My latest blog post about my brain, by request from Katie41

[lucky125]

Feeling better:

It is very obvious to me that when I exercise my legs, they are very weak for a long time afterwards. Makes perfect MS sense, right? Well, last week I was exercising my brain muscle like crazy! I was sitting at my computer for hours at a time immersed in all things CCSVI. Exhausting. It could conceivably cause the brain to be tired. Wish I had made that connection sooner. It would have saved me a whole lot of angst!

I made a conscious decision to give my brain a rest at the beginning of this week. While I didn't sit around watching cartoons and eating bon bons, I tried to only read, write and respond to emails in small doses. Ta da! Less cog fog! Can I hear a collective, "DUH?"

When a baby is developing she can only concentrate on one new skill at a time. When she is learning to use her voice, her physical development takes a back seat. When she is learning to crawl, she may not be as vocal.

With my extra time away from this addictive box, I spent time working on the muscles. I got on my stationary bike and pushed hard. Pathetically, for me that means a whole FIVE minutes at a time! But something interesting happened. Instead of needing an hour to recover, and having weaker legs, they bounced back stronger and more solid after about a ten minute rest. Holy cr@p! Could this be a real change?

I did it again the next day, and sure enough, the same thing. I spent the rest of the day walking more balanced and strong. It does not last all day, but it definitely gets me off to a great start.

I am about to get on the bike right now. I have a busy day ahead. I need all of the strength I can get!

I have had major motivation problems in the past when it comes to exercise. I would get into a routine, then I would get a cold, or have an exacerbation, and all of my little gains would go out the window. What was the point of it all?

Now I feel like the work that I am doing may actually last. What a positive motivator! And if things do significantly backslide, I will suspect that veins are closing, rather than that the brain is inflaming.

If you haven't noticed by now, I don't like uncertainty. In the absence of scientific information, I will make up any reasonable explanation I can to justify what is going on. See above as a perfect example. My strategy has served me well my whole life. I'm certainly not going to abandon it now!

So snicker if you will at my ability to explain any and all events in my world. It has kept me buoyant and positive through many, many challenging years of life. If your strategies aren't working for you, I encourage you to try mine!

Naive optimism is a great gift.

UPDATE: 8 whole minutes on the bike this morning. Now that I've copped to my lame five minutes to you all, I think I'm trying to up my game to impress you! Whatever it takes to motivate, right?

[Katie41]

Thanks

[ndwannabe]

Oh my word, lucky! I am so happy to hear about your improvements. This is huge.

Before MS (here is the idea, we'll invent new eras - BMS and`AL), so before MS I was a die hard exerciser I know the building upon what has been achieved last week. I know pushing myself a little harder every next day / week to see great body response.

But now I also know swimming for about 15 minutes then "paying" for it for the next two weeks. Trying to work out my ever-not-listening legs and setting myself back to barely shuffling from room to room

So to me the ability to INCREASE (yes, very gradually) the amount you work your body is huge.

Thank you for posting and helping us keep our hopes up.

[Stayfit]

Yes you are applying brain plasticity, the brain's natural ability to rebuild when it is damaged. When you ask for a function signals are sent maybe weak signals but over time the muscle get the message. When you do not ask your muscles they forget there job. Do not strain or sweat repetition develops stamina and strength. Over 35 years MS 15 years physical training.

[Vhoenecke]

[kc]

I can so relate to building up and then BAM! It's gone. All that hard work for nothing, it can (and did with me)make u just not wanna exercise. I at this point am doing a stationary bike for 1 mile. I started it last summer when I couldn't even go one cycle around but then did, to doing 3 minutes, to doing 5 minutes. I think the longest I have gone is 28 or so minutes. Now I go by distance and try to do at least a 1/2 mile everyday.

Sometimes I am just too fatigued but I get back on it when I can. The good thing with this stationary bike is that it is a wind bike with arms. (So if yr legs get tired, u can use yr arms)

I notice I yawn a lot when I am riding it.

I pray for a time when I can just do it. Fatigue has been my worst symptom with ms.

I am going on a rant, sorry to do it on your post.

kc

P>S Lucky r u walking better?

[mshusband]

Yawning doesn't mean you're tired. Yawning means you're lacking oxygen.

Oxygen depravation to important parts of your body (as carried by blood) as a result of CCSVI are what causes MS ...

I'd say there's a strong connection there.

[MS_mama]

nice, Lucky--I love hearing updates from liberation pioneers. I can relate to the feeling of being lame. My current bike record is 10 minutes, but that's rare. I really have a hard time finding the balance between "use it or lose it" and the MS reality of "overuse it and pay." I am so excited for your gains, and the feeling of hope that if something does come up again, you can just have your veins re-opened.

[lucky125]

I can so relate to building up and then BAM! It's gone. All that hard work for nothing, it can (and did with me)make u just not wanna exercise. I at this point am doing a stationary bike for 1 mile. I started it last summer when I couldn't even go one cycle around but then did, to doing 3 minutes, to doing 5 minutes. I think the longest I have gone is 28 or so minutes. Now I go by distance and try to do at least a 1/2 mile everyday.

Sometimes I am just too fatigued but I get back on it when I can. The good thing with this stationary bike is that it is a wind bike with arms. (So if yr legs get tired, u can use yr arms)

I notice I yawn a lot when I am riding it.

I pray for a time when I can just do it. Fatigue has been my worst symptom with ms.

I am going on a rant, sorry to do it on your post.

kc

P>S Lucky r u walking better?

kc,

It is so great how you have built up so much. You must have a lot of determination!
As far as my walking, it depends on the day, and the time of day. It really is a roller coaster. Although, I feel like I have more better days than bad ones lately. I still have a looooooooooong way to go. 20 years of MS can't be fixed in 2 months of open veins.