The Sale of Hope, The Promise of Cure, Sometimes At A Discount, Part 1

ADDENDUM:  Recent developments in DR Stem Cell Programs and it's not good!

       There is no population more fragile nor desperately searching for the hand of cure than the parents of the disabled.  There is no greater dread, no greater fear, no darker empty space than the loss of child.  There is no greater source of anxiety than a parent's knowledge that their severely compromised child may outlive them.  There is no greater pain which is felt at the core than a parent's sight of their child in agony, seizing, intubated, unable to move or speak.  Parents who I have come to know would readily trade places with their child because their pain is so deep.
       There is no deeper crevice in hell than that place reserved for those who sell false hope to parents of the disabled and make claims which are incapable of substantiation or who refuse to allow for a thorough examination and review of their claims.  The only charlatans who have an even lower place in hell are those who couple their claims with evangelization and religion.

       I blog, I read many blogs, I join many yahoo health groups, sometimes just lurking.  Many parents of the severely disabled also lurk, share very sad and difficult stories, seek friendship and compassion and above all search for answers which too many are willing to provide.  The most dangerous places on the web are the heavily moderated groups which allow for no questioning, no dissent, no requests for research studies or documentation of success...but do encourage stories of desperate woe and miraculous cure.  These moderators are the modern day "snake oil" salesmen.  Today, they sell stem cell therapy for the disabled and dying, coupled with the repetitive Bible quoting, and off-shore.  Parents flock to these groups, too wearied by life to deeply search for the truth of this hope.
       I have joined a number of dedicated stem cell groups.  I can say that the parents are among the most honest and desperate I have met.  The moderators, especially for the programs in the stem cell programs are vile.  They will not allow posts which relate to embryonic stem cells, they will not allow posts which request authentication beyond parent testimonials, they will not allow posts which question the role of placebo or normally expected change and development.  They will not provide answers to nor allow posts which ask for the backgrounds, qualifications, research and publications of the stem cell centers doctors. God forbid that you ask why they use adipose versus pluripotent stem cells? In many cases that I have researched, the M.D.'s name is virtually unknown by any search engine and Medline has no listing of any research they conducted.  Medra's medical guru is a psychiatrist.  The new Dominican Republic "Stem Cell Project" has a medical director who is "unGoogleable" but was an evangelist for 17 years (credentials to which I would entrust my son?). I forget he's taking a 4 day workshop in stem cell..... Google produces no results except press releases through yahoo chat groups.  His comments to questions in StemCellsDR are also connected to "in Him" stuff.  Strangely he is  linked to the controversial developer of the now defunct "Miracle Mountain" HBOT programs.  Lately I have found links to the Domincan Republic programs in fundamentalist sites, i.e. Damascus Road.

     There are no active and viable web sites for these places with pictures, description of facilities or listing of staff and credentials.  They are all off-shore where there is little regulation of medical practice.  Some attract parents' attention because of low prices, other because they are coupled with a hotel and nice vacation package, others because they boast of stories which are unverifiable.  Ironically, others are packaged with fundamentalist Christian themes.  Delusions or Deceptions?  Maybe a little of each.
       Given a son with quite severe brain injury, I have spent an inordinate amount of time and spoken with many people.  Some have spent $30,000.00 for a treatment and have noticed small gains which could be attributed to a host of factors including placebo, normal development or outcome expectations.  The new Dominican Republic programs promise treatment of less than $5,000.00.
       No advice as to which way to proceed; just a host of cautions.  Stem cell research is in its infancy. Getting the cells to the place they are supposed to be and having them switch on the regulatory process is a very complex matter.  We need to remember that there is still no cure for the common cold.  I suspect that this cold will be cured before there is a cure for genetic anomalies, cerebral palsy, autism, spasticity or severed spinal cords.  There is a distant hope and promise, but we are not there yet.  It is so very important to validate these off-shore claims.  If the iterations of cure and vast improvement were real, every clinic in the US would establish stem cell centers...think of the money that could be generated from health insurance providers.

