updated my blog

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

updated my blog

Postby Loobie » Fri Jan 08, 2010 11:08 am

Couldn't find my "updated my blog" thread so here's another one:

I just updated my blog!
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Postby LR1234 » Fri Jan 08, 2010 11:40 am

Hey Loobie, I read your Blog, thanks for putting everything in so much details, I totally understand how you feel. Even though I am not as affected as you I am very very driven and competitive and I find the fact that I can't work full time anymore frustrating.

Did you ever get the results back from Dr Haacke and your iron levels in your brain. I am thinking that MS has 2 parts...Vascular issues and then the heavy metal storage.
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Postby CRHInv » Fri Jan 08, 2010 12:43 pm

Thanks Lew! I had been waiting for your update. Bless your heart for your honesty. I am so glad you are here to really keep everyone grounded and provide so much information.

You have put some pretty big questions out there that many of us are going to be looking for the answers to also. What a journey. The family stuff is really a tricky thing. I know that you love your family so much. I think that others around us notice what we do, more than they notice what we don't do, even though what we don't do drives us crazy. (That is a hard sentence to read, sorry!)

Lew said:
Happy New Year to all and I wish a great CCSVI breakthrough year for all of us.

Here's to that!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Rokkit » Sat Jan 09, 2010 2:36 pm

Winter's kicking my butt, too, Lew. Hopefully things will look a lot different in the Spring.
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Postby ozarkcanoer » Sat Jan 09, 2010 2:54 pm

"Now c'mon stem cells, or something else (or even advances in this where they can 'tweek' something or do something they didn't know when they were in the first time) that will make this a grand slam."

Loobie,

Maybe if/when CCSVI is determined to be the cause of MS then there will be less effort spent on the old "let's find a new drug" game and more effort on stem cells or whatever else can fix the damage. Knowing the cause of a disease means being halfway to a cure. Just think how CCSVI could reshape the thinking of "The Myelin Repair Foundation", and others who are looking for a cure !!!

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loobie

Postby leetz » Sat Jan 09, 2010 4:38 pm

Many thanks for your honesty...i really think you have a natural ability to write...write what so many of us feel and lack the words that we once had to sum it up....all in all progress is progress no matter how little...i have been wondering if since the procedure...does the abilty to gain and keep muscle strength come back, or am i stuck with hardly any muscle strength for the long hull????have you noticed any changes with bulk muscle???just curious(as usual) lol........


ALSO MY MRV PIC'S ARE POSTED IN THE FORUM...MARK HELPED A GREAT DEAL...what do you think? take a look and get back at me if possible....thanx's..and GOD BLESS you and your family!!!!

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: loobie

Postby Bubba » Mon Jan 11, 2010 7:59 pm

leetz wrote:Many thanks for your honesty...i really think you have a natural ability to write...write what so many of us feel and lack the words that we once had to sum it up....all in all progress is progress no matter how little...



VERY WELL SAID!!!
Lew, you are an inspiration to us all.
Yes, progress is progress, no matter how small.
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Postby eve » Mon Jan 11, 2010 11:00 pm

O is that your blog? I came across it during my ccsvi searches on the web. You made me cry! The way you described how it is to live with MS - I have been trying to find the words - couldn't do it - you were spot on. Thank you.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby Sharon » Tue Jan 12, 2010 9:20 am

Lew -

I want to chime in here and say your blog update was heartbreaking and yet it was inspiring. You have expressed many of the emotions and feelings that so MSrs have on a daily basis.

Remember when we "stenters" started this journey? How many times did we write "if the progression of the disease stops with the procedure, than we would be okay" Each of us has recorded improvements -- some subtle, minor things --- some dramatic. Now with the improvements, we would like to have more of the "good stuff". In your blog, you say you want to be normal --- what is normal? Your normal is going to be different than my normal. Your normal is going to change as time goes by. I guess what I am trying to say is, keep yourself open and alive to many "new normals". When you have a good day (heck, even a good hour), let that be the normal for the moment. The "normal" that I think we can now count on is we are not getting worse -- the progression has stopped. (Oh, how I hope we can be saying this one year from now!!)

This has been a fascinating journey for us. We have met so many kind and wonderful people whether it be a fellow patient at Stanford, someone who has sent us a PM from TIMS, the many you have met through your blog, the doctors at Stanford, Dr. Haacke and on and on. We have expanded our horizons - we have been a glimmer of hope to many. I am looking forward to 2010 -- the journey has just begun. Continue your writing on your blog -- you obviously have touched many.

Sharon
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Postby Loobie » Tue Jan 12, 2010 9:31 am

Thanks Sharon,

You are so right about even having to break the good times down into hours sometimes. I am mercifully on the ground floor at work, but I spend a fair amount of time upstairs as well. Sometimes in the morning, I just hate those damn things as it's all I can do to make a couple of trips. However, and this is most days, by the afternoon, I can actually do one trip up them taking two stairs at a time; of course only if helping myself along with the handrail. But I do enjoy that, just wish it was like that all day! So even in the course of a day things still can very much wax and wane. After I do that though, it usually has my left hamstring saying "don't do that again please". But just being able to do it is why I do, even though it kind of wears me out. But in all honesty I couldn't even do it with the handrail in the morning; weird.

Thanks to all of you. I always hate to post anything but sunshine and daisies, but I made a commitment to not be a CCSVI salesman, just a reporter, and I have to keep that up for sure! So if, as you say, I can report in a year that I didn't progress, I think that will be an incredible day for sure!
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Postby MrSuccess » Wed Jan 13, 2010 10:45 pm

Thanks for the update , Lew. I really liked the two-stairs-at-a-time part . 8O This is very encouraging . I hope to read this summer that you are running up those stairs !

Have you heard from Mary or Mel ?


Press on , Old Man ........... Press On




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Postby Sharon » Thu Jan 14, 2010 7:54 am

MrSuccess

Were you referring to Mary of Marie?

If it is Marie, she is doing well - she is in the middle of an exciting project which does not leave her time to come on to TIMS.

Jamie (Mel) posted back in December that Mel was doing just fine. He is keeping connected through his Facebook.

Sharon
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Postby MrSuccess » Thu Jan 14, 2010 4:04 pm

Hi Sharon , I meant Marie. :?

Now you really have me wondering ...what exciting project ?

Good to hear every one of the CCSVI pioneers are doing so well.

Isn't it incredible how far and fast Dr. Zamboni's research has grown ?

Some of the posts here hint of good things to come .




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