So I am sitting here being all sharp as a tack, waiting for the legs to respond, blah, blah, blah. What to do with my time?
Connect with as many other GU liberators as possible! I'm no stalker, I assure you. Several have found me through TIMS, FB, and this blog. I now have made at least some contact with 6 liberators plus myself. When there are only going to be 20 of us total, that's 35%! Two of us have already been treated. Two more are set to go this week, and I know one man who is scheduled for next week. I am having so much fun meeting new people who will share with me something very unique. FOR NOW. I hope that very soon we will be just the first of many.
I think that we are a very unusual group. We are the only patients that I am aware of in this country who all live in the same area, and are being treated and followed by the same doctors in an official study. Have I mentioned lately how proud I am of Georgetown? My docs rock!
The closest thing that I can find to our experience is the 6 people who were treated by Dr. Sandy McDonald in Canada. Here is a story on CTV about his patients' experiences.
I know that the Stanford pioneers came from all over the country to be treated. They are my role models for trying to connect as many GU patients as want to be connected. Many of the Stanford patients have done a remarkable job of staying in touch with one another, and generously sharing their experiences with the rest of us on the thisisms.com (TIMS) forum.
So I'm not sure what I am going to do with my new connections now that I have them. Certainly nothing without their permission! I hope that eventually we can be a powerful force for the CCSVI cause. As in: Check us out! We were treated according to Zamboni's protocol, and (while this may be a little premature) look what we can do NOW!
Stay tuned on this one. I'm just getting started!
Tuesday, April 20, 2010
Friday, April 16, 2010
6 week update
I hope everyone enjoyed learning about Georgetown's Liberation study (it's official, with IRB approval and everything!) on the channel 9 news piece the other day. I know that I learned a lot about his plans for me from watching the unedited footage of Dr. T! Not the best way to get info from your doc, but this thing really began coming together after my procedure.
And how cute are my girls?? They were so excited to be on TV.
Anyway, it has been just over 6 weeks since Liberation. What's happening?
All of the good stuff is still here: warm fingers and toes, no choking, sharp mind (and wit!), much less cognitive fatigue. My better balance has made a reappearance, I am happy to report! Unfortunately, my legs are so weak that improving balance can only do so much on noodle legs.
I'm working on them, though! I am getting on my stationery bike, and doing my exercises to strengthen my core and hip adductors (I think that's what you call the muscles on the outside of the hip). I'm a speech path, not a PT, so that is not my area of expertise.
I learned from my PT that my muscles will only get as strong as my nerves will allow. Frustrating concept. But if I do everything I can do for the muscles, hopefully my body will begin healing the nerves, and meet me somewhere in the middle. I am totally making this all up, but it keeps me going!
I am not speaking without some precedent. I was on Tysabri, an MS drug that worked wonders for me until it stopped after 2.5 years:0( I regained soooooo much strength and stamina in my legs that I was able to give up my cane and scooter and walk around my whole block!
Dr. T. believes that if I did it once, hopefully my body can do it again. I have nothing to lose by believing, so I believe!
BTW: I have had the pleasure to "meet" two more people who are scheduled for Liberation at Georgetown this month. One is a woman, R., who found me as a result of the AP article, and a weird coincidence of knowing one of my daughter's friends. The other is the mother of a 21 year old man who was diagnosed last year. Same age that I was at diagnosis. I hooked up with her online. I can't imagine having the chance to nip this thing in the bud at his age! I am so excited for him, and what this may mean for his future.
Dr. T. told R. that they are going to treat a total of 20 patients in this initial study. He will follow us for two years. I now know four of us who have gotten "golden tickets". If you listen closely to Dr. T's unedited interveiw, as I have done many times, he leaves the door open to treating more patients before the end of two years if our results are impressive early on. I'm working on it, I promise!
I may be reading into it, but check it out yourself and see if you hear it like I did. I just want as many people to have the opportunity to try this as possible. It is such a simple, low risk procedure.
