin. Would you believe about ten years ago, I couldn't find it? It was not as well known as it is now a days. Actually I remember the pharmacist looking rather blank when I asked him if they carried vitamin D3. 

Now, there seems to be no end to D3! I also knew nothing about this and looked for it half heartedly and ignored it for years. It is hard to read anything about MS now and not see the importance of this vitamin. The "sunshine" vitamin, surely I don't need that since I was born in the southern hemisphere, am darker skinned and must not need it, right? Then I started reading up on what it actually does. African American men are low in this for some reason and understandably so is most of the population since you need at least an hour of sunshine a week -- most people work indoors. Certain conditions just result in lower levels of vitamin D3 and MS is one of them.

Now why did I need this? For one thing, it helps regulate the immune system, it is a moderator. There are other complex workings related to allergies, thyroid and such. Now my attention shifted to reading more medical articles that support it's use. Along with more research needed, everyone supports taking the supplement if you have MS. How much does one safely take? We still are all over the map on that one. Dr. Jelinek says in http://www.overcomingmultiplesclerosis.org/ that 5,000 i.u a day is a safe bet. I have been reading blogs of others taking as much as 50,000 i.u and more a day. Vitamin D3 is a fat soluble hormone but safe at high doses. One can also get tested for the amount in one's own body.

Then today, I read an article in Science Daily http://www.sciencedaily.com/releases/2011/10/111024164701.htm that talked about a study where high versus low doses did not make a difference. This really is information overload! The Science Daily article talked about an evidenced based study, not some hunch. Then I read a blog about someone who miraculously got out of her wheelchair and can walk almost two miles without a cane after taking 50,000 i.u. for a few years. This is the bog where one can even talk to her doctor online: http://d3ms.blogspot.com/

So now the common consensus seems to be that D3 does indeed help persons with MS and a host of other conditions.

The great thing is that I can now walk into any drugstore and easily find the vitamin on the shelf. So we read  conservative articles, miraculous happenings and just daily stories of D3 being a good addition to one's daily regimen. 

How do I feel? I am not sure but I think better but I cannot explain it. You know how that goes!

It's Not too Late

Fall in upstate NY!

This view certainly takes me away for a few moments! Fall time is just an awesome time in nature and in ourselves.

You know, life is an amazing thing. I have felt as though I had to turn 40 before anything really registered. In other words, maturity, wisdom, clarity -- it took a long time for these things to resonate in my mind. This also extends to my interactions with others, personal triumphs and most importantly dealing with a chronic illness -- the one that seems to have baffled the best of them: MS.

I wish I could say that all MS is created equal. Hardly! All the literature emphasizes how no two people have the same symptoms, prognosis..."my" MS, "his" MS etc, almost as though one takes ownership of "their" MS. All this is definitely true. Sometimes I feel that anything anyone says about MS is something I have heard many times before! Interestingly it is just frustrating. Maybe those are my own feelings and not something others share. Maybe I've had MS for almost three decades and get bothered by persons who don't do their best to move on. Then there are some who move on in such a dramatic way.

I can feel "left out" when those persons with relapsing remitting disease end up turning their life around in profound ways. Those of us with progressive disease may have incurred some damage and disability and do not move on in the same way. I'll tell you though, I have read some unbelievable stories written by persons who go from using a scooter full time to walking and riding camels in the Gobi desert in Mongolia! I am not kidding you. How is that possible? Maybe they didn't have MS or my "type" of MS -- obviously not!

Why does this bother me so much if I am supposedly moving on? It must have to do with life being unfair to me, do you suppose? There are days when I think I have reached that important stage of acceptance. Then why do outrageous stories like the Gobi desert make me angry? I think it must have to do with feeling left out or the inability to reach the same end. Actually, I don't even know if this story is true. How can someone with heat intolerance ride a camel, stay on the darn camel and have enough energy to get around afterwards. Maybe this person doesn't have heat intolerance. There is a  percentage of people who don't have that problem. Just like some people are lucky enough not to have foot drop. I am purposely letting myself rant before I make my next point.

