Thursday, July 18, 2013


As I sit at my desk labouring over this computer screen with only one eye, the title of this blog is a question I’ve asked myself for years but recently I have struggled for an answer in more despair.  As I wrote in my last blog, I was experiencing an attack, with MRI verification and stated that I would report back on my progress, well there hasn’t been any reporting because there hasn’t been any progress, at least good progress that is.  I knew for sure that I was in an attack since the end of April when I had my MRI.  It started out slowly not creating a huge concern for me.  However once it was established in my body the concern grew rapidly!  My balance was terrible and the neurological discomfort I was experiencing in my feet and lower limbs rapidly turned to pain.  There wasn’t any consistency just misery, one minute my feet would feel like they were on fire and the next feel like the burning sensation that occurs with extreme freezing! My ability to walk, even around my house was becoming severely impacted; I just couldn’t move my legs or pick my feet off the ground!  It was at this point that I was seriously considering taking prednisone but decided to tough it out instead.
This attack had similarities to many previous episodes but also exhibited some very different characteristics.  The pain from my feet and lower limbs began to subside, not ever disappear but become much less bothersome.  What was now happening was the neurological abnormalities were moving up my body and entering my hips, mid section and torso.  The numbness and loss of feeling was growing and the electrical vibrating sensations that had become so infrequent they were barely noticeable anymore were now back with a vengeance!  Not to end there…my fatigue factor was growing seriously and not just with my legs and general energy but into my hands and forearms.  It was as if the attack was gradually moving around and up my body.  It got to the point that I couldn’t work on my computer for more than 15 minutes before my hands could no longer navigate my mouse or keyboard properly without taking at least a 2 hour break.  There was just no strength or endurance in my hands, I fumbled with everything and could barely use cutlery, my wife had to dish up my dinner and cut my meat as though I was a five year old!  It was so bad that I could not even ride my scooter for any length of time because my hand and wrist would completely fatigue out from constantly and repetitively controlling the throttle with my finger and thumb.  That really sucked but there was an even shittier circumstance to deal with.  My butt had gone numb and I couldn’t really feel touch or sensation.  I think it’s common when dealing with “number 2” on the toilet that most of us are either a lefty or a righty when it comes to the wipe, I’m a righty and given the lack of feeling and weakness in my hand I couldn’t even wipe my ass properly!  I’ve never been one to hold back details when it comes to difficulties of dealing with MS, I can’t be embarrassed about having this terrible disease or the difficulties it creates so there you have it.  It is degrading and uncomfortable but that’s how it is, fortunately I did not require assistance with my toilet troubles!  My hand weakness lasted for about two weeks before starting to recover, I can’t say that it has recovered because I haven’t really tested it but it’s definitely not the problem it was.
So as this attack seems to jump around my body, my hope was that as it moved up my body it would eventually exit from the top, dreaming that I had a skull cap that I could just flip open and let all the MS problems escape from my body.  Yeah just a dream, unfortunately my problems didn’t end there.  My balance difficulties never seemed to improve much and it seemed that I was becoming dizzier.  This latest problem was not diminishing but growing and beginning to effect my vision.  I didn’t realize what was happening until one evening flipping through the on-demand guide looking for a movie that I couldn’t read any titles or words on the screen.  I could still see the picture but focusing to read was not possible and I finally realized everything was so blurry because I was experiencing double vision!  Double vision is not an uncommon symptom but something I hadn’t experienced until now, OH JOY!  This latest problem escalated quickly once I realized what was happening and within two days my vision was hooped.  I had lost the vision in my left eye before due to optic neuritis but this sensation was even more troubling.  A new disability that I was not prepared for, vision affects everything!  No depth perception, unable to stand without extreme vertigo making getting around with just my cane very difficult and dangerous.  Now this is when the title of my blog really came to life.  ENOUGH ALREADY!!!!!  I’m tired of fighting this beast, Lord I don’t know how much strength I have left, why must the trials I face never end?
This new vision difficulty was too much; I didn’t want to try to tough it out any longer and called the MS clinic for a high dose prednisone prescription.  Tomorrow will be my fifth and final dose…effectiveness yet to be determined.  The double vision is still in full force but I do think it’s improving, I can’t do anything other than sleep without an eye patch but at least I can see with each eye so I move the patch from eye to eye which makes it easier but in a vertical position I can get dizzy by just moving my head!  So with such problems standing or walking I’ve resorted to pushing myself around the house on my office chair.  That’s not so bad; at least it gives my legs some exercise, especially when I hit carpet!  The other good thing is that I have energy to move myself, I’ve been feeling stronger and my legs are moving much better so I’ll attribute that benefit to the steroids and just keep praying that my vision will normalize soon.