I appreciate the need to do it within controlled trials. But that is easy for me to say after the fact. If I was still on the other side, you can bet I would still be spending every waking hour hunting down doctors who are willing to treat this!
There was a fascinating meeting yesterday at the American Academy of Neurology. It was broadcast on the web by the National MS Society. You can see it here. One of the most important things to come out of it was a plea from Drs. Zamboni and Zivadinov. They both advocated that, for people who have run out of drug options, Liberation should be allowed, even outside of a trial. They stressed that it should still be done in cooperation with the person's neurologist, and a qualified IR or vascular surgeon. These people should NOT have to wait. Bravo!
And how cute are my girls?? They were so excited to be on TV.
Anyway, it has been just over 6 weeks since Liberation. What's happening?
All of the good stuff is still here: warm fingers and toes, no choking, sharp mind (and wit!), much less cognitive fatigue. My better balance has made a reappearance, I am happy to report! Unfortunately, my legs are so weak that improving balance can only do so much on noodle legs.
I'm working on them, though! I am getting on my stationery bike, and doing my exercises to strengthen my core and hip adductors (I think that's what you call the muscles on the outside of the hip). I'm a speech path, not a PT, so that is not my area of expertise.
I learned from my PT that my muscles will only get as strong as my nerves will allow. Frustrating concept. But if I do everything I can do for the muscles, hopefully my body will begin healing the nerves, and meet me somewhere in the middle. I am totally making this all up, but it keeps me going!
I am not speaking without some precedent. I was on Tysabri, an MS drug that worked wonders for me until it stopped after 2.5 years:0( I regained soooooo much strength and stamina in my legs that I was able to give up my cane and scooter and walk around my whole block!
Dr. T. believes that if I did it once, hopefully my body can do it again. I have nothing to lose by believing, so I believe!
BTW: I have had the pleasure to "meet" two more people who are scheduled for Liberation at Georgetown this month. One is a woman, R., who found me as a result of the AP article, and a weird coincidence of knowing one of my daughter's friends. The other is the mother of a 21 year old man who was diagnosed last year. Same age that I was at diagnosis. I hooked up with her online. I can't imagine having the chance to nip this thing in the bud at his age! I am so excited for him, and what this may mean for his future.
Dr. T. told R. that they are going to treat a total of 20 patients in this initial study. He will follow us for two years. I now know four of us who have gotten "golden tickets". If you listen closely to Dr. T's unedited interveiw, as I have done many times, he leaves the door open to treating more patients before the end of two years if our results are impressive early on. I'm working on it, I promise!
I may be reading into it, but check it out yourself and see if you hear it like I did. I just want as many people to have the opportunity to try this as possible. It is such a simple, low risk procedure.
I appreciate the need to do it within controlled trials. But that is easy for me to say after the fact. If I was still on the other side, you can bet I would still be spending every waking hour hunting down doctors who are willing to treat this!
There was a fascinating meeting yesterday at the American Academy of Neurology. It was broadcast on the web by the National MS Society. You can see it here. One of the most important things to come out of it was a plea from Drs. Zamboni and Zivadinov. They both advocated that, for people who have run out of drug options, Liberation should be allowed, even outside of a trial. They stressed that it should still be done in cooperation with the person's neurologist, and a qualified IR or vascular surgeon. These people should NOT have to wait. Bravo!
Tuesday, April 13, 2010
The long awaited interview!
If you have the time, check out the unedited interviews with Drs. Tornatore and Neville. I think they did a great job.
Friday, April 9, 2010
My TV debut has a date!
I just got word from the producer that the story on Georgetown and me will air on Tuesday, April 13th at 7:00pm on WUSA9, our local CBS affiliate.
I will post it here when it becomes available online on Wednesday. You can also check for it yourself at http://www.wusa9.com/
I will post it here when it becomes available online on Wednesday. You can also check for it yourself at http://www.wusa9.com/
Thursday, April 8, 2010
It's really not all about the legs
So I've been spending waaaay too much time thinking about myself since my kids went back to school yesterday. And fasten your seat belts, because I think that I have had an epiphany!