George Jelinek, MD and Roy Swank, MD were not important figures to me when I needed to hear their approaches. Actually, I had never heard of them. Instead I followed pharma road. Who knew? I thought medicines were supposed to help. That is WHY I am so angry. Now it comes out that interferons do not slow disability. I feel like I wasted ten years doing that, obviously since I am now secondary progressive.  Maybe others don't agree with me. I am not angry at others who are doing well, I am angry because I was too young and didn't know which path to follow. Had I started a lifestyle changing approach it may have yielded better results. How do I know? Because I am doing better than ever now than at any other point in this process.

I may not be doing as fabulously as people who implemented life style changes earlier than I did but at least I did. So even though I have symptoms, I feel pretty good. Maybe that is my life lesson. I pulled up my socks just in time. Others out there still can make some lifestyle changes and figure out how to do the rest.

My journey may be different than many other MS'rs and our condition may differ but I think we share a common goal, to be happy in life. There is a compassionate way to achieve that instead of trying various medications with horrible side effects.

It's not too late to try another way.

Being Mindful Everyday

Now, I didn't know that Jon Kabat-Zinn lives in Malaysia now. Did you? Do you know who Jon Kabat-Zinn is? He is the one who put "mindfulness meditation" on the map and is involved with the stress reduction clinic and Center for Mindfulness Medicine at U Mass medical school. He is also Professor Emeritus of Medicine. 

Dr. Zinn must be an extraordinary person. He is not only so well versed in mindfulness, he is also a teacher, scientist and clinician. Those areas make him sort of legit given our current ways of thinking in this modern world. I think his philosophy is not a difficult one to understand. Every moment to moment feeling and thought is what it is all about. Living in the present moment. I know...I know, not easy to do. However, think about the amount of time we waste living in the past which almost always causes sadness or feelings that may or may not matter. If we think about all the things we have to do or get done in our future, we get stressed, I do anyway. So, I suppose that leaves the present, doesn't it?

Amazon has one of his books at their site: http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122  They have a kindle edition which I might think about getting. 

You know, I have thought about embracing this way of thinking too many times. Look at how inexpensive this is to do especially when healthcare is off the charts expensive. I will certainly start expanding my knowledge base with reading his book. I know nothing of the man except he has all my attention with this way of being.

Aside from just living in the moment and keeping our emotions from de-railing or our psyche from falling off the edge, Kabat-Zinn's practice has tremendous impact in health and chronic illness. 

Before I proceed, a disclaimer, please just keep in mind that this meditation may not take the place of emergency medicine if the situation calls for it. Your healthcare providers should be aware of your involvement in this practice if you take it on.

Chronic illness if such a hardship for many folks. People live with things that may plague them everyday, so what to do? Everyone treats these things differently. Some people live with enormous amounts of pain, others live with a lot of energy issues that causes them to revolve around schedules to accommodate this. A huge part of this form of meditation, besides in my mind being realistic, is the old cognitive behavioral method of changing your thoughts. You know that saying, "you are what you eat," similarly "you are what you think?" I don't think that far off. You behave and act in ways that your thoughts are setting you out to behave! I know that when I get in arguments over silly things like politics, environmental issues and the like...my nastiness, resistive nature can be dictated by how steamed I am about something else! If I was already in a bad mood, you probably are no match for arguments I pull out of my head just to win an argument! Aaarrgg that is such an alarming way to be. Your "story" matters so little when you think about it. You need to have an impact by momentary interaction with relevant things, does that make sense? In other words, why would I try to make a point that doesn't matter in the moment?

Off I go now to live a little more in today and not yesterday or tomorrow. Let me try it -- it's all good!

To Do or Not to Do....

I am sure if a fairy walked in my door and asked for me to wish for something, I don't think I would say "get rid of the MS", I think I would say, "make me walk again." Well, there is no genie in a bottle in my life because I have to work hard at everything I do! Specifically, walking.

