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 http://hopeforlee.blogspot.ca
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.