Right there in the "about me" area of my blog I wrote, "My biggest probs: fatigue,spasticity in legs, balance, walking." That is because walking and balance are the easiest problems to see. They are also the ones that I always say most interfere with my daily routine.
They are big; no doubt about it! But I find it fascinating that I never listed "choking several times a week" as one of my problems. I mean really, what's more important, walking in the grocery store or possible asphyxiation/pneumonia? I've always been able to clear whatever slips past my epiglottis, so it has never been a real problem. It just scares the sh#t out of the worried husband. I don't blame him. It is scary to watch!
Then there's that "fatigue" complaint. Too general, woman! Sometimes I use it to mean physical fatigue, like when my legs will not hold me up for one more minute. But I should have made a distinction between that and "cognitive fatigue." Physical fatigue is easy to see and feel. The cognitive stuff is sneakier. When it is bad, that is the time when I am least able to pay attention to exactly how bad it is! Duh.
That's why I keep the wonderfully observant husband around. He (and one of my whip-smart daughters) noticed my improved sense of humor. That's cognitive. He has pointed out on many occasions in the past few weeks that my speech is smoother. I am having much less trouble finding words, pausing in the middle of a sentence, and organizing my thoughts in general.
What is fascinating about all of this is that I am a speech-language pathologist! Clearly, being the "subject" makes it difficult, if not impossible, to be an objective evaluator. The husband has spent the past 20 years, including college and grad school, with this SLP, so he basically has an honorary degree in this stuff.
He even thinks that I am typing faster. Can't say if that is a motor or a cognitive improvement. It's still progress! And we have both noticed that I am mentally sharper in the evening than I was Pre-lib.
The bottom line: I think that I have been putting way too much emphasis on tracking my progress by what happens with my legs. Yes, life will improve dramatically if and when their stamina and strength improve. But people live with poorly working legs, or without them entirely, all the time!
Talk to anyone who has a loved one with dementia, or Alzheimer's, or stroke damage. [Edit: OR significant cognitive impairment due to MS!] Ask them if they would rather have that person walking or communicating. The answer is obvious.
So.
I am going try to stop obsessing about my legs. I'm going to keep exercising them, but stop using them as my barometer to measure change.
Instead I am going to pay attention to and celebrate the other important improvements attributable to Liberation. The first few I would like to acknowledge are:
successful swallowing, clearer thinking, and razor-sharp wit. (O.k.- the "razor-sharp" part may be up for debate, but it's MY blog and I can call it anything I damn well please.) Yeah me!
Right there in the "about me" area of my blog I wrote, "My biggest probs: fatigue,spasticity in legs, balance, walking." That is because walking and balance are the easiest problems to see. They are also the ones that I always say most interfere with my daily routine.
They are big; no doubt about it! But I find it fascinating that I never listed "choking several times a week" as one of my problems. I mean really, what's more important, walking in the grocery store or possible asphyxiation/pneumonia? I've always been able to clear whatever slips past my epiglottis, so it has never been a real problem. It just scares the sh#t out of the worried husband. I don't blame him. It is scary to watch!
Then there's that "fatigue" complaint. Too general, woman! Sometimes I use it to mean physical fatigue, like when my legs will not hold me up for one more minute. But I should have made a distinction between that and "cognitive fatigue." Physical fatigue is easy to see and feel. The cognitive stuff is sneakier. When it is bad, that is the time when I am least able to pay attention to exactly how bad it is! Duh.
That's why I keep the wonderfully observant husband around. He (and one of my whip-smart daughters) noticed my improved sense of humor. That's cognitive. He has pointed out on many occasions in the past few weeks that my speech is smoother. I am having much less trouble finding words, pausing in the middle of a sentence, and organizing my thoughts in general.