I have forever done searches on ways to make foot drop go away -- my searches yielded everything from the common orthotic options to a surgery that can correct this malady. Surgery, a simple option? No surgery is simple. A highly trained technician performs his or her magic and you can only hope they were not having a bad day when they work on you! What is foot drop? This is experienced by about 30% of people with MS, I believe, -- and in several others, including stroke, brain injury, parkinsons, cerebral palsy and other neurological conditions. What happens is the nerve that lifts the foot is paralyzed. So, your foot is paralyzed and you don't have a normal gait. I use a WalkAide to work the foot out because it is programmed to lift the toes when I walk. I also use a small brace that requires me to haul my foot around but prevents spraining a paralyzed ankle. This is how I have lived for over a decade.

So, then I read this:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2384039/  Naturally one's first response is to get excited. I am 46 and still have the ability to recover -- I'm not 76. This is a 2008 article and this surgery has been around for a while. I'm sure they have only perfected it.

So, that is the first stage -- I see the article, get excited and think about walking again. Maybe I could go on vacation and walk on cobble stones? Maybe. Hey I could even walk up and down the street outside my house. Walking quite normally and looking up at things when I walk and not down at my foot that could turn at any moment. Right? I used to do all this so why not again? I'm sort of young so why not live a little?

Now for the rub. Tendon transfer is what they do. They take the existing tendon that now pushes the foot down -- which happens to be just fine. It is the tendon that pulls the foot up that is the problem. They take this tendon (the one that works), I believe, splice it, thread it through the appropriate hole and use the spliced one to replace the paralyzed one. So, after the surgery, the brain has to be retrained to use this tendon to pull the foot up and not push it down. I have read varying recovery times. Lots and lots of rehab. There is recovery that goes with all this. I've seen numbers as much as a year. 

OK, foot drop is not the only issue here. You have heard me go on and on about spasticity. For god sakes, the left lower leg hardly bends. So, if I got this done, the spasticity will remain. I also have balance issues because of this. Looking at my feet when I walk -- that is more complicated than just staring at the foot. That has to do with "attention" a cognitive construct having to do with lots of environmental stimuli. The brain doesn't just la-de-da look at things and enjoy them! The brain has to compartmentalize objects and not get overwhelmed.

This puts the surgery in a different light, doesn't it?

For now, I will talk to my neurologist and keep thinking on things. Either I manage as I have been for years or I make a life change. I'll know to make the right decision, I hope.

Small Town Wonder

This morning was a treat, to say the least. It was my day to go into town, Worcester, NY, an absolutely charming town. Even though I am not involved in town anything, board, library etc. I have never felt more at home anywhere. Worcester is doing quite well in every way that a small town could. It has one local market, two real estate agents, The Worcester White House Inn with dining and lodging, a library (which also shows movies), a hardware store, a seamstress -- all on the main drag. It is precious, really. This morning I had to go to the market and then the seamstress to pick up my jeans that she had altered. I did not think to take my camera but will take some pictures tomorrow when I go in to see a friend. 

I forgot to mention that there are also two handicapped parking spots on Main Street. Thank goodness for that. Without them I would have difficulty getting around as easily as I do. The market has parking in back of the building and a ramp. Not in the best shape but I can manage. So, this is where I began my excursion. I exited my car to find the butcher and owner of the market on the back stoop taking a break. I was greeted as we exchanged how lovely Autumn in Worcester is! It is nice to be un-pressured as I walked through the store with a little cart and my back pack which helps with carrying bags back to the car. Free arms is what it is about!

More chatter inside, fun as I didn't realize how the butcher was very aware of what  I loved -- sundried tomato chicken sausages. I piled my little cart with things I needed to stock up on. I also got my sausages. The owner Bill, offered to help me with the bags but fortunately he had to carry only one. 