This last attack is now coming up to 3 months and has had so many devastating facets to it but it’s really tough when the emotional outweighs the physical.  I recently had to deal with one of the saddest MS experiences that I can recall.  As my physical abilities have really diminished since my return from India, I am no longer able to carry on with some very important rituals.  I live in a bungalow so almost all I need is located on the main floor but our children’s bedrooms are on the lower.  I had a ritual with my daughter to take her to bed, have her read a story to me and tuck her in for the night.  As my walking deteriorated I found it too difficult going up and down the stairs and had to explain to my little girl that daddy could no longer take her to bed.  That was SOOO hard but she accepted it quite well to my surprise however initial reactions can be deceiving.  After watching a movie one night she was falling asleep, very tired which can elicit different emotions.  After waking up (sort of) she became very emotional with the thought of going down to bed on her own, she just sobbed with tears and couldn’t speak.  I asked her if she was upset because daddy couldn’t take her down to bed anymore, she shook her head no but it was written all over her face and cutting my heart to pieces.  Even today I can’t think about that moment without breaking into tears.  Lorelei took her to bed but she still couldn’t talk so she just nodded her head to the questions Lorelei was asking and it’s quite obvious she’s so upset because of what’s happening to her dad.  Since my daughter is the youngest it’s hardest for her to hide her true feelings but the simple fact is that everyone in the family is affected.  My son seems to keep these feelings bottled up inside but as things deteriorate I can see changes beginning to occur in his demeanour.  The horrific circumstances brought on by multiple sclerosis don’t just affect me; it’s hard on the whole family!  Of coarse my mother is devastated to see me continue to deteriorate and I hate to even fathom the uncertainties of life that my wife is forced to contemplate.  Then there are my two new stepsons who are not used to the disastrous outcome that MS can create, not to mention my own siblings.  It’s HARD any way you look at it and it just seems to get more complex as the disease progresses.  However love and sticking together as a family will get us through it all.  I explain to my children that their dad is very strong, I won’t let myself get beaten and when my strength isn’t enough I have the strength of Jesus and he can pull us through anything!  I have two constants in my life, God and the love of family and these constants will sustain me through everything I must face.
So finishing off this blog on a happy note is satisfying considering all the crap I’m going through.  Everything else aside, I am so very blessed to have so much love and support to surround me.  God brought my beautiful wife into my life with her unconditional support and love and changed everything for the better.  I grew up in a family of six and who would have ever thought that I would have my own family of six.  Our oldest is 18, then 16, 14 and lastly our little darling comes in at 10.  Come September our 16 year old son will be moving in with us full time to finish high school and that makes for a full house.  I share custody with my ex-wife so getting a reprieve from each other every other week I think will be healthy for the kids; I suppose Lorelei and myself too.  At any rate having a large, loving and supportive family life is awesome even though it comes with many challenges.  It’s almost comical, we’re living a sort of new age Brady Bunch and for anyone that can remember that TV show, it was a lot of fun!  Only bad part is that we’re missing Alice the maid, she would be a definite bonus!    
So as long as I can keep emotions on the lighter side and focus on the many blessings that God has bestowed upon me and my family, I can honestly say: LIFE IS PRETTY GOOD!

Friday, June 7, 2013


For starters, I’m blown away by the incredible impact my last blog has had.  I’ve had positive feedback from almost everyone, a few noted exceptions from self serving, dishonest individuals but otherwise people, mostly from the MS community; have expressed gratefulness for coming forward with the truth about my experience.  On the other hand I’ve been attacked and accused of some terrible things.  My decision to come forward with the truth about Inamdar Hospital was only motivated by my desire to save others from spending a fortune subjecting themselves to the same horrible experience that I went through.  Most of the attacks and accusations that I speak of have not come from the CCSVI Locator site or other places that my blog has been posted; no they have come from email exchanges with Dr. Doug Broeska.  They have been pointless because he is not factual or honest about anything and really can’t refute anything I have written.  I have to explain to him that I have everything documented in emails and have proven where every “deliberate falsification and misquotation” that he accuses me of has come from on the CCSVI Clinic website. I am not getting anything for this (other than some nasty insults and accusations) and after this blog I will be finished with this mayhem.  I’ve done what I consider to be my moral and ethical duty, I don’t want to fight!  I am in the midst of an MS attack; my fight against MS is enough for me at the moment.  In the past two days I’ve had two falls, my balance is just terrible!  I’ve become somewhat of an expert when it comes to falling without getting injured.  Last night was a different story; I fell in the bathroom when it was dark.  I think I went to lift my hand to guide myself with the wall but missed the wall and tried to stabilize myself on an open shower door!  Apparently it didn’t work very well; I went down hard with my back hitting the shower door frame and my head smashing into the shower floor!  OUCH!!  It scared the heck out of Lorelei and reinforced the principle in both of our heads that it’s time to take care of myself and put all this crap behind me.  I have always been an extremely positive person and do not wish to let anymore negativity enter my life.  I don’t need to deal with anymore stress or anxiety, life goes on and I need to concentrate my efforts on my family and recovering from this attack.  Having said that I will publish one more post in response to the disparaging letter and video that was posted on the CCSVI clinic website.
It has been suggested several times that someone else must have written the blog for me, come on people, I’ve had a blog for a very long time and if someone can’t recognize my writing style then go back and look through my postings over the last several years to reassure yourself that I’m authentic.  It’s called MY MS under the URL
I would suggest that perhaps someone else is writing for others, ie the letter apparently written by Dr. Malik.  (Hello Doug)  This letter is far different than what I expect the language to be from Malik but whatever…I have expressed nothing but praise and gratitude for Dr. Malik.  However I will now address the fallacies that have been opened up.  For starters it’s claimed that “he was evaluated by myself and neurologist Dr. Majumdar and was determined to be a moderate disability of 6.5 EDSS on his arrival at the hospital”.  Complete nonsense, I arrived at the hospital at approximately 3:30 am and Malik was the only doctor I met, period!  I think there was only one other doctor that introduced himself to me but not with any explanation of his role in my care, I think he was a resident doctor.  I did not see a neurologist the entire time I was in the hospital, one of my documented complaints!  Next it is written “throughout the following days of his April, 2013 visit at CCSVI Clinic, the series of procedures—all filmed for later reference—went as expected, and Mr. Chuckry responded very quickly to stem-cell engraftment with significant improvement in mobility after only a few days”.  I ask where are these videos and the documentation for the stem cells that were injected into my body.  Then the claim that I responded with significant improvement in mobility after only a few days, where did they get this from?  I was doing pretty well in physio therapy but significant improvement in mobility is completely false!  More than anything my improvements came from my own focus, I was shown what I was doing wrong in my movements and worked hard to improve the mechanics of my walking which made a big difference. 
