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.