Well that just affirmed my reason for loving it here. My next stop was Elke, the seamstress. She is German and a hoot! Her workshop looks like a mad tailor's shop but organized chaos at best. I had called a few days ago letting her know that I had something to pick up and have learned as she tells me "I am not good at calling people!" I sat in a chair just to catchup as she showed me pictures of when she was younger and not "fat" as she puts it. I don't think fat but she is definitely built like a German! "I love to eat" she says unabashedly. Of course she was completely stunning in her younger years but she still is. I paid her and got prepared to leave for my little walk back to the car. She always shows so much concern for my welfare and always says I have so much "spirit."

I had to sit down once again as Elke started telling me one of her stories. This time she talked about moving up here from Long Island and just loving the property that she and her husband own. She walks about three miles a day with her dog and calls the great outdoors "her church." We then talked about health, medicine and life. She is not a fan of medicine even though her cholesterol is on the higher side. Then the phone rang as I heard a frustrated wife dealing with her frustrating "Italian" husband. I rested my legs a little longer because I had to walk back to my car.

What a  delightful morning. Most people wouldn't call this doing much but to me it meant the world.

Nobody is perfect

Today I sat down with so many thoughts on my mind. I am troubled by the political situation today and how the 47% are all lumped together regardless of why they are where they are. Of course I have things to say but have resigned myself to the fact that certain things in my life will probably never change. Why? why? why? did things change the way they did is of course a puzzle for so many of us with chronic conditions. 

When I feel threatened or annoyed at someone insensitive (thank god there are not so many of them), I tend to go into my own mind about the times when things were "different". But the amount of work we have to do just to get on and feel positive in our own minds and environments is a real challenge. So, you have the challenge itself, the stages and phases, dealing with this debacle with new stages, being a nice person, working hard at whatever it is you do, fighting social stigma, dealing with healthcare issues, and just LIVE. Then you hear certain politicians who feel the need to separate us from success. I would not say someone like Dr. Steven Hawkings is not a success! Come on. Right now I feel that this political game has become a "survival of the fittest", rich and poor divide that I am having trouble tolerating.

I certainly hope that society doesn't feel the same way. There are so many of us on this planet that of course we can't all agree. One of the candidates wife has MS. Now there is a show stopper as she was during the convention, walking around all glam sham in shoes that I could only dream of wearing! How will she affect the political landscape? She, whether or not she likes it, is one of us. 

Where am I going with all this? I strongly feel that certain people who do not walk in the shoes of those with challenges do not need to pontificate and be so demeaning. I also understand that many many people "play" the system. I cannot elaborate because I tend to look away when I notice this happening with welfare fraud etc. but they should not be lumped in with the rest of us who did not ask for certain challenges not of our own making. 

Last night we were watching "Wallander," a Masterpiece Mystery and commenting on how dark Sweden and the Swedes are -- of course this is just our interpretation. Then I started thinking back to a previous life in graduate school and negotiating the Minneapolis airport. Interestingly, so many people in Minnesota are of Nordic stock. Aside from one of my trips down memory lane that I mentioned above when things were "different" with my physicality, I wonder if I saw more then because I was more mobile? Do I just rely on what my memory has in stock for the numerous occasions when I need to pull information out? Oh, I don't know. Now I've shot out on a tangent.

What I'm trying to say through all this, is that yes some of us might be lumped in to that 47% of people who are not perfect (for lack of another word) yet our lives are richer in ways that some people do not understand. We have had to make our lives -- sometimes all over again just so we can cope.

Toronto!

I am ready to travel to someplace disability friendly and fun. I searched everywhere for a place that fit those criteria and since I really didn't want to travel to Europe, specifically Sweden (well known for it's accessibility standards), I looked around for some place relatively close. Toronto would be about six hours from me. It is Canada and all I need to get in is my passport, gas and of course money.

What initially attracted me to Toronto was an East meets West attitude as well as being a truly diverse city. I listened to a piece on NPR this morning that talked of the influx of South Asian films into the Toronto International Film Festival, a real departure from the European films. The article also focused on Indian film director Mira Nair. She is well known for films like Salaam Bombay, Monsoon Wedding, The Namesake and others. A mix of some Bollywood but with a real story of Indian roots. Wow, how cool is that?

