Guillain Barre Info

It's been brought to my attention (and thus occurred to me ;) that I probably haven't explained Guillain Barre Syndrome or GBS very well. That is, what it is, and where it came from. In all likelihood, it has been caused by the 9 cycles of the experimental drug SGN-35 I received over the last several months. There are only 2 other people who've developed this condition out of over 300 people in the world who've tried the drug, what luck!

Here's a clip for GBS I found on the net:

Definition
By Mayo Clinic staff

Guillain-Barre syndrome is an uncommon disorder in which your body's immune system attacks your nerves. Weakness and numbness in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body.

The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness such as a respiratory infection or the stomach flu. Luckily, Guillain-Barre syndrome is relatively rare, affecting only 1 or 2 people per 100,000.

In its most severe form, Guillain-Barre syndrome is a medical emergency requiring hospitalization. There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. And most people do recover completely.

Causes
By Mayo Clinic staff

The exact cause of Guillain-Barre syndrome is unknown. In about 60 percent of cases, an infection affecting either the lungs or the digestive tract precedes the disorder. But scientists don't know why such an infection can lead to Guillain-Barre syndrome for some people and not for others. Many cases appear to occur without any triggers.

In Guillain-Barre syndrome, your immune system — which usually only attacks foreign material and invading organisms — begins attacking the nerves that carry signals between your body and your brain. Specifically, the nerves' protective covering (myelin sheath) is damaged and this interferes with the signaling process, causing weakness, numbness or paralysis.

Like I mentioned, mine most likely wasn't caused by an infection but the drug although no one has been able to explain why...

I have a feeling that if this eventually goes away, it's going to take months. I just have to continue to adjust to being disabled. That said, I'm going to keep rolling...

I can't help but wonder what may come next... I guess you could say that I've become a bit cynical.

Thanks for the support :)

How to Measure "Progress"

Very carefully because to be honest, there's not a whole lot of tangible progress to be measured...

I notice small things like being able to push the button on my camera and using my right hand to zip up my jeans (my right hand is much worse). Maybe these are signs the strength is returning in my hands, this was the last thing to go... My neurologist said that my functions will return in an orderly fashion (if they return) i.e. the functions that were last to to go are the first to return. I'm working really hard to try and type rather than hunting and pecking as I think it's good PT but it's really frustrating, ugh!

In fact, I have to say that everything I do is majorly frustrating so I find myself laying in bed quite a bit, mwah mwah mwah... As if refractory cancer isn't hard enough to deal with and you throw in this Guillain Barre Syndrome -- sometimes I wonder how much more I can take. I've discovered HULU though and seek out funny stuff on my computer to try and keep my spirits up;) I just finished the last episode of Saturday night live and that Zack dude with the beard from The Hangover was the host and he's crazy. Vampire Weekend was the musical guest and they're pretty talented young musicians. After all these years, SNL still has it!

So I'm back in Florida and it's finally hot here, yesssss! I'd like to get to Lakeland to check out the Tigers in spring training as I'm excited for baseball this year :D I have a week before I leave for New York and thought it'd be fun to check em out before I go.

I've also booked the trip to Houston (MD Anderson) April 2nd. I've recruited my best and closest advocate (my dear Jackie) to join me... After my appt. in Houston we'll be in a rental car heading for Austin for a couple of days as she's never been there. Austin Rocks!!

Ok, I'm done trying to type... I wanted to finish by sending out prayers to Jeremy from the Hodge Forum who is fighting for his life right now at NYU hospital. His wife Maggie has been so gracious and brave to keep our Hodgkins community up to date regarding his condition. Jeremy, according to his doctors, has the most agressive disease they have ever seen and they just can't seem to slow it down. He's suffering pretty bad and has asked to be admitted so his kids don't have to see him die at home, so sad... My heart goes out to those guys.

Hope they find peace...

Powering through..

Just finishing up my 4th IVIG infusion. Still no noticeable improvement, ugh. Have some pics on my phone that I thought I'd share to break up the monotony...


Was able to catch a Wings game at the Joe Friday! Used my hopefully temporary handicapped status to get seats from guest services that didn't require using stairs. Still sore however from the walk to the arena from the car...


Check out all the banners in the rafters. There's a reason why they call it "Hockeytown" here :)


Two great caregivers, my Mom and Rich (can't forget Chili :)


Chili running up the stairs to visit me in my "cave".


Chili working on her suntan!


My infusion nurse Kip is a musician and he brought me a uke to goof around with. He taught me how to play over the rainbow! It's only 3 chords and I'll keep practicing as a fun physical therapy exercise :o)

IVIG Update

So, I was approved for home infusion of IVIG after my doctor threatened (the insurance company) to admit me to the hospital... They were dragging their feet and would've had to pay for a hospital stay plus the drug if I were to be admitted. In the end, I think they made the prudent decision and ok'd the outpatient/home infusion which benefits everyone.

I thought I'd be feeling some relief already but unfortunately I still don't have any strength in my hands and need to lean on something while standing (not to mention walking like a duck!)

I re-booked my trip to New York and also planning a trip to MD Anderson in Houston to see the renowned Lymphoma specialist Dr. Younes. They have a bunch of clinical trials there that sound interesting...

That's it for now, looking forward to when I can type again as I have a lot on my mind!

Change of Plans

I have to keep this short as I don't have the patience to hunt and peck right now... Instead of going to New York like I planned, I'll be flying up to the D Tuesday for IVIG treatments. I've been officially diagnosed with Guillain-Barre Syndrome (http://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome) and because I was diagnosed in Detroit, it's too diificult to get the treatments here due to the f'd up state of affairs regarding health insurance. No need to go there now though...

So, I'll be getting the IVIG over 5 days at 5 hours per infusion due to the viscous nature of the stuff. Not exactly sure if I'll be getting infused in the home, as an outpatient or have to be admitted to the hospital. Depends on what Aetna says...

Once I get this taken care of, I'll decide what I'm going to do next to manage my disease.

Can't wait to get my hands back!!


Me before IVIG (Croc pic taken earlier this week in the Everglades)


Hopefully me after IVIG (Roseatte Spoonbill pic from the Everglades)

Update

Sorry no posts lately, I've been travelling down to the keys with friends and it's pretty laid back down here!

Nothing's much changed which is good and bad...

Hope to update when I get back.

Back "Home"

Yeah, I guess this is now home (SoFlo, at least for the moment). Just sitiing here at the pool doing my sun therapy and it feels great! I woke up this morning with a sense of calmness that was really nice (have no idea where it came from...). Just tried some takeout from this Turkish restaurant and it was pretty tasty. In case you haven't noticed, I like to indulge in as many different cuisines as I can. I have to say Meditteranean food is hard to beat when it comes to being tasty and healthy.

The ball is rolling with regard to getting treated for this neuropathy. My doctor has corresponded with my friends' doctor at the University of Miami and hopefully will soon have enough evidence to get the drug company SeaGen to agree to pay for my IVIG treatments ($5-$10K per infusion). This can't happen soon enough; seems like this is still getting worse even though I've now been off SGN-35 for over 3 weeks. I now have trouble just standing without having to lean on something or somebody. Not to mention, my hands are now almost completely useless.

The thing that gives me hope is the knowledge that this is only temporary (according to my friend Kurt) and I just have to be patient...

I have guests coming in tomorrow and they'll be able to help me out which is good. All I have to do is be a tour guide which I should be able to handle ;)

Alright, time to get back to my sun therapy, ahhhh...!