Fulenn's MS page New: before/after pics on page 15

[moonwatcher]

hi again fulenn--

question for you: just read your "I Ran!!" thread in The Lounge--you distinguish there between sensory and physical symptoms. That's interesting to me. My sensory symptoms affect how I move around in the world, so I consider them physical. Anyway, I'm mulling over what you said. Thanks for the food for thought.

moonwatcher

[fulenn]

hi again fulenn--

question for you: just read your "I Ran!!" thread in The Lounge--you distinguish there between sensory and physical symptoms. That's interesting to me. My sensory symptoms affect how I move around in the world, so I consider them physical. Anyway, I'm mulling over what you said. Thanks for the food for thought.

moonwatcher

I'm thinking and typing as I sit here....
I started thinking in terms of sensory and physical when I was first diagnosed. My neurologist said it that way and I just kept doing it. Actually, I think I've done it longer than that as my father had MS and we discussed his symptoms in that manner. Of course, he had the same neurologist as my first one. So I tend to think of sensory as ones that don't affect my body moving but do affect how I perceive the world. My are is numb, but it still works. But I see where you are wondering about it. One of my initial symptoms, that I have been fortunate enough not to have again, was that my feet sensed things that were not there. When I walked, it felt like I was walking on sharp upward thrusting pieces of glass. It was sensory, but bad enough that I couldn't take more than a few steps without experiencing extreme pain. But my feet worked. It did affect my mobility. I kept telling myself that, there is nothing really there, mind over matter, just do it, but never could walk more than several steps. As an example of a physical symptom, my father had problems with his right leg dragging, for lack of a better description. Over time, it had stopped responding to his brain's command to lift the muscles necessary for him to lift his leg and take a step forward. He couldn't stand up and lift his knee at a 90 degree angle. I do remember when he had his first solumedrol treatment, though. I walked into the hospital room and he was like a little boy he was so excited. He immediately showed me how he could now lift that knee straight out. It is unfortunate that he could only do that for several hours. By the next day he no longer could.

So I see the pain in my feet as sensory and the inability for dad to lift his leg as physical. It probably doesn't matter anyway. My neurologist told me years ago that people with sensory symptoms tend to have a better outcome overall and it gave me a lot of hope. That may be why I still distinguish between the two. She told me later that my onset was one of the worst she had ever seen and she thought for a while that I was one of the small percentage who would just progress rapidly and die within a couple of years. So I needed a lot of positive support to hang on to.

Now that I have typed this, I am surprised that I ever went off of the Swank diet, much less ever had a hard time getting going on this one. I just never put it all in one place and I obviously needed to. Go figure.

Fulenn

[moonwatcher]

dear fulenn,

I read this entry with deep interest--thank you so much for sharing these details about your father and also some of your initial symptoms. Also the way the neurologist explained things to you. We all cope however we can and sometimes specific categorization works, at least for a time. And sometimes denial does, too. For a time.

What you say, of course, makes sense. I just had a slightly different explanation, and with the existing problems from the CP, my experience lends itself to a more global interpretation. Interesting how we hold fast to those first things were were told, yes? My neurologist told me that whenever someone with MS goes into an environment with new and/or high stimulation, their physical funtcion is more likely to go down, because of the overload for the damaged nervous system in sorting out all the new input. So maybe the cause is sensory, but the effect, then, can be physical. What you describe about your arm makes sense in terms of not thinking of it as physical since it doesn't seem to affect your movement of it. In my case, I already have problems wth balance and coordination on the right side. The MS manifesting and affecting the left side (my compensatory side) made my apprehension of where I am in space at any given moment even more unpredictable. That's why the dog is so much help. Though it's subtle, he's always "there" and I can entrain my movements to his willingness to follow mine, and his ability to know when I'm tired, need to slow down, reorient my footing on the ice, etc., even before I do. Disability folks think of this as mobility assistance. It's a sensory problem, I guess, but its effects are physical. Even though we may be splitting hairs here, it's great to discuss it. Learning how you've seen it and called it helps clarify for me how I see it as well. That dissipates denial that conveniently creeps in, and, I think, is a natural way of coping with something that has overwhelming and unknown implications. It's just human nature to do it, but hopefully we stay aware and not let it make the important decisions.

It is truly wonderful that you made it past that horrible symptom of feeling like walking on glass, and that you held on to hope, and found your way back to an even more effective way of eating than the Swank Diet. I am really glad to know you, and that you have listened to the part of you that knows how to heal as best you can. I have nothing but respect for your journey. That is intensified by knowing you had to watch your father before you. I think you may be more brave than you know. And I love your tag question--"what if love really IS the answer?" You show that it is by even asking it. It's my favorite tag of anyone's on here.

moonwatcher

[fulenn]

moonwatcher, thanks for getting me to think about a new way to see MS. We are all different and I don't know why I should ever think that the way MS affects us should be the same.

Today I was up at the school beginning to get my classroom ready for fall. I ran into another teacher who has been a friend of mine for about 11 years. She asked me what I was doing to reduce my MS symptoms and I told her about eating a plant based diet without oil, meat, dairy, and minimizing processed foods. She replied by telling me about Forks Over Knives!!! She was telling me how cardiac symptoms can reverse! She is getting it down quickly. How cool is that? She and her husband watched it this summer and are beginning to make changes. She is having some difficulty adjusting to cooking this way, so I invited her to come over to make oil-free hummus (without tahini as she wants to lose weight) and to see what else we could come up with. I can't believe how lucky I am to be able to help someone else and I am not even at my own goal. Whoo Hoo!!!! So I am already looking forward to potlucks for this coming year because this time there will be someone who will eat what I bring, unlike last year.