Then comes the statement “At no time did he or Mrs. Chuckry express any concern at the way the therapies were being conducted; in fact, they complimented staff on the way they were being treated in the hospital and remarked upon the competence of the staff”.  In fact we did express dissatisfaction at the way therapies were being conducted. Where are the videos that show my wonderful wife’s tears and anger?  Of course they don’t want to show how upset we were when a representative entered my room and in broken English informed us that the police will arrive in 2 hours to take me to the station.  What was this about, it completely shocked us and is just another example of their lack of communication.  There was no way anyone was taking me or my wife, this was scary!  In a foreign country with much reported corruption, violence and many other frightening stories, we were freaked out!  So much so that I used all of my pre-purchased cellular minutes on the phone trying to track down someone from the Canadian Consulate!  Nothing happened other than us freaking out but the clinic’s supposed managing director emailed me this response: “No one could just take you away from us. Lol!”  I see nothing to laugh out loud about!
 After my second day at the hospital I decided to put everything aside and accept the things I couldn’t change and suck it up to have my focus firmly on the treatment.  As my wife described in her comments, things were not the fault of the Indian staff, they were just doing the best they knew how to do and we were very cooperative and friendly with staff.  There were occasions when our demeanour did change like the police fiasco.  Another example if we go back to the video they posted where I am sitting on the edge of my bed standing up to describe how if I can’t lift my leg…then I can’t lift it.  I think it was my second day at physio and they were telling me to lift my foot up to about a 12” step.  Well my leg does not listen to what my brain tells it to do, I couldn’t lift my foot!  The lead physio said that I wasn’t trying, “don’t think about it, just do it” unfortunately that’s not how MS works.  Again the staff knew nothing about multiple sclerosis!  So the lead physio told Malik that I wasn’t trying and I was being difficult!  People that know me understand that I do try; I push myself in the gym to do exercises and whatever I can, because I still can, so I do!  These remarks were very upsetting to my wife, because of coarse she knows how hard I try.  Where is the video of her lambasting the physiotherapist and the doctor, demanding that her husband be treated with respect and not be made fun of?
The next statement is almost comical: “Several of the CCSVI staff commented that both Mr. and Mrs. Chuckry were filled with unrestrained joy over Mr. Chuckry’s neurological improvements. As well, they made the staff feel very good about the work they were doing because everyone could see definitive progress, as documented in the video. The record shows that he met with clinical staff including a physiotherapist and myself several times, to update him on his progress and to plan his post-therapy continuing protocol, including physiotherapy”.  Please… unrestrained joy, I’m a pretty even-keeled guy, that description does not meet my personality even at the happiest of times!  We did not see and I did not experience such neurological improvement.  While there I definitely did see some improvements, my uncontrolled leg spasms had decreased greatly and to tell the truth they are greatly diminished to this day.  With this new attack however, the spasms have just been replaced with other neurological problems with my legs.  I don’t see any definitive progress as documented in the video (keep trying guys).  Of coarse I met with the physiotherapist and Dr. Malik, almost daily until I had to stop physio.  They weren’t there to update my progress; they were there as their job and to monitor me.  There was never any plan for post-therapy continuing protocol, including physiotherapy, I was given a photocopied 12 page booklet on stretches that my physiotherapist at home told me he didn’t need, it was all completely standard stuff!
As far as I can remember I was interviewed and videotaped at the beginning and the end of my hospital stay, I was not “filmed and interviewed throughout the treatment for later analysis of his progress related to movement, increased motor control, range of motion, and other neurologic changes”.  Where is this video?
I was VERY sick after my last stem cell treatment, SEVERE headache; I didn’t even have anything to eat the last 2 days.  I did have a bladder stone, perhaps that contributed but its not my first and I’ve not had any problems like I had in the hospital because of a bladder stone.  I passed the stone the same night of my final stem cell treatment but continued to experience severe headaches for two days following.  I was given plenty of IV fluids to keep me hydrated and what Malik called Lasix which would make me urinate to help pass the stone.  Thank God I had my wife with me being a former RN, she took care of me.  The hospital didn’t do anything other than give me the IV and medication…nothing special!
When the day finally arrived that we could go home, we were elated!  Maybe that’s where they got unrestrained joy from.  Throughout my entire stay I was positive and happy, what else was I going to do?  That’s just how I am, be thankful for what I have and stay positive.  I hate whiners and that’s the last thing I would do.  To make the claim “Even the other patients at the time will confirm a different experience” is also false.  There was only one other patient and I’m positive I know what she will say about the experience and it won’t favour the clinic.
Upon leaving the clinic I was very hopeful that I would experience positive results from the stem cell treatment and was prepared to work my butt off to make that happen.  I would have been more than happy to show off any improvements, become the “Poster Boy” once I actually achieved improvements.  Unfortunately I didn’t experience the improvements I was hoping for.  Where things changed is when I returned home to experience an MS attack and had to deal with the incompetence of Doug Broeska to give me information on what effect prednisone would have on the stem cells, not avoid the issue for 10 days!  I will keep my hope alive that the stem cells are in me and waiting to take effect.  Once I get over this attack I will be back at the gym doing my exercises and working with my physiotherapist and do anything I can to keep the hope alive.  We’ll see what happens but I will post my status, and with honesty. 
