Alan has feeling in the tips of his toes!!!
 

Alan went to the neurologist today. She did the test where she touches you on the various parts of your body (with him, it's his feet that have been completely numb for over 10 years).

Well, it seems THERE IS A BIT OF A DIFFERENCE TODAY.

He came home saying "guess what?, when the doctor did her test thing on the tips of my toes, I felt it". I said 'YOU DID WHAT??" And he said "but I still have the pain between my toes, so I don't know what this means".

I said 'well, think about it, you haven't felt anything on any of your toes for 10 years, right??" (You should see when the podiatrist cuts his toe nails, the guy used to give him a look as if to say "you dont' feel this"???.

Well, today, (for whatever reason), when the doctor touched some tips of his toes, he felt it.

Now I know someone has an opinion on this.

Maybe his sensations are coming back?? He still has pain, he shakes his feet because they are tingling. Maybe something is being affected?? Maybe the IVIG is finally doing something (besides helping him with his balance).??

He doesn't take the B-12. I do.

So anybody have a clue on what is going on here??

Thanks, Melody
P.S. I think it's all good, right??

Mel
 

All I can say is good,and i'm happy. We had a Tornado sit down here
today,wow I thought I was going to have a miracle and be able to
run..I just paid the roof man from hail storm.. I tried and fell again.

Bless wishes to Alan what ever it is I hope it continues.. Hugs to all Sue

WOW! Great news.
 

Just tell Alan the Antibodies are winning the war! What else can one say...but :Head-Spin: and such other acrobatics that I no longer can do....
Just promise, do not look for them to 'happen' they might just sneak up on you and surprise you...

I'd wished good news by 2's for each of you...Mel you and especially Alan are now one up on the rest of us! You go! Guys! :hug:'s I'd dance a jig or something, but I'd probably fall over..so just know I'm 'jigging' mentally for your. - j

Do you really think it's the antibodies?? He's been doing the IVIG since March of 07. At first two times a month, then after a few months, it's been once a month. Now wouldn't this be something?? The man has had completely numb feet for 10 years and now he can feel SOMETHING in the tips of his toes.

But I heard that when nerves heal THEY HURT LIKE THE DICKENS. Oh well, it's nothing that he hasn't already been feeling for all these years right??

Let's just keep fingers and toes crossed. As long as he can make his funny videos, all is right with the world. He laughs so he feels better.

Mel

((((((Melody)))))),

Nerves DO regenerate. I met a man once who had a leg amputated 20 years prior. All of a sudden, the feeling came back in his leg. For him -- not a good thing, because it meant pain.

But, for your precious hubby that could mean wonderful things http://img.photobucket.com/albums/v9...SIVE/bliss.gif!!

http://img.photobucket.com/albums/v9...23_29_107v.gif

BIG HUGS.

Barb :hug:

Yes! I Do!
 

Sometimes the nerves are well 'quiet' about what they do. Other times they are kind of noisy. If they become noisy? Just celebrate that,,, and keep Alan doing whatever he has happend to be doing RIGHT! Do not knock it...Just accept it and go out and have an extra doughnut or something! This really is cause for a party...even here!
I've been wishing very HARD for each and all to have some good things happen this year...I've had a couple of small things...I'll go into later if tests all come out for the good. Also, several others are saying good things such as yours and Alans. Maybe, maybe this is OUR YEAR OF GOOD HOPE!?
To hear such good news such as yours does give ME hope to keep on trying to do all I can and maybe, just maybe ... I might get some relief and hope as well. The more good news I hear, the more hope I have, and maybe others new to all this 'stuffs'!
Mel, your own optimism and care has very likely had a real role in this improvement. I just wish I could treat YOU to the 'perfectest' spa treatment as reward...Honestly, I could use one too? You know what I mean. I'd like to pretend I'm still a hedonist at heart? or something.... HOOORRRAYY! -j

Thats just fantastic news Melody, what a great way to start the new year.:)

Yes, that really is good news--
 

--in that feeling, even if uncomfortable, is generally better than numbness.

You're right, though, Mel--very often, healing small fibers, as they advance through tissue to meet up with their end targets, send out sensations that hurt like crap until they move into position and the brain learns to re-interpret the patterns. Sometimes it's hard to tell if the neuropathy is progressing or regressing except in longer-term retrospect.