Now, like many other persons with difficulty ambulating and having to pay attention to needs that go along with traveling, my search seems to go beyond just finding a place to go. But I am so fortunate that I don't need a mobility device constantly. I can walk short distances and have trouble walking if it's too hot.

So, what seemed feasible to me is driving and parking the car in whatever lodging we stay in. Then, we can focus on things in the area so that David can walk and I can scooter. I found a site that has scooter rentals in Toronto:

Toronto scooter rerntal

http://www.vitalmobility.ca/Scooter-For-Rent-B.php?productingredients_id=

I never thought about renting a scooter before. And the prices are reasonable. I already have a scooter but it is not tough, meant mainly for indoor use. This makes me think of the streets and sidewalks, how wide are they? Easy to navigate a scooter in a walking city? But given the "inclusive" philosophy of Toronto I am sure getting around would not be a problem. Also, I just need to scooter to a place, park it and then walk in with my assitive device. I wonder what the sidewalks look like.

Toronto sidewalks

Of course these are pictures found in a random google search. But this gives me a good idea what things are probably like. There seems to be enough space for pedestrians as well as pedestrians with mobility devices. So, I can only hope this is really what things are like.  Ok, now for what the city itself looks like -- some fun street scenes and the fashionable downtown area.

http://www.blogto.com/cafes/agora 

This blog had some nice cafe pictures and many of them are copyrighted so I am pasting the link here as the resource. Wow, these places seem really hip and fun to sit and eat, have a glass of wine. Interestingly, so many scenes have remenants of snow on the sidewalks but one can go during the summer months or the autumn when prices are considerably less.

Street Cafe

Agora Mediterranean Cafe

So, all in all it seems doe-able. Of course it is not as easy as just going anywhere and hoping for the best! One has to plan particularly if one has a challenge. Toronto is expensive like any other city but with a bit of planning, things could work out well. But it is important to note as I found out that May through July is a heavy tourist season which is the summer time but if you pack warm clothes, parka and all, the autumn time from October through November is also pleasant and a lot cheeper. For people in my situation it might be easier when it's cooler but if I am not trying to ambulate I enjoy the sun and warmth as much as the next person! If I start planning, I might just make it -- maybe next year!

I know they have these virtual tours and trips for many people with disabilities but I really think the world is coming around and making environmental barriers less obtrusive for many of us who just want to enjoy places like any one else. Getting on public transportation might be hard for some time to come but even that is getting better in some places. Until it is a reality we just have to accomodate our respective situations. I can do that, I'm at least an expert in that area!

Just Another Day!

Today started out strange. Let me explain what I mean. I had a great night's sleep, that was not the problem. I got too tired a little too quickly. Not hard to do when you have something like MS, trust me. For one reason or another, there is a great deal of physical fatigue that goes along with every other kind of fatigue. That is why occupational therapists teach energy conversation strategies. I went to OT school, I know, plus I live it. 

Looking back on what I did and what  I could change if I had my wits about me:  I thought it was going to be cooler than it was. So, I was dressed too warm, huge no.no. Heat for some reason is very destructive for most of us. So, I did some activities that I probably should not have when I was too hot. I swept, yes with a broom the kitchen and a hallway. Then I took my little basket of delicates down stairs to the laundry. More activity when I was too warm. I even used my cricket to go outside for a little while, even that felt like a struggle? Ooof, I have since changed my clothes, opened windows and am under my own orders to sit down -- and here I am.

My "gateway"

Every one blogs about nature, right? I am not blogging about it -- I just took a couple of pictures which I thought might be of interest. This is not the first time I have looked at this spot. I look at it several times a day and actually ride my cricket through it. It enters onto the field behind the house. Nature sort of formed a canopy of apple trees. Surrounding this are a group of day lilies which bloom in the summer and add to the magic of the gateway. In that grouping there are also blackberries and other berries that the birds know better than I do. I noticed two things in my ride this morning. One, the leaves are turning.....after all it is September 14th! and second, I am not an "overly" nature person, but I do have spots that I like. Below is another one: my shade apple tree for dog days of summer.