What is fascinating about all of this is that I am a speech-language pathologist! Clearly, being the "subject" makes it difficult, if not impossible, to be an objective evaluator. The husband has spent the past 20 years, including college and grad school, with this SLP, so he basically has an honorary degree in this stuff.
He even thinks that I am typing faster. Can't say if that is a motor or a cognitive improvement. It's still progress! And we have both noticed that I am mentally sharper in the evening than I was Pre-lib.
The bottom line: I think that I have been putting way too much emphasis on tracking my progress by what happens with my legs. Yes, life will improve dramatically if and when their stamina and strength improve. But people live with poorly working legs, or without them entirely, all the time!
Talk to anyone who has a loved one with dementia, or Alzheimer's, or stroke damage. [Edit: OR significant cognitive impairment due to MS!] Ask them if they would rather have that person walking or communicating. The answer is obvious.
So.
I am going try to stop obsessing about my legs. I'm going to keep exercising them, but stop using them as my barometer to measure change.
Instead I am going to pay attention to and celebrate the other important improvements attributable to Liberation. The first few I would like to acknowledge are:
successful swallowing, clearer thinking, and razor-sharp wit. (O.k.- the "razor-sharp" part may be up for debate, but it's MY blog and I can call it anything I damn well please.) Yeah me!
Tuesday, April 6, 2010
Day 34: The good, the bad, and the unchanged
Before my Liberation I desperately scoured the forums and blogs searching for someone who had been treated who "looked" like me. If I could find that elusive 40 year old woman, with RRMS, EDSS of 6.0, who had mostly motor involvement, not currently on any disease modifying drugs (DMDs), treated with only balloon angioplasty, it would be my crystal ball experience!
Alas, my twin out there who blogs or diligently fills out her tracking thread does not exist. I was on my own. This was not really a surprise to me. After all, I have many friends with MS, and none of us look anything alike when it comes to our symptoms, drugs of choice, length of disease, hair color, etc.
I promised myself that once I was Liberated I would keep this blog for anyone who thought they might see themselves in ME!
So in the past 34 days what's really been happening? In a nutshell, there's been a lot, and not much going on, all at the same time!
-My feet and fingers have stayed consistently warmer.
-My balance that was rock solid for 6 straight days, is not so consistent anymore. Pre-lib it was consistently bad. Now it is inconsistently good. Confused? That makes many of us!
- Fatigue might be a little better. It's hard to quantify without spending my whole day monitoring it. And I have waaaay more important things to do than that!
- Still have only choked once in 34 days. And that was at the end of a very long, busy day. So I'm chalking (choking?) that up in the win column.
-Spasticity in my legs is the same. In fact my left hamstring is giving me a little more discomfort than before. Nothing a little heating pad action can't fix, though.
- As the weather gets warmer, I will be watching and feeling to see if the heat gives me as much trouble as it has in the past.
Other than that I still feel like the woman I was 35 days ago. I still have MS, still use my cane and Segway, still try to pace myself throughout the day, and still have to abort activities that I would have liked to accomplish because my body has just had enough.
The biggest difference is my outlook. Dr. T said in the AP article that, ""It's a marathon, not a 100-yard sprint." I was so hoping that he was wrong, but as usual I think he is right on.
Still, my future has not felt this promising in 20 years. When I have a really bad day I don't automatically think to myself, "Uh oh, you're progressing or having an exacerbation, woman."
Instead I wonder if I have possibly restenosed. What a crazy, but exceedingly more pleasant, and fixable possibility!
There have been discussions on the CCSVI forum at thisisms.com about "placebo effects" and people only sharing the good stuff. I do not think that my 6 days of excellent balance was an illusion, or even wishful thinking. I also readily admit that no amount of optimism on my part has compelled my body to move any faster than it is willing or able to go.
While I will admit to some frustration at the pace of improvements, I really can't complain. I now actually have the possibility of improving! And if I do complain too much, you are all welcome to come over and smack me upside the head!