Wow,

I cannot begin to tell you people how kind, how compassionate and how caring you have been to me and Alan. I know I'm the one who comes on these boards. He has problems expressing himself (you wouldn't know it by his singing, now would you), But he really does.

But I'll tell him exactly what you said.

Let's keep hoping.

Melody

Great news!
 

mel,
I'm so glad you and alan are winning the battle. I hope the rest of the year is just as good!

Billye:)

I would give credit to the IVIG and Alans persistence. This is good news.

On nerves regenerating....I think some do and some dont...I think small fibers are the most likely to do so.

If you are squeamish----stop here!!!:eek:

I cut off the tip of my finger to the bone....every thing got cut, but the tendon on my index finger above the top joint. Right index finger...I was looking at bone and the tip of my finger hanging off that bone...that is called de-gloving. It is a very 'revealing' injury.

If I tell you how I did this promise not to laugh???:o Do not attempt this.....professional stunt dummy trick.....

I did it kite skiing on a frozen lake:cool:....I know now, there are somethings we truly get too old to do with a reasonable margin of safety.

I was fine until I saw the huge open spot of water in the ice....I downed my kite (which is the size of a parachute). Because I was a bit scared to be that close to the edge of ice...l took off my ski's backed up and gathered the kite by the strings...DUMB MOVE. I knew it was a dumb move...but it was a pricey kite....I wanted to keep it.

On gust of wind and bye bye finger....and bye bye kite.

To the ER via EMS....they just stictched it back together and said the nerves will grow back...at least the tendon is fine....they knew me by then...I had a few other adventures previously. This was my last one...by then I figured if I came in with another injury of adventurous etiology they would send me to the psych ward.

Anyway....the nerves did grow back, totally intact. You can not even see where the injury was, let alone feel it....
Oh and I got my kite back....it found a way to the marina....and we fished it out....now I fly it on dry land...oh and I bought one with a BRAKE.

I have settled down now to a more sedentary life....by necessity. I can't take that kind of excitement anymore.

My spinal nerve roots from my MVA...that is a whole other story....I wish it was the story of my finger...but it isn't.

Congratualtions Alan...I am glad your feet have "feelings...nothing more than feelings....I forget the rest of the lyrics to the song.....I will hummmm for you.:hug:

Cyclelops:

I have two questions for you.

Is this what you were doing:

http://www.youtube.com/watch?v=kZUQd...eature=related

and if so, YOU ARE NUTS!!!! lol

And how did you cut off the finger?? I'm trying to picture this.

mel

that's great Alan is getting feeling.
 

I just hope it doesn't turn into too much feeling.

These past two days I've had way too much feeling myself! OUCH!
Like others here the weather changes are KILLING ME.

I know what you mean by too much feeling because that's what the crazy weather does to me.

He has the pain between the toes. That hasn't changed in years.

But the whole foot has been numb during every single test he ever took by anybody. For over 10 years.

And yesterday, when she touched the tip of some of his toes, HE FELT SOMETHING.

Now whether or not the antibodies are kicking in, well, I have no idea. But something is afoot here!!! NO PUN INTENDED!!!!

We shall see.

mel

Yes Mel...that was what I was doing....could have been me!!! I was pretty good at it....only problem was that the darn ice ended....the lake I was on is very deep and usually we know where the holes are....the ice fisher guys were well past where I was....they must have gotten there some other way.....or that hole was new. The hole was a lot worse than the alternative....with those kites...you never ever, ever, get near the strings....they take off at 80 mph. slice like thru butter. I flew many many times and had no problem...I got freaked by the prospect of going in the drink...and yes...I did have ice fisher picks to get myself out....but luckily I avoided the dunk. Now I stay off frozen lakes....global warming has made ice very unreliable....

Lesson learned. I can't do the kite anymore, unless the wind is very very light...it pulls too hard on my arms....my kite fastens to the fore arms...it would pull your hands off. I even have one with a harness.

I bought better ones after my accident...one was a sail, which is much better, the other one is like the one you see on the video, but has a 'brake', which turns the baffels on the airfoil down so they don't 'catch air'....so you slow and stop. However in Spring 2004, my health really took a dive.

I was not kidding when I said I was athletic. I injured my finger in Jan or Feb of 2004!!! Prior to that I could complete a hilly sprint triathlon in an hour and 50 minutes....this was a 500m swim, 18 mile hilly bike and 3.2 mile hilly run.