My "shade" tree

On beastly hot days I come here on my cricket with my kindle and just read. All I hear are sounds of nature. Wow, that sounded poetic! It is just utopia, and honestly getting overheated early can be remedied, I can find ways to cool down and maybe not walk to the mailbox today, cricket instead. It is blissful being able to escape the humidity everywhere else but under this tree. It really is quite amazing that little bit of shade is like air conditioning outside!

If you keep going on a straight path under that tree, there is another vegetable garden in addition to the one behind the tree. And beyond that, is a natural spring which feeds the house.

My phlox

The last picture I saved was of my phlox-- so happy and add such a delight when I pull into the driveway. Nice and white with a little bit of pink -- makes everything else look so nice. I have some other pictures but no need. There are so many lovely pictures out there that people take and have profound thoughts about. I just have my spots that I can view easily and feel great about.  I really wish the ground was a little more even or that I could walk better. But you know what? I am fortunate in so many ways that walking is just over rated! Cricketing is definitely more fun!

Botox for spasticity

I just got home from breakfast with a friend, who is a nurse and works with anesthesia for various patients who require certain procedures. We had a delightful morning just talking about our lives, how happy we are to live in our town, our activities and so on. We ate our delicious omelets and talked and talked over coffee. I was talking so much that I completely forgot I had ordered juice! Barbara is on vacation and had a bridge game to attend so we finally stopped chatting. Ah, it is so important to have friendships that matter and just help set the tone for the day!

Once we had to break away from the cozy spot we were in, I got up slowly so I didn't knock over the chair along with my cane and everything else, I stopped and explained how spasticity in my left leg hinders most everything I do. You find spasticity in many conditions including cerebral palsy, stroke, brain injury, almost any condition that involves the central nervous system in some way. Spasticity in MS can occur in the upper limbs or lower limbs. In my case my left leg. There are a number of involuntary muscle contractions that happen because of disruption of the central nervous system. My brain, disrupted in its signals to certain muscles, cannot tell the muscle to relax when it should instead making it contract. The result is too much tone and tightness. This link explains spasticity in a more medical way.

 I just talk of my experience with spasticity.

 http://www.webmd.com/multiple-sclerosis/multiple-sclerosis-treating-botulinum-toxin  Now, how can I or rather, is there a way that I can reduce this tightness without suffering in a big way from the oral agents that they have now? Now everyone knows how I am not a fan of big medicine. I am also not a fan of temporary relief! So, my friend told me of all the people she had seen with cerebral palsy, including kids who needed anesthesia to undergo this procedure. Botox injections! I must say, she got me thinking.

My mind whirled around as I thought of regaining some of my range of motion in that leg -- which is now being blocked by increased muscle tone and central nervous system imbalance. The nerves in that leg are not firing right and the muscles are not getting the right signals. Forgive me if I sound repetitive, it is only because I'm thinking aloud. The substance in question is acetacholine, which is what Botulinum Toxin blocks so the muscle can relax. This is what the upshot of the conversation was. She made it all sound so routine. She also said that that Botox "takes" for about 3 months in most people.

So, I did some reading on how there are side effects with all this, including weakness in the muscle that is being relaxed as well as surrounding muscles. Anything invasive, I am pretty against. I think I will manage like this until something without side effects comes along. Yes, this would certainly bring me relief but in someway brings with it a whole new learning curve. Am I afraid to get on that curve and am I being silly by not trying? Maybe, but I think a good massage relaxes me too. I know it's not the same thing but it just doesn't sound appealing particularly since I've endured so much already. In my case, less is more.

I have tried oral agents and a host of other things that seem logical. But walking into an office and then having to return every so often is not the answer I seek. In the middle of the winter when I could be doing so many more constructive things, I do not want to sit in a doctor's office. Honestly, life is just too short. There are too many other things I could be doing!

More power to the young people with cerebral palsy and other conditions who go through this.

I will wait patiently, just like I have for 26 years but know what? I have learned so much along the way that I don't think I would have just going for ready answers.