One last thing: I got an email from the producer of the TV interview. It will not be airing this week. She mentioned something about holding it until the Buffalo study is released at the end of this month. That will only make the story bigger, so I'm o.k. with that!
Alas, my twin out there who blogs or diligently fills out her tracking thread does not exist. I was on my own. This was not really a surprise to me. After all, I have many friends with MS, and none of us look anything alike when it comes to our symptoms, drugs of choice, length of disease, hair color, etc.
I promised myself that once I was Liberated I would keep this blog for anyone who thought they might see themselves in ME!
So in the past 34 days what's really been happening? In a nutshell, there's been a lot, and not much going on, all at the same time!
-My feet and fingers have stayed consistently warmer.
-My balance that was rock solid for 6 straight days, is not so consistent anymore. Pre-lib it was consistently bad. Now it is inconsistently good. Confused? That makes many of us!
- Fatigue might be a little better. It's hard to quantify without spending my whole day monitoring it. And I have waaaay more important things to do than that!
- Still have only choked once in 34 days. And that was at the end of a very long, busy day. So I'm chalking (choking?) that up in the win column.
-Spasticity in my legs is the same. In fact my left hamstring is giving me a little more discomfort than before. Nothing a little heating pad action can't fix, though.
- As the weather gets warmer, I will be watching and feeling to see if the heat gives me as much trouble as it has in the past.
Other than that I still feel like the woman I was 35 days ago. I still have MS, still use my cane and Segway, still try to pace myself throughout the day, and still have to abort activities that I would have liked to accomplish because my body has just had enough.
The biggest difference is my outlook. Dr. T said in the AP article that, ""It's a marathon, not a 100-yard sprint." I was so hoping that he was wrong, but as usual I think he is right on.
Still, my future has not felt this promising in 20 years. When I have a really bad day I don't automatically think to myself, "Uh oh, you're progressing or having an exacerbation, woman."
Instead I wonder if I have possibly restenosed. What a crazy, but exceedingly more pleasant, and fixable possibility!
There have been discussions on the CCSVI forum at thisisms.com about "placebo effects" and people only sharing the good stuff. I do not think that my 6 days of excellent balance was an illusion, or even wishful thinking. I also readily admit that no amount of optimism on my part has compelled my body to move any faster than it is willing or able to go.
While I will admit to some frustration at the pace of improvements, I really can't complain. I now actually have the possibility of improving! And if I do complain too much, you are all welcome to come over and smack me upside the head!
One last thing: I got an email from the producer of the TV interview. It will not be airing this week. She mentioned something about holding it until the Buffalo study is released at the end of this month. That will only make the story bigger, so I'm o.k. with that!
Saturday, April 3, 2010
A beautiful day!
Yesterday we took the kids down to the Mall to join the other crazy people looking at the cherry blossom trees around the Tidal Basin. Never mind that we have beautiful cherry blossom trees in our own neighborhood, and especially abundant ones in a neighborhood very close by. We had to go all official!
We spent two hours, and the husband calculated over THREE miles, touring our beautiful capitol! It was a blast.
We spent two hours, and the husband calculated over THREE miles, touring our beautiful capitol! It was a blast.
Here we are at the top of the Washington Monument Well kinda!
This is my awesome Segway. For those of you who are interested, it is an older model with a stationary column. I am sitting on a unicycle seat that rides on a track so I can slide back and forth to propel and stop. The seat and track fold down when I stand to ride. It was an additional item that I bought when I got the Segway. Worth every penny! With three miles to do, I sat a lot!
My legs were totally wasted when we got back to the car. It took a couple of hours before I felt confident walking again without a cane and a strong arm to hold on to.
___________________________________________________________
I'm still waiting to hear when the news piece will air this coming week. They were also able to get footage of Dr. Neville during an actual procedure! I'm sure that it is going to add a lot of value to the story. Can't wait to see it!
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