HAPPY BIRTHDAY, ADAM !!!!!!!! January 14, 2011

     Well, my son, today or tomorrow (depending on which part of the world you're in) you are 25 years old!!  Actually, it's 12 1/2 years  since that day that you were under water for 25 minutes.  So today is a celebration of your birth and your re-birth.  You were a hockey star and now you are a rehab star...always, always each moment of each day working at getting better, at healing and at enjoying life.  Your eyes sparkle, your smile melts the coldest of hearts and your spirit is indomitable.  You have never given up on anything nor will you ever concede to adversity in the future.  So this blog post celebrates your first quarter of a century and allows the world to see the gifts that we are giving you this year.  I hope you like, or at least tolerate these presents.

Those were the days!

Yup, he stopped the puck, as usual!

 
    Just to remind you, that we were all young once, a family of four circa 1989, a AAA goalie for the Springfield Jr, Indians in the mid nineties. Something changed, fate moved us all in a new direction.  You knew long ago that life altering events were evolving and we as a family would evolve to a higher plane of living, loving and understanding with you.  We all grow on a daily basis and learn about the intimate nature of reality, life and people.  This learning is not always a pleasant experience, but always enlightening.  So here are our gifts to you on this day.

ABR targeting the pelvic floor

   The remainder of this post contains adolescent humor of which I would not deprive my son.  If adolescence and it's innate perversity offends you, this might be a good place to stop reading.
    Gift one:  this is not what it appears, then nothing really is.  We have learned that ABR helps to strengthen your core, normalize your structure, move you from here to mobility and function.  Sorry, but you're stuck with this therapy for 4-5 hours a day.  By the way, we are working to normalize your pelvic floor, the exercise has nothing to do with scatological stuff, so just relax and enjoy.  This is only one of four or five daily prescriptions.  Most of the other exercise allow you to enjoy pretty blond chicks on TV.

ABR machines, bladders, wrapping and Ollie

       I know, if the day time manual ABR isn't annoying enough, we strap you with inflating bladders, foam, wraps and hook you up to two machines for 10 night hours to help with the process of eliminating that damned spasticity.  Actually, it also strengthens your lungs and digestive system.  So you have Ollie and your TV until you pass into restful slumber.  Remember we are doing these awful things to you because we love you, not to annoy you.

One cold laser point to release Moro Reflex

       As if the indignity of ABR isn't enough, we also give you the gift of 45 minutes of daily cold laser to integrate the primitive reflexes which all popped up to the surface during the accident.  The cold laser helps to extinguish and integrate those no longer useful reflexes which hinder healing.  Please note that the picture is intended to preserve your modesty and my aging.  It does relax you and  you can watch TV unless you turn to look at me with a scowl.

      I could also write pages on all the other indignities to which we subject you: sucky pureed meals, non-alcoholic drinks, yucky supplements and unmentionable procedures.  We do this to you because we love you...really!!!

       Now for the real gifts:  You love nothing more than movies with scantily dressed blonds. And yes, I know that only blonds need apply.  What upstanding handsome 25 year old wouldn't want one of these!  So here you are:

Your guess is as good as mine

      And finally, you laugh...all the time.  Some time you smile at people, some time you laugh at TV shows or your favorite movies, usually Jim Carrey or Adam Sandler.  Some times you laugh at your favorite movies like Home Alone or the Mighty Ducks.  But, Adam, I know there is one time that you howl with the heartiest of laughs...there is nothing which makes you laugh so irreverently as when you see very fat people squeezed into tight, polyester clothes.  This laughter is embarrassing to me, but I allow it because I know that you are my son, so alike me. Your mom wouldn't let me post the pictures I wanted to, so I showed them to you privately.  So here is my gift to you (against my better, but poor judgement): your all time hero...Jim Carrey!!

Adam's all-time hero: Jim Carrey

       Happy birthday, my hero!  While I apologize for all the indignity to which we subject you...it is because we really love you!