I could go on with many experiences that fit the bill for “filthy” or “like a prison” but I think you can get the idea.  Why would he say that my claim to have “no access to a wheelchair” is frankly not credible at all?  It’s just the plain truth; I was honestly stuck in my room for 2 weeks.  We did have television with 3 or maybe 4 English channels to occupy some time but no lap top as promised.  Just because we didn’t complain about things doesn’t mean they didn’t happen.  We had one dietician who was easy to communicate with and I think she really did try to be accommodating, but trying and succeeding are two different things.  I am including some pictures of a typical meal, so typical that very little changed meal to meal.  The pratha, (Indian bread) was always pretty good but nothing else had that consistency.  There was very little variety; every meal came with the same red carrot slices (yeah the carrots were red) and cucumber.  The soupy looking dahl was NOT good, I enjoy this dish at home but this lentil dish became sickening after being served day after day!  Getting proper protein was a challenge, of coarse no beef and look at the “yummy” chicken!  There wasn’t much point in complaining about things, no one seemed to understand and it became easier to just accept things rather than try to explain, very frustrating.  On the video you see my wife talking about the food which was actually not too bad the first two days but she would not criticize or make a big fuss about anything, it’s just not in her nature or upbringing. If you observe my facial expressions while she is talking about the food you can see that I have a different take on the food experience!
In the end I must remain hopeful about the stem cells and the potential for improvements.  This is a wait and see game now but there’s no point in getting discouraged believing that nothing will happen.  I do believe the use of stem cell transplants will become a critical treatment for MS and many other diseases.  It just frustrates and angers me that we don’t do the research and treatment in Canada.  It just doesn’t make sense other than the powerful forces that lobby against it, we as a national group of advocates should have more influence than the profits of pharmaceutical giants.  Isn’t that why we have government, isn’t it supposed to be by the people and for the people?  Hopefully we can change things; it just takes a lot of time and bitching!
It is so disheartening to see a video that has been put together with the sole purpose of misrepresenting my wife and I.  Well more like maddening, unfair, unscrupulous, the list can go on for a long while.  Its just not right but then again there isn’t much that is right about CCSVI Clinic and the researcher’s deceptive and misleading tactics.  To the people that created this night mare and all the lies, may God be your judge!  Wake up and stop the crap, like I said, I’m done and now just want to live without anymore stress and focus on getting better.

Friday, May 31, 2013


Well its just gone over 6 weeks since I’ve returned from India, I feel bad that I haven’t posted a follow up blog but I just wasn’t sure how I wanted to approach it.  Apart from our actual trip, there have been many things happening in the last 6 weeks to write about so it’s difficult to know where to start.  I suppose I should begin with my treatment experience from India but I would like to add a small disclaimer before I begin.  The following account is from my individual experience and is not intended to disparage the treatment at all or the results that have been reported thus far.  Having said that I must document the “HELL” that Lorelei and I went through if only to provide full disclosure of the facilities and treatment from Inamdar hospital.  I believe people deserve a true understanding of what to expect from the treatment, the hospital, facilities and claims made from CCSVI Clinic.   
Our trip began on a very difficult path, we flew 9 hours to Amsterdam and had no down time before catching our next 9 hour flight to India.  This totalled over 20 hours of continuous travel and then we had over a three hour drive from Mumbai to Pune.  It was actually good that we arrived after midnight because we basically missed the traffic that would have otherwise turned the 3 hour drive into a 6 hour drive!  So we finally arrived at the hospital sometime after 3:30 am, completely exhausted and looking forward to some real sleep on an actual bed.  Our first impression was one of disgust, we were taken to our room on the 6th floor only to find it filthy as though they hadn’t known about or prepared for our arrival at all!  I however was not prepared to deal with the situation until the following day after we had gotten some rest.  I at least had a real bed, not comfortable or clean but it was a bed, Lorelei was not as lucky as she only had a thin foam mattress, 2” at the most placed on a plywood bed frame.  At the time it didn’t matter, sleep was all we cared about.  I was shocked when hospital staff began coming into our room within only hours…I thought to myself seriously, get the hell out!!  After our long journey we were given less than 3 hours of uninterrupted rest and this is how our hospital experience began and to be honest it never really got much better.  My expectations that were based on pictures and claims from the CCSVI website were quickly squashed and replaced by the reality that we were completely mislead.  This hospital was nothing like the pictures or description provided on the website or anything remotely similar to descriptions made by previous patients.  There was no clinic to speak of, we had a room and that was it.  There were no other patients except one woman whose room was on the 9th floor.  Thank God that we had someone else undergoing the treatment at the same time even though we were completely isolated from each other.  Meeting Lesley and her caregiver Kim literally kept us from going crazy but the only time we had to communicate was during cross over times for our physiotherapy and beyond that the only time we saw each other to visit and offer each other support was when Kim would bring Lesley down to our room.  I wasn’t permitted to bring my scooter (which I understand their reasoning why) so I had no mobility and wasn’t even given access to a wheelchair.  Therefore the only time we had to visit was when Kim brought Lesley down to the 6th floor because Lesley fortunately had her own wheelchair.  We were completely isolated and the concept of a clinic did not exist!  The only accurate comparison to how we were forced to live would be going to prison, and I’m not kidding or exaggerating.  This is not at all what we were lead to believe as it was clearly stated on their website that patients and their companions are admitted to the clinic’s own wing within the hospital for the patient’s specific medical therapy, this is how I envisioned the “clinic” setting to be.  There were many other statements from the website that were completely false.  For example: “The multi-cuisine dining facility serves a wide variety of north Indian, south Indian apart from traditional Indian meals and snacks. For an occupant of a deluxe room, the elegant interiors and the view of an adjacent terrace garden are designed to make his or her stay not just comfortable but also pleasurable.”  Completely false statements, our stay was the furthest thing from comfortable and pleasurable as you can get!  I can also assure you that I would have rather eaten food from any North American prison than the hospital food we were served.  Another lie from the website states “All meals are catered on the ward; snacks are available on the ward 24/7. All cuisine is North American, unless the group decides they would like to sample some Indian cuisine”.  Requests that we made for North American food came to us inedible most of the time.  We ingested the food for sustenance only, it was terrible!
