My dad was so thrilled with my astonishing improvement since I had my stem cell treatment for Multiple Sclerosis.  He was inspired to ask about stem cell treatment for his Type II Diabetes.  His motivation to become more proactive in his own healthcare led him to fill out the application.  Now we are heading back down to Cost Rica for his treatment in May.  Hooray, another trip back to Costa Rica. He's a good Dad. He's going to let me share his experience with you all too. 

 

     I know you don't want to talk to me right now and I can't say I blame you.  I'm sure it was quite a shock, finding me camped on your doorstep that day, with my luggage packed.  And I know you didn't "exactly" invite me in, but here I am.

     I'm certain you're probably wondering how I got your address in the first place, aren't you?  Everybody always asks me that stupid question.  It was easy really.  I looked you up in a statistical manual, calculated your genetics and
environment, crunched some numbers about your childhood illnesses, relatives illnesses, and basic habits, and I located you.  It wasn't hard at all.  I chose you because I could.

     Now, I'm not saying we have to be friends here. Frankly, I'd be a bit surprised if we got along very well at all.  You and I are very different in many ways.  For instance, I thrive on surprises, whereas you prefer to always know what lies ahead.  I enjoy a big dose of sardonic humor… you prefer a kinder, more mellow approach.  I see nothing wrong with pain and suffering… you try to avoid it.  A good time for me is kicking ass and taking no names… you prefer a reasonable fight.

     Here's the part that's probably really going to piss you off, so I might as well just get it out of the way.  To date, no one, and I mean no one, has ever been able to evict me once I decide to move in.  Oh sure, some people try to slow me down by scaring me with needles and the like, but I don't leave.  I get quiet and reflective sometimes, but I'll never leave you totally.  That you can count on, my friend.

     So here's how this is going to work with me, like it or not.  I'm here and I'm not leaving so we might as well try our best to co-exist.  You do some things for me, and I'll occasionally scratch your back (and anywhere I else I choose to itch you, just for the record).  I'll give you some good days and if I like you, maybe even a few good months or years.  I'll teach you some important life lessons about not taking things for granted, which you'll thank me for later.  I'll encourage you to get out of bed and live today to the fullest and to enjoy whatever morsel of goodness the Universe is throwing on your plate.  I'll teach you how to appreciate the simple things in life and how not to sweat the small stuff.  I'm definitely gonna make you laugh sometimes, even if you don't want to.  Likewise, I'm gonna make you cry sometimes because you need to.  You WILL learn to respect me or I'll kill you trying.

     If you think about it from my point of view, I'm not asking for much in return really.  I just want to have a good time messing you up.  A few laughs when I surprise you with being unable to walk or see.  A little chuckle for me when you accidentally wet yourself because I've messed with your bladder.  Maybe even a full, belly laugh when I make you ride around in one of those electric chairs or something.  It's all in good fun.  And again, if I like you, I may not make it a permanent event.

     So what do you say, roomie?  We got a deal?  Personally I think you're getting the better end of the stick out of this arrangement, but that's just my perspective.

     Take your time thinking over your answer.  I've got your whole life to await your response.

 

Sincerely yours,
 Multiple Sclerosis

Embryonic stem cell reversal is distraction, congressman says - CNN.com

A top congressional Republican on Sunday criticized President Barack Obama's expected decision to reverse the Bush administration's limits on embryonic stem-cell research, calling it a distraction from the country's economic slump.

Progress on MS can’t wait.  Move it… and move us closer to a world free of MS during MS Awareness Week, March 2-8.
 
Every hour someone is diagnosed with MS, a chronic disease of the central nervous system for which there is no cure.  Multiple sclerosis interrupts the flow of information between the brain and the body and stops people from moving.  Many have trouble imagining what their lives would be without the ability to move, but I know the effects of MS; I have experienced the devastation first hand.  
 
MS Awareness Week takes place March 2-8.  I encourage people to join the movement to end MS and help people with MS move their lives forward. 
 
It’s easy to get involved.  It only takes a few minutes to make a difference in the lives of the millions of people worldwide who live with this disease.
 
Some simple things you can do:
•    Visit nationalMSsociety.org to learn more about MS.
•    Tell 10 people that MS Awareness Week is March 2-8 and ask them to tell 10 people they know.
•    Sponsor a walker or cyclist in a Walk MS or Bike MS event, or participate yourself!

Progress on MS can’t wait.  Move It during MS Awareness Week and move us closer to a world free of MS.

Here is some more clarification for all of you who are interested and may still be misinformed.

I had stem cell treatment done outside the United States. Forget about politics and FDA approvals and US trials. Just try to wrap your head around the factual information.

I had 8 intrathecal injections of adult stem cells extracted from donated umbilical cord blood and 2 IV infusions of stem cells extracted from my own fat tissue.

My own stem cells that were extracted from my fat tissue are autologous stem cells, just like bone marrow stem cells are. Autologous stem cells refer to stem cells that are collected from an individual and given back to that same individual.

My stem cells that came from my own fat tissue are mesenchymal stem cells. Stem cells that come from bone marrow are hematopoietic stem cells.

Mesenchymal stem cells have immune regulatory properties. It is thought that through their regulatory effect of the immune system, they may help stop the immune attack on the myelin sheath. Mesenchymal cells also may potentially help remyelination of the affected neurons.