I can not walk 3.2 miles in an hour anymore....gosh, I am not sure I can walk 3.2 miles...I think I can.....(I think I can, I think I can......)

This is how fast this disease came on ...it is thru my entire body....

I was sick and in pain back then but man, when you are doing that with a kite and skis....you forget you hurt. I was so hyped on adrenaline...it didn't even hurt when my finger got sliced.:eek: Yeehaw. God how I wish I could feel that again.

BTW I owned 3 kites like on the video...mine is a rainbow color...beautiful...I can still fly it on not real windy days....and I can make it do sommersaults and dives...I have a long line on it to do tricks.

My sons have the other 2 of my huge airfoils...one kid has the sail which can be used with a boogy board...skate board kind of thing as well as skis or snowboard. Snowboards are better than skis...you gotta know what you are doing on skis with those things... Ironically I do not downhill ski.

I still have a few other kites....I like to put lights on them and fly them at night....stops traffic...people think it is a UFO....that is a riot.

I can put a 150 foot line on those suckers and they will carry up to 4 lights...they are that strong. Heck, they will lift the likes of me on a windy day...which is why one does not fly those on a windy day unless one is on a moving object or likes to be dragged...

I would die flying like that now.

(I had a few friends trying to talk me into skydiving....my brother in law did it....I passed---I do not have good luck. Now I can not take an exciting movie...this stinks.)

Just so folks know...it doesnt matter who you are, what kind of shape you are in, were in, doesn't matter what you did, PN can hit you....once it does, there is no going back. This is not a Lance Armstrong story....I tried, but there is no going back.

BTW my skate-skis went to Colorado with my daughter....the speed skates that also clicked onto that boot system are under my bed....she has the sense not to use them....and my dopey son is trying to untangle the sail...(it was never tangled....that is how the knots are supposed to be tied-but it has kept him out of trouble for a few weeks...)

I got my daughters good Gary Fischer mountain bike in trade...and it has shock absorbers....she got some fancy $10K bike from her team.

now if I can just feel my hands long enough to make it worth getting into all that gear to ride....when it gets warm of course.

Did you know ice is 7 times harder than concrete? It is. I have learned that the hard way too.

I wanted to die at the age of 87 on my mountain bike in the Himalayas.....that aint gonna happen, and I hear there is a travel advisory for that area right now..

How the heck can ice be harder than concrete?
It's frozen water!!!!

mel

I have problems with the concept of hard...either something is hard or soft...

However, they do grade hardness...think of gemstones.

Yes, ice is 7 times harder than concrete.

Ok....I tried to upload the pic....where is it?

There ya go Mel....kinda far away, but I think if I get it too close...I will pixilate it.

There ya go Mel?????


Where do I go.

THERE'S NO PIC!!!!!

LOL

mel

Is a pic not showing up on the avatar...it is on my computer??? It is not a close up tho...sorry. This is a long shot. Some reporter took it.

i have seen people practicing on the beach with those in the summer and being lifted off the ground....looks like murder on the shoulders.

This pic was from 2004. I used to lift weights....as well as do sprint triathlons....the kite was like lifting weights....can you believe I have myopathy now...no rhyme or reason. I was no wimp...but PN (SFN) has trashed me totally, right down to the heart rate.

This kite actually will fly in very little wind. That is the only time I fly it now...very low wind.

You know, it is actually tough on the neck to look up at it....this kite is on a long line here...about 150 feet....the closer you come down the more it picks up speed. Way up high you can usually hold steady...as it comes down, if you stand it vertical....man can you catch the wind!!!! I could fly to NYC. You have to pull with all your strength and balance too, or you fall on your duff....your whole body goes into flying the thing if you take it out on a windy day...these kites can not be flown in winds over say 20mph...I used to have problems with onlookers...keeping them from under the kite...like I said, those lines slice thru anything....

Did you know the British used to have 'man lifters' during WWI....box kites that lifted people up to see...

I have smaller stunt kites that are similar and much more practical for me.

"Practical' sounds like orthopedic shoes to me....ouch....hurts my ego more than this disease hurts the rest of me. Alas, I am a baby boomer who needs to grow up. I had my fun times and I would not give up a day of it for anything.