Another false statement “The hospital itself is a multi-specialty facility that is centrally located in the city and outfitted with state-of-the-art infrastructure complete with an eminent panel of multi-specialty physicians. International Services for a global patient population ensure that distance and language are not obstacles to receiving world-class care”.  For starters hardly any staff spoke English, let alone fluently, communication was a huge barrier!  Another huge barrier to understanding was the fact that none of the staff, that I met, knew what multiple sclerosis is!  Nobody really knew why we were there, what the effects of the disease are or the limitations that MS places on our bodies.  It became extremely annoying being asked everyday what MS is and trying to get staff to understand the effects it has on our bodies.
I honestly didn’t see one thing that I could class as “state-of-the-art”.  On the contrary everything I saw and experienced was completely antiquated from the blood pressure monitors to the physiotherapy equipment.  Not to say that things were not functional but far from state-of-the-art!  The only doctor that I can ever recall introducing themselves to me and their role or specialty was Dr. Malik.  Thank God again for this man; he was the only aspect of our entire experience that I can say was excellent.  He is an interventional radiologist but essentially seemed to run the entire program, without him we would have completely lost it!  As for a team of other specialists…who knows who or where they were.  The medical team tab from the website lists only two doctors and is listed as “Archive for Medical Team” whatever that means.  Dr. Alurkur is listed as an Interventional Neuro-Radiologist and he was named in my angioplasty report as the doctor who performed the venoplasty however it was signed by someone else for: Dr. Alurkur.  I was never introduced to him or any other doctor other than Dr. Malik. 
I can’t really understand how they can find any validity to their clinical results, everything is subjective.  I was never evaluated by a neurologist, or anyone for that matter.  They have no base line parameters established so I’m not sure how they can evaluate outcomes.  The use of EDSS scores is one comparative evaluation that is used but again no one evaluated me especially nobody with the proper credentials of a neurologist.  All they had to go on is what I told them my EDSS score was and I was not seen by any doctor who could clinically confirm my score.  This brings into question the follow up scores that are being reported, who are the doctors assessing EDSS scores for post procedure reporting?  This rating scale is also quite subjective and is known to not be a precise measurement of ones entire disability and is often criticized for being insensitive to clinical change and consistency between evaluators.  There are several other methods used to quantify various aspects of disability however I was not evaluated for anything!  The use of MRI scans is also used to evaluate disease status but does not represent a clear indication of disability but does provide a clear and accurate measurement of disease activity.  I don’t understand why an MRI is not taken before the start of treatment and followed up by another 3 to 6 months post procedure.  It has been stated and inferred that the treatment “turns off” the disease but I can’t see any validity to such a statement without proper evaluation of MRI data. 
This is only a very brief account of some of the issues we faced at Inamdar hospital, there are SO MANY MORE but I don’t want this blog to turn into a book!  The so called “clinic” was not the only problem or misrepresentation we encountered, there are many others!  Again I expected based on the website consultation with surgeons upon returning home in post-period.  I knew this wasn’t going to happen based on the fact that I never met or spoke to any surgeons while at the clinic!  I was also promised “Follow-up web-based software for all patients to answer surveys at intervals, upload ancillary medical information, ask questions of any of the specialists involved in your care, and a chat feature to communicate with any other patients of CCSVI Clinic to compare notes and for support”.  I’m told this is coming but patients have been told this for well over a year, starting with the first patients to enter the program yet nothing has happened.
I suspect that when they moved the program from Noble Hospital to Inamdar things fell apart.  I honestly don’t trust their explanations for having to move which is a problem for me as one of the clinics basic claims is to operate the program under a policy of complete transparency.  I can tell you that very little of their operation is run with complete transparency.  We know that Regentek is the lead investigator for the study but this is apparently where their role ends.  I have huge questions regarding the involvement of the many other parties involved with the program like the role of the hospital, who runs CCSVI Clinic, are there any conflicts of interest involved just to name a few.  This is a very convoluted organisation and I believe it has been purposely set up this way.  As an example, taken directly from the CCSVI Clinic website is a disclaimer which states: “CCSVI Clinic is in the business of facilitating travel and hospitality only. Any and all medical services are provided by medical professionals who are not in the employ of CCSVI Clinic Inc. and CCSVI Clinic does not recommend, endorse or provide any specific test, analysis, products, or procedures of a medical nature”.  Where is the transparency in that, just who is responsible for the treatments, the patients, following proper protocol etc?  This is just not right and trust me, this is only the beginning.  I have examined the guide lines and requirements for the practice of cell based medicine as outlined by the ICMS (International Cellular Medicine Society) and I take no delight in stating my opinion that the CCSVI Clinic violates and or is in non-conformance with many of these guidelines. 
