Tuesday, October 30, 2012

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?"

Friday, October 26, 2012

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.

Friday, October 19, 2012

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.

Monday, October 15, 2012

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.

Wednesday, October 10, 2012

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:


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.

Wednesday, October 3, 2012

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!

Monday, October 1, 2012

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.