They have harnesses for that kind hard kind of flying...there are bars and harnesses, so you don't hurt your shoulders. Those kites are so big, that if you catch too much wind, you have to let go unless of course, you are tied to them with a harness...then u better know how to fly.

I didn't know you were referring to your avatar's picture.

Yeah, I see you.

I have a question about kite skiing. Maybe it's a stupid question, maybe not.

How on earth do you stay on the ground?? I mean, if you are on skiis, on ice and using this big kite, can't the kite just lift you up up up and away, is what I mean???

Mel

First of all, I did not mean to highjack this thread....wow, did we get off topic...I was just trying to make a point that my finger nerves grew back. LOL:D

Anyway, you stay on the ground by controlling the kite. If you do not control the kite, you do not stay INTACT.

You need some one to teach you to fly these....it is not a do it yourself project.

I would not have lost the tip of my finger had I not had open water in front of me....that threw me for a loop. I know how to fly a kite and do stunts with them.

Those monster kites are flown several ways. You do not hold handles in your hand, except ones with brakes...too much pressure. You have these straps that distribute pressure or you use a harness or bar. The Thunderfoil is unique in that is it a dual line, and has no brake. You can brake any kite, however....keep reading.

When flying you keep your upper arms always at your side...you do not extend your arms up....I know nothing about kite acrobatics, so I can't speak to how they fly.

In the pic you see the arms are at my side....control is via the biceps and other muscles of the upper body...you keep your joints stable. You do put your whole body into it...it is a fitness endeavor. Turns are made by pulling right or left. When the kite is on the vertical....(up and down) it pulls pretty hard, and you control it by aiming it...by catching wind in the baffles...you can pull right or left and lose your wind....or break your kite.

When the kite is horizontal as in my pic...you also pull right or left to manuver the kite and it also pulls you, altho not as effectively as the vertical position.

You can see in the pic I do not have skis on, and not airborne....however I am leaning back quite hard to control the kite....now and then you lose your thermal and end up on your duff. Kinda like tug of war. LOL

I was letting the kite do sommersaults, which is just a trick you learn...it is a fun thing to watch and also to do once you get the hang of it.

That kite is a 'Thunderfoil'. I also own a Beamer quadline, which has 4 lines, two of which are brakes. It is quite big too. I think both are a least 6 footers....You know it is nice outside today....maybe I should fly one today...see if I can still do it, LOL.

I have a Norweigan one, a sail, which is for skijouring.....being pulled on skis by a sail...that is the one my son thought was tied wrong....now I have to somehow figure out what he did to it...poor thing.

I have a few others, 'Symphony kites', Delta kites (one with a huge wingspan)...that a stinker took off on me once. I also have a few that open to big circles if flown as the tail of the Delta.

I do not recommend folks take them out without having some one teach them....my son, actually can fly and taught me to fly....he just didn't know about the sail....he thought I messed it up and tangled it. He was so cute, he called and said, "Mom I have been trying for hours to untie the mess you made...." I had to tell him, "Honey...it was supposed to be tied like that"...His reponse, "Oh oh."

Anyway, it is a fun hobby...and can be done at all levels.

Forget the skiing part.

"You stay on the ground by controlling the kite."


So I gather that if you are a newbie, and this is your first time out, and you get this monster kite, and you just hold it, then there is a good chance that on a windy day, you'll wind up over Japan????

oh my god!!!

lol Melody

Wow
 

this is awesome Melody, I hope it only gets better! WOO HOO - don't know what could be happening and he's not taking the B-12? Strange how G** works in mysterious ways ;) GOOD LUCK

If only it were that easy to travel....I would be a frequent flyer.

You likely won't make it to Japan....your kite might, but more likely it will nest in a tree, whether you are attached or not. I am far to cowardly to go airborne hoping a kite or chute will open.

You should see how fast this thing crumbles into a wad of gortex, that looks like used kleenex, and flops to the ground when it wind goes out of its sails.

That was one of my points to my friends who wanted to skydive. I showed them how fast I could crash my kite with the jerk of my elbow. I do not think any of them went on to jump.

I do not like heights. Heights are for birds, for kites and not people.

I see the way a glass shatters when I drop it....my feet are staying on the ground, except for when I board a plane....at least I have the illusion of a floor...and IT has engines.