If I were to go through all or even half of our experiences in India, this blog would turn into a book.  There are many things yet to discuss that I will make the subject of future blogs but I had one main purpose for this blog and that is to inform any new or prospective patients of the reality they can expect from Inamdar hospital.  I would not recommend anyone go to this facility under its current operating parameters.  The experience of my wife and I was a living hell and I would hate to see anyone else pay such a large amount of money and be mislead by the outrageous misinterpretation of the program and facilities.  Understanding full well the feelings of desperation and hope, I can’t blame anyone for still wanting to proceed but at least now you have and informed and realistic view of what to expect.  As I stated at the beginning, my intent here is not to disparage the program, its vast potential or the amazing results that have been reported but everyone deserves the truth.  I think the clinic was on the right track operating from Noble hospital but things have fallen apart since moving to Inamdar.  There is a substantial amount of work to be completed before this clinic is even close to being acceptable in my opinion.  Perhaps they have even started to correct some of the problems but I guarantee there is a long way to go.  What my wife and I went through (to be guinea pigs) caused a lot of stress to my mind and my body!  We are all aware that stress is a very bad condition for MS and I am thoroughly disgusted that I was subjected to this kind of treatment.  Through it all we decided to keep the negative experience hidden from our family and friends, we figured there was no point in spreading the worry back home.  We knew we were still receiving prayer and had faith that our own specific prayers would bring us home safe.
This blog is already so long but there is still so much that needs to be said but I’ll end with an even more concerning piece of news.  Upon my return home I was already scheduled for an MRI, this took place exactly 23 days after my last stem cell transplant.  I didn’t receive the results until 17 days later when I had an appointment with my neurologist but I knew before then that something wasn’t right.  Approximately two weeks before this I began to notice new symptoms developing, the left side of my body was going numb and my balance was deteriorating.  I had been warned that this type of response is common when new neural pathways are opening so I wasn’t too concerned and kept up with physio therapy and exercising.  By the time my appointment rolled around the symptoms had escalated, these were new symptoms and I was sure that I was having an attack!  How could this be possible, the stem cells are supposed to “turn the disease off”!  Well it didn’t work for me; my MRI showed a new enhancing T2 hypereintense lesion and my neuro knew that I was in the midst of an attack.  He offered me a prescription for high dose prednisone but I declined in favour of just monitoring things for a while as my symptoms were not really problematic at the moment.  I reported my suspicions of an attack to the lead researcher from Regenetek on May 14th and again on May 17th with MRI evidence of an attack but did not get a response until May 19th.  The response I received was one of scepticism reiterating that this was a normal response and virtually every patient thus far has had similar experiences.  I replied saying that I was convinced that I was having an attack, after having so many attacks over the last 17 years (too many to count) I knew exactly what was happening in my body.  Things started to worsen over the weekend of the 18th and 19th, the numbness was spreading to my right side, my legs now felt as if they weighed 100 pounds each making walking EXTREMELY DIFFICULT and I couldn’t feel the left side of my ass!  Well I could feel it but it felt as if my left butt cheek and foot belonged to someone else.  I was extremely concerned with the rapid progression of my symptoms over the last two days and was now desperately wishing I had taken the prednisone prescription.  I’d been in this position before and had the disease flatten me to the point of crawling; I needed to know from the lead researcher what would happen to the stem cells if I was on a high dose course of prednisone!  I didn’t hear back from him until the 21st, the day I had mentioned in my email that I would be filling the prednisone prescription unless he could provide me with some very compelling reasons why I shouldn’t.  Fortunately the rapid progression of my symptoms subsided by the 21st and I had to make the call on my own to not start the prednisone.  I did send another email stating that I needed to speak with the lead researcher very soon and got a reply that he would call me on the 22nd.  Well that call never happened until the 23rd at which time I was informed that the prednisone would essentially damage the stem cells to the point of being non functional.  I had been waiting for this information since my first contact on May 14th, I got the answer 10 days later, unacceptable and bordering on incompetence if not negligence.  He knew that I would lean towards the drug if my condition worsened yet he neglected to inform me of the negative consequences of taking the prednisone.  So I never did use prednisone but this was my decision based on instinct and what little information I could garner from Google.  I must still be positive and believe that the stem cells will kick in once this attack has subsided a little.  I am very surprised that the stem cells haven’t had a positive reaction because they are meant to be attracted to areas of inflammation and trauma in the body.  I don’t want to wreck the chance that the stem cells are still alive and waiting to work but I do wish I had the prednisone.  I have always responded well and at the moment I need something in the absence of any action from the stem cells.  My condition has become much worse over the last several days, it’s not good but at this point I think I’ll have to suck it up and just deal with it!  I just have to pray that things won’t progress to the point of not walking at all.  I feel so tired and can’t do anything that requires me to exert any energy.  My balance has deteriorated big time and I seem to be very clumsy, to the point that I have difficulty using cutlery.  Overall I’m just not a very happy camper at the moment.  I won’t let my faith in the treatment and the stem cells fade away, my faith in God and his plan is more powerful than anything that is happening. 
I do apologize for the length of this blog but there is so much to relate and so much more to follow.  I have topics that can keep this line of discussion going for many more blogs and there will be many to follow.  Again the intent behind this blog is not to create doubt and worry in the minds of patients or their families; the objective is to relay truth about my experience and to prospective patients.  We all deserve to know the truth and not be mislead into such an important decision based on inaccurate information.