Currently the University of Cambridge is conducting formal clinical studies using mesenchymal stem cells for treatment of MS.

Unlike autologous hematopoietic stem cells, mesenchymal stem cells have an innate immune-modulating effect that suppresses autoimmunity without using a chemotherapy preparative regimen.

Northwestern University and Cambridge University and other U.S. institutes do recognize that a less toxic stem cell therapy is probable and makes “real scientific sense”.

There is scientific data! I did months and months of research, much more than I would ever be able to share here on a blog.

In my humble opinion, the FDA isn’t always the most efficient government agency. Politics DO have an influence. Money DOES have an influence. Their actions (or lack thereof) aren’t always just based on factual scientific information. There are other influences that play a part.

I had non-FDA approved stem cell treatment done outside of the United States because I wasn’t willing to put my health on hold until the FDA decided that the scientific research done on our own soil has the possibility of helping me stay mobile and healthy. It sure was less of a risk that taking Tysabri for 2 years with it’s black label warning, “increases your chance of getting a rare brain infection that usually causes death or severe disability.”  My copay with Blue Cross PPO insurance for Tysabri was $1450 a month.

Do you think Biogen Idec really wants me to benefit from stem cell therapy?

I apologize for not updating you all on my progress sooner. It has been somewhat of a whirlwind since the beginning of the year. I have been getting phone calls and responding to emails daily asking about my stem cell treatment experience.

I have continued to experience good results since having the stem cell treatment in Costa Rica last November. My balance is excellent and I continue to see well out of my right eye. The best is that I still have not had a bladder or bowel "incident" since coming home! The fatigue is noticeably less and my stamina continues to increase. Cognitive function is clearer, some days clearer than others. Numbness continues to lessen.

As of tomorrow I will have been off my MS medication, Tysabri, for 17 weeks. I wasn't sure if I was going to continue the medication when I got home, but so far, so good.

I call my boyfriend Sergeant Raj. He set up a regiment for me to follow to help the stem cells keep working (per his conversation with the doctors at ICM). He bought me some weights and some stretch bands and a new beach cruiser. Basically I am doing somewhat of the same physical therapy routine I was doing there. I didn't have a choice, the drill sergeant made me, but I am glad he did

The physical therapy is simple and not too overwhelming. I spend about 40 minutes in the morning using light weights (2 lb.) with my arms and legs. I stretch and I also use "chip clips" and "hair clips" to strengthen my fingers. I also either ride my bicycle or swim everyday as well. It seems like a lot, but I'm not giving this a chance not to work. I can tell that the daily exercise and movement really does help.

Because I am back working, sitting at my computer, reading, writing, and being on the phone again, I am noticing changes. I type better because of the increased sensation in my fingers. I'm reading better because I can see better. Before I left for Costa Rica, I was having trouble working at all. Couldn't concentrate, frustrated with the difficulty in typing, and was having trouble seeing out of my right eye.

Because I was feeling so much better than before I had the treatment, I did try to "push the envelope" and had to step back and reassess. If I sit too long, I notice the tingling and cold feeling coming back into my hands and feet. That was the same sensation I had before being diagnosed. The first few times it happened, it really stressed me out. But after readjusting my behavior, I realized that it wasn't permanent and that I can't go back to my old habits and work environment of before I was DX with MS just because I am feeling better. The stem cell treatment wasn't a miracle. It is a medical treatment and I need to keep remembering that I need to help my body help itself. Sounds so cliché, but it's the fact and science of how the cells work.

I am happy so far with my progress. I am still doing the "alternative" stuff I was doing before I left, like acupuncture, massage therapy, yoga, and diet. I was drinking a Chai Tea Latte mix during the holidays that was warm and sugar sweet, but I had to stop. My fingers would tingle and feel more numb the days I drank the Chai, so again I paid attention to my body and stopped, and felt better immediately.

I finally am feeling comfortable enough to increase my liquid intake. I am up to about 32 oz. of water a day. I know I NEED at least 64 oz., but I will get there. I had stopped drinking water all together before the stem cell treatment because I did not want to have bladder incontinence. I am educated and do know that just because I didn’t drink water, it didn’t mean that I still wouldn’t have incontinence. It was just a subconscious act of not wanting to deal with the bladder urgency and incontinence. The more people I talk to, the more I realize that so many of us have the same feelings, same behaviors, and same symptoms. I didn’t think I would ever feel comfortable taking about the bladder and bowl problems that sometime come with MS. The topic used to make me cry

Now I have had the opportunity to talk to other patients who have had treatment at ICM Costa Rica for MS, Diabetes, Spinal Cord Injury, and Autism. I have also spoke with patients who have been to Europe, Russia, Israel, China, and Mexico for stem cell treatments. I have been told more good thing than bad, and trust me, I had looked for the bad before I decided to try this because I didn’t want to make a mistake because of being blinded by false promises of miraculous cures. I am fortunate that I was not at such a desperate place yet because of immobility or total loss of function so that I did not just take internet stories of wellness and success with stem cell therapy as fact. I did the research, listened to classes at Stanford and other Universities about stem cells, called medical specialists ad researchers. I am lucky that I had the resources available, the clarity to still understand what I was learning, and the desire to not give in. I’m glad I made the decision to give the stem cell treatment a try.

That’s all of my update for today. Sorry it's so long and sorry it's been a while.