My oldest daughter and her oldest daughter are old friends from 1st grade, so I will let my daughter know that they can come over here after school and try cooking some things out of my McDougall cookbooks. Hope they take me up on that.

Fulenn

[moonwatcher]

You're welcome, fulenn. And thanks for this nice response. I think there are as many different experiences of MS as there are people who have it, since the nervous system is so complex. Yet we all have common ground, too, also because of that.

This is wonderful to hear about your colleague and friend having seen Forks Over Knives and wanting to learn to eat and cook as you do! And that your daughters are old friends, too. All just lovely. What a nice supportive way to begin the school year, knowing someone you work with is in your corner, and wants to join you. Hooray!

moonwatcher

[absgirl]

your post have inspired me to try this.

i to have MS...ive gained lots of weight and i lack energy so maybe this can help me out!

thanks for ur post!

[fulenn]

your post have inspired me to try this.

i to have MS...ive gained lots of weight and i lack energy so maybe this can help me out!

thanks for ur post!

absgirl, welcome aboard! The energy that I have gained is all by itself worth eating this way.

I emailed Dr. McDougall asking if my MS might completely reverse; he reminded me that "lost functions cannot be expected to return." So I am wondering if the running really was lost, or if it just felt so bad that I didn't do it. I had one really bad experience, then I just didn't do it again. I don't know, I'm still thinking about it. I know that early on the myelin often grows back until exacerbations have caused enough damage and scarring that it no longer can; then it is permanent. Maybe it just never got to the permanent stage.

I got on my recumbent bike and rode 6.48 miles this evening.

Fulenn

[absgirl]

I got on my recumbent bike and rode 6.48 miles this evening.

well maybe soon i can go over and knock the dust off mine! lol

[moonwatcher]

fulenn,

that's great about the bike. Perhaps the best way to think about these things is in terms of improvement. It may be that there still is are still break points, but over time they soften in nature, it takes longer for to get to them, and you keep finding yourself doing more and feeling better. And when you hit a wall, it doesn't happen as hard, and you'll bounce back sooner than before and more fully. That's what I see anyway. A more slow, global, comprehensive improvement over time, instead of more and more sharp degeneration. So to me it doesn't matter whether or not it completely reverses. I don't focus on that. It's enough of a miracle it's now able to move in the opposite healing direction. But again, I've never been problem free, since some of my issues are congenital. Don't know if that's helpful or not. You are doing so great. What does it matter whether the reversal is ever complete or not? It's how you feel each day and what you are able to do that you enjoy that counts. And that it keeps going in that positive direction. The one day at a time thing.

moonwatcher

ps: absgirl: enjoy knocking the dust off your bike! And welcome to plant based healing.

[fulenn]

What does it matter whether the reversal is ever complete or not? It's how you feel each day and what you are able to do that you enjoy that counts. And that it keeps going in that positive direction. The one day at a time thing.

That friend that I was talking about in my post earlier talked with me this spring when things were getting bad for me. I was scared because the symptoms were getting so bad. She reminded me to live in the now, today, and to be thankful for what is going well in my life, not to be worried about whether or not I was going to crash with the MS. It was an important thing for me to hear at that time and I am thinking of that as I look at what you have written. Thanks!

absgirl, dust, dust, dust. Can't wait to hear how you do eating like this.

Fulenn

[fulenn]

moonwatcher, I guess I was feeling a little bit bad about posting that I can run now. I haven't run in about 3 years, but it could be that I was scared from the last time and didn't really give it a chance again. I don't want to mislead anyone else with MS about what this way of eating can do for them.

Fulenn

[moonwatcher]

fulenn,

It's wonderful that you ran, and don't waste another minute feeling bad about it. You were totally fine to celebrate that victory. Try to remember that Dr. McDougall does not know you, or the particulars of your history, and he was giving you general cautionary advice about not expecting lost function to return. I'm sure you may remember from Dr. Swank's book how he talked about the further away from diagnosis, the slower and less complete the improvements will be. But even so, even if they were right there with degrees in internal medicine and neurology looking right at you and your history, there is so much science does not yet know about the nervous system and how it regenerates itself--or doesn't. It was thought that it couldn't, and now we find that it can, under some conditions. So at the same time it's best not to focus on an all or nothing outcome, as in, will it ever be "all gone"? it's also important not to shut down belief and faith in your improvements as you experience them. A friend once told me the body doesn't lie . It's so true. Listen to your body--it's telling you it can do something (at least some of the time) it couldn't or didn't want to risk doing before, whatever the mysterious particulars are about the extent of your nerve damage may be. That's wonderful, plain and simple, and healing, no matter what any doctors, near or far, plant based or otherwise, have to say. And I say that with respect for the doctors, too, of course. But we don't know everything, right? So believe in your improvements, and don't weight your spirit and healing down with unnecessary worry. Stay in the present with your body. If only we could. It never steers us wrong. Even when it's tripped up by mixed messages as Doug Lisle talks about, I believe all the while it's also trying to tell us about the problem with mixed messages and the food we are eating.)

all the best,

moonwatcher

[never give up]

fulenn

I got on my recumbent bike and rode 6.48 miles this evening.

As corny and over over used as it is YOU GO GIRL.

Happy to see you've had some really good days!

Great advice moonwatcher for all of us!!!

You all continue to inspire us!

[moonwatcher]

hey never give up,

Great to see you back on! Thanks for joining me in cheering fulenn on. Hope you are doing well.

moonwatcher

[fulenn]

Thank you, both of you. I feel better now.

nevergiveup, nice to see you! How are you doing?

moonwatcher, you must have been one heck of a teacher.

I've got errands, but I'll be back on tonight.

Fulenn