My story will continue so until next time,


Monday, March 25, 2013


It’s hard to believe that in less than 24 hours my beautiful wife and I will be on a plane heading for India, it seems I’ve been waiting for this moment for an awfully long time!  I’m very happy that the time has arrived but not very happy about the time it will take to get to our destination.  Our flight time to Amsterdam is over 8 hours; we have less than two hours before our next flight to Mumbai which will take over 9 hours!  Once we land the clinic will be there to drive us to Pune which I’ve recently been told is over a 5 hour drive which was completely unexpected!  We leave on March 26th and don’t arrive at the hospital until March 28th, that’s like two days of travel!  Not including time changes, our journey will take well over 24 hours of continuous travel, that is going to be extremely hard on me but no one said this was going to be easy.
I know that my experience in India will be very different than the stem cell treatment I had in China.  The stem cell transplants were spread out over 6 separate procedures and I was in the hospital for a month.  The program in India is condensed into 2 procedures and only 2 weeks in the hospital.  I will have the “Liberation Procedure” first and stem cells injected into my jugular veins at the same time.  The next procedure is the actual stem cell transplant which is done in one operation rather than 6.  In China I was given an average of 15 million stem cells each time totalling less than 100 million cells.  This time I will receive 200 million stem cells but all in one shot!  This is the maximum amount allowable and they will all be cultured from my own body.  A vastly different approach than what I experienced in China but there will be some similarities for sure.  Some of the possible side effects that have been explained to me are the same but possibly intensified.  For example, in China I had to lay immobilized flat on my back for 6 hours after each transplant, that was very hard on me!  Well I’m in for a shock because I must be immobilized for 48 hours after the transplant in India!  I have to be lying down with my feet above my head for the entire time other than getting up for bathroom breaks and eating.  I'm not too sure how this is going to work out but I’m definitely not looking forward to it!  In China I had free time between treatments that allowed me to leave the hospital and go touring around, shopping etc.  Not this time, I’m told that my days will be full the entire time but if I feel up to it the staff will take me out during the final days for some shopping and sight seeing.  Lorelei will likely have time to experience more but in the end we are there for one purpose, to undergo medical treatment and not vacation.
Having been explained the possible side effects I know that I will have some pretty tough days.  Although I got through most of my transplants in China without incident, there were some extremely uncomfortable and painful post reactions.  The side effects range in duration and severity but I’m told the most critical can be post-dural-puncture headaches.  I experienced this in China and looking back at my blog from the time it was extreme pain, the only time I could recall in my adult life crying from physical pain.  I just pray that things don’t go down that road in India! 
The headaches can be very brutal as the central nervous system (CNS) adjusts to pressure changes after cerebrospinal fluid is momentarily drained by lumbar puncture.   200 million stem cells are then injected into the spinal canal and the cerebrospinal fluid is then returned and pushes the stem cells up the spinal canal and into the brain.  This creates great changes in the hydrostatic pressure of the CNS but it is impossible to know how severe the headaches will be and this can occur several hours or even several days after the lumbar puncture.  At least I’ll have my honey there to console me if problems do start!
Other noted side effects will vary depending on the level of ones disability.  For example, patients who are paraplegic may experience the return of rigid and spastic muscle tissue from a contractured to a flaccid state which is a normal response to the neural pathways making reconnections.  One patient that I spoke with experienced this, he was used to his legs being very spastic and his knees locking so he could stand up.  He was shocked post procedure when he tried standing and like a limp noodle he collapsed to the floor!  I’m glad that I have stayed active exercising my muscles to avoid muscle atrophy so hopefully this transitional phase will be easier on me.  It can be difficult to distinguish between side effects from the treatment and what some sceptics see as disease progression.  So far in every case patients have reported that this spasticity disappears once they return home.  Some patients have reported being very tired and feel they have regressed sometimes up to a month after returning home.  However it is now understood that what some patients see as regression is actually the spasticity relenting as the neural pathways are being reconfigured to the brain.  If certain muscles have not been used in a very long time they will need to develop muscle tone again and be able to handle the new loads as they are now available to the nervous system again.  Some patients report being very tired as this goes on but it is just the body needing rest as it goes through a new nerve growth phase. 
It is difficult if not impossible to know how each individual will react post procedure and results will vary.  The normal period of noticeable recovery begins between 60 and 120 days post procedure.  No one really knows what to expect exactly but I’ve been told to accept the fact that I will not experience straight-line recovery.  The actual fact is that no one knows how I’ll react and recover, no one but God that is.  Time will tell and I must be patient, stem cells have shown to have continued improvement for over a year.  Again no one really knows but the cells are not like batteries, they just don’t fade away and die.  It will take a lot of work on my part to reach the full potential of my recovery but of coarse I’m up for that challenge!  I’ve been told that physical therapy is key to ongoing improvement, for me that means exercising my body after I recover to retrain my lost muscle and brain connections. 
I’m not sure if I’ll be doing any blogs while I’m away but stay tuned for future posts and to follow my progress.  In the mean time I would like to thank everyone that has been and will be praying for me, it means so much to me.