I have been dragged by my boys to the heights of Zion National Park's Angel Point.:eek:

And the depths of its canyons, in a leaky dry suit, via cold Virgin River in the spring flowing at 200 cu feet per second, up to my neck.:eek:

I have biked down hills at 50 mph on skinny tires.:D

Been on Bear Butte in a storm.:eek:

I have hiked in the Rockies, and swam with dolphins.:D

I was going to learn to rock climb, but the hands started going...

And of course I had kiteskied, with predictable results.:o

I will not eat raw fish or worms...nor jump out of a plane.

I am out of the junior adventure club.

NOW it seems I can not take a scary movie....:(
I am sooo boring and bored, alas it was good while it lasted. My big adventure today was a walk, slip on the ice and trip on the sidewalk.

I may get a moment of inspiration in the future as in my eyes, I have little to lose...but right now, the thought of a cast on one of my limbs is more than I can take.

I'll say one thing for ya!!!

YOU HAVE CERTAINLY LIVED!!!!

I've done nothing compared to you.

I have to go and buy my kite now. lol

See you on the ice!!!!

Oh, and I did just make some zucchini battered chips. And some homemade brownies. The visiting nurse is here for Alan's IVIG.

I asked her "have you ever seen people get better, either in their balance or with their pain level, while they are having ivig treatment?"

Her response: "oh, yes, many of my MS patients can now walk and they are out of the wheel chair and they have no pain, and it's all from the ivig".

So IVIG does work for people.

Thankd god. At least it gives us hope.

Melody

Well, Mel...

I can't cook like you do, nor make videos like you do....nor learn how to acquire gadgets....you have a knack there, as well as learning a lot of technical stuff for Alan's care for not being a medical professional...

When folks told me to 'Go fly a kite' I did. It was just kinda big....

Uh, you may want to PM me for a manageable kite....and of course, watch out for power lines....Those kites I fly are called Power kites or Traction kites...you may want to start with a small 2 line airfoil no bigger than 3 feet in length. I seriously mean that.

Airfoils are nice...no sticks to break and nothing to put together...they fit in your pocket...you can carry them along and just, 'Go fly a kite."

I did most of those things in the last 10 years....and my grown kids were the impetus behind all of it..I have the best kids in the world....hubby is good to me too. I feel so blessed and have so much gratitude for this family, not that we don't cause each other grief now and then..we do.

I would not have done any of that, had my kids not gotten me into those situations...except for the biking, which likely started it all for them.

There are lots of things I did not do in life, like advance in my career the way I wanted, and make better job and financial choices....and I have struggled, you know that by what I have shared with you....There are many things undone and things I still hope to do and many things I would not do or do differently. I bet that is the same for all of us.

Now I will do more ground based things, slower paced things....I think. Things where I am less likely to lose a piece of me or break a limb. I forgot how bad a cast is until Ides posted on Julie's thread about falling....I never connected my cast, my horrible pain...that cast they had to cut off after only 3 days, you know, before I knew I had PN? I do not know why I did not make that connection...so Ides..thanks.

Anyway, I just had kids who thought the sky was the limit and they dragged mom along for the fun of it.

Only thing that was MY idea was the going downhill fast on the bike thing...now it is my turn to worry about my kid doing the same thing. I have a lot of good people in my life to give credit to, for helping me along my journey.

Life is to be lived in what ever is fulfiling to us at whatever stage of life we are in. I do many more sedate things too, truth be known, I am kind of a nerd in a lot of ways....I like that dichotomy.

But I am not eating raw fish or worms, or jumping out of a perfectly good plane. I also can not get past the suction cups on an octopus....Kalamari my___ .....I dont care what it is called...it is not going past these lips!!!

Gee, Go fly a Kite! That is great!
 

Me? Now what I do to relieve stress is to blow bubbles...Yeah like a little kid! I've found that when you are really stressed? You can't do it! So it really makes you step back and try again.....besides, they are pretty.
They would also drive my cats totaly bonkers...they 'just' couldn't catch them.
Now in my life...to think I turned down the opportunity to bungee jump from a hot air balloon! It was super fun to watch others...but then I don't like heights at all?
OK Where can I find web sites to find a 'pocket' kite I could go and fly? Be a useful alternative on nice days to go out in the fresh air and fly a tame one.

After all, as you said, the sky KNOWS NO the limit in the mind! -j