Wednesday, February 13, 2013


I’m in shock that this has happened to me again, just five days before I’m scheduled to leave for India I have been informed that my procedure must be postponed for 45 days!!!  Yes that’s right I’m not going for treatment as planned, totally bummed!  The Indian government’s National Accreditation Board for Hospitals and Healthcare Providers has set policies and procedural guidelines for Indian hospitals treating international patients and Noble Hospital was not accredited to conduct specific treatments including the Combination Therapy protocol for Multiple Sclerosis.  The CCSVI Clinic’s new facility provider Inamdar Hospital was approved for the clinic’s protocol, but is not yet ready to receive patients.  What a huge hassle and disappointment, just like in 2010 when my “Liberation procedure” was cancelled shortly before I was scheduled to leave because the New York hospital unexpectedly shut down Dr. Sclafani from performing any CCSVI procedures.  I am assured that my rescheduled date will be at the top of the list and that I will not be responsible for any additional costs. 
The medical director of the Indian clinic made this statement in his letter to me, “We want you to have every chance at a successful treatment and removing the regulatory obstacles just goes with the territory in any healthcare setting, even in Canada or the US. As you know, even in India, there is opposition to our therapies by many powerful forces led by the drug companies. Navigating the roadblocks that they have put in our path over the last three years has not been easy and this is just another example.” 
Yeah this crap even happens in foreign countries even though the positive outcomes continue to be reported.   Of the 16 patients treated between March and November of 2012 under the clinics new protocol, overall patients improved by a total of 47% according to an aggregate of 3 scales used over an average period of 155 days post therapy.  Average EDSS scores dropped from 6.0 to 3.5 and there have been no adverse events reported since the beginning of the study period.  Therapy protocols have now been developed for several acute clinical diseases including rheumatoid arthritis, ALS, Parkinson’s disease and retinitis pigmentosa.  Over 50 cases of diagnosed diseases were treated over the same period at CCSVI Clinic but they can’t be included in the aggregate of statistics for MS.
Just as with opposition to the new treatments (Liberation Procedure) pioneered by Dr. Zamboni,  powerful forces have come together in opposition to autologous stem cell therapies.  There has been a vast over exaggeration of the hypothetical risks that have little to do with how therapy is actually practiced.  The media has been silent for the most part reporting on these issues other than contributing to campaigns of misinformation and disinformation which is a complete disservice to patients suffering from numerous neurological disorders.
The FDA in the US has recently flexed its regulatory muscle by regulating therapies involving a patients own stem cells and shutting down biotech companies engaged in therapeutic stem cell treatments based on a recent decision by the US District Court.  The FDA calls the process from extraction to reinfusion of autologous stem cells “manufacturing, holding for sale and distribution of an unapproved biological drug product”.  GIVE ME A BREAK, they are calling and regulating a persons own stem cells a drug!  The FDA recently shut down a stem cell clinic in Houston citing the company was illegally marketing an unlicensed drug and targeting similar companies engaged in researching and offering therapeutic regenerative therapies.
This can be viewed as the FDA working with major pharmaceutical companies to restrict and create regulatory barriers for US based stem cell therapies.  Now combine this with the FDA’s own admission to fast track drug approvals and admitting to “expedite the approval of many of these products by streamlining clinical trial requirements to permit smaller, shorter or fewer studies wherever possible”.  These actions not only help the major drug companies financially by easing the costs of clinical trials but also help them licence drugs that directly compete with interventional stem cell treatments.  This isn’t just going on in the US, Canada and Europe are similarly under the negative influence of the media and regulatory authorities being driven by commercial interests attempting to maintain the status quo to the benefit of major pharmaceutical companies.
This is a travesty that we are allowing to take place right under our noses.  The financial interests of a few mega billion dollar corporations take precedence over the medical well being of millions of patients suffering the devastating effects of chronic neurological diseases like MS, Alzheimer’s, Parkinson’s and ALS.  Many of us suffering from these conditions are forced to live without hope, as our conditions worsen we don’t have the time to wait for a new drug, we need alternatives now!  I can’t think of a more unethical situation that we are forced to live with.  This is why we need companies like the CCSVI Clinic and Regenetek to come up with and fight for alternative treatments that just might help people struggling like me.
All that being said, I hold onto my enthusiasm and hope for the therapy in India.  Everything still rests on my faith in God, I don’t understand why He allows hiccups like this to happen but I must rely on my belief that it’s all part of His master plan.  I received an email with the following encouragement (thanks mom): 
For I know the plans I have for you says the Lord.  They are plans for good and not disaster to give you a future and hope.  Jeremiah 29-11
This is the attitude I must live by and is the ultimate source of my HOPE!  Perhaps my trip was postponed by divine intervention, maybe to prevent something horrible from happening.  I don’t know but I do believe there is a reason for everything that happens and so I must not let this become a source of discouragement.
My last fundraiser did not turn out as well as I had hoped but I can’t expect a lot when everything was organized in just over a week!  I knew there was very little time to hold another event but I said what the heck…why not?  In the end we raised another $1,525 which I’m totally happy with; it’s more money than I had the day before!  This brings the total raised to $21,750 but I’m still over $8,000 short from my goal of $30,000 so perhaps this is a reason for the delay.  Now that I have to wait for another 45 days I will have the proper amount of time to plan another fundraiser.  There just wasn’t enough time for my last fundraiser to get the word out to have more people show up.  It was still a good evening and I must give a shout out to my buddy Markus from Big Rock for organizing the donation of a keg and to Brett and Spider, owners of the Blind Monk, they are awesome guys!  I’m not sure where or what my next event will be but I will start planning now and recruiting more help.  It’s very difficult to organize a fundraiser with very limited help given my energy levels and physical impediments so I must start the process now.  Stay tuned for more details…
There are plenty of other issues going on with my health and otherwise but I think I’ve rambled on long enough for this blog so I’ll save it for my next one.
God Bless,