Wednesday, December 23, 2015

TRANSITIONS SUCK!



Well the year is quickly coming to an end and I’ve only posted one blog which was also the case in 2014 when I said that I wanted to start writing again! I suppose there’s many reasons (excuses) some valid and some not, but the bottom line is that I can’t really call myself a blogger anymore. Fortunately this is something that I can change so I’m squeezing in one more blog for 2015.

Transition is defined as: passage from one state, stage, subject, or place to another. I suppose any transition can be viewed as good or bad depending on one’s viewpoint and circumstance. In my experience with multiple sclerosis every transition has been bad hence the title of this blog. I was diagnosed with MS in 1996 so I have faced many transitions during that time. The disease started off with the typical relapsing remitting diagnosis however, my rate of relapse was not typical. My relapses were hitting me back to back and hard for the first two years each time leaving a deficit in at least one functional system, which led to my first transition of no longer being able to run or jump. Yup, that sucked but it was just the beginning.
As time progressed, my walking difficulties became not only obvious but very onerous as well ushering in the next transition of having to use a cane. I guess that one wasn’t so bad because it did help me to walk better and let the world know that I was dealing with a disability and not just drunk! This transition resulted in a drastic change to my work responsibilities since I was no longer able to carry out my work functions on construction sites. Again, not the end of the world, just meant that I spent more time in my shop and office. The next transition was one of the most difficult of my life, having to shut down my business. I can’t blame multiple sclerosis as the reason for having to close down my business but it was a major contributing factor. Up until now all I had known was being a boss, looking for a job and transitioning to an employee rather than employer was extremely tough but not as tough as having MS. By this point in time my physical challenges were significant and interfering with the quality of my life. My walking distance was limited to under 500 feet preventing me from doing many things with my family. Something I had avoided consideration of since day one of my diagnosis was having to use a wheelchair, but that time was now painfully upon me. In the end I got a scooter and it wasn’t the end of the world, but an extremely difficult transition to accept and you guessed it… It sucked! As time went on my physical challenges became increasingly more difficult and disease progression was obvious. As is unfortunately too often the case, the weight and impact of the disease and uncertainty over the future became too heavy for my spouse. Now I had to deal with the transition of divorce and losing my children, one of the most difficult yet.
Life does go on though and we must try and move forward, as hard as that may seem. In the end I had to find a roommate in order to afford housing but that was one transition that worked out well as I found a new best friend. By this point in time my disabilities had become very progressed causing great difficulties for me but things were about to get worse. I had pretty much accepted the physical challenges that come with this disease but I was very reluctant to accept the numerous other possible problems that can develop namely cognitive difficulties. When issues started to develop in my workplace, I was the last person that wanted to admit having difficulties with my short-term memory and cognitive functions. In the end this was an unavoidable consequence, by lunch my energy level had been zapped to zero and my work performance did suffer. It was at this point that my doctor recommended that I stop working, if I had disability coverage why would I continue beating myself up every day trying to work? I took his advice and as of October 2007, my working days were over. I’d had a job since I was 15 years old and owned my own company for much of that time transforming myself into a workaholic. I wasn’t sure how I would handle not working but I knew for a fact that this TRANSITION WOULD SUCK! I knew I needed to find some new interests which is how I found writing.
As the next several years passed by, life didn’t suck it had just changed and I had to learn to cope with those changes. The disease continued to progress, slowly mind you, but never stopping. I however could not let that stop me, my life was still filled with blessings. The best blessing of all was falling in love again and finding my new loving and supportive wife. Finally a good transition! We moved into a new house that I could easily get around in, I finally had my children back and two new stepsons to boot! This was my new life and I had adapted to it however, MS didn’t care and didn’t stop. The progression continued and within three years I was no longer able to walk, even with a cane. I was not even able to navigate my way up a three rise staircase. Another transition and yet again, IT SUCKED!
Not to be deterred, I was able to have a lift installed and my indoor isolation had been solved. I now had some independence back in my life! Even though my legs weren’t interested in walking I could still move my right foot from the gas to the break allowing me to continue driving. In the span of one year between 2013 and 2014 I suffered three MS attacks, each one preventing me from driving. Eventually my legs recovered enough from each relapse to go back to driving but things were getting pretty sketchy after my third attack. It was getting to the point that at times I would need to use my hand to help manoeuvre my leg and foot between the gas and brake pedals. It was at this point that I had to pull myself off the road, my situation just wasn’t safe anymore. So now I couldn’t drive and you guessed it… THAT SUCKED! Again, I was forced to overcome an impediment to my independence. I was never really sure how hand controls worked in a vehicle but I was under the impression that they would be very expensive. It didn’t matter, at this point I had to look into it and to my surprise it was a very simple set up. I was able to have hand controls installed in my van for $1000 and I was yet again in the driver seat.
As I continued to knock down barriers to my independence this damn disease continued to knock me down! It was great that I could drive again, but that didn’t put the brakes on my disease progression. I was still able to get myself out of the driver’s seat to the back of my van by shuffling around using the van as support. Pulling out my ramp and reaching in to back my scooter out was becoming a real chore. This whole process eventually became too difficult for me, I used to be the master of loading and unloading my scooter so it was completely disheartening to lose this ability as well. From this point onward it was my wife who had to become the master. I hate to admit it but I think she was actually more proficient at the process than I was! At any rate I was screwed again, did I now have to bring my wife with me to be able to go anywhere? Another sucky situation to try and overcome! I knew exactly how to solve the situation… a new van. The kind of van that has ramps built right in that would allow me to drive my scooter right into the van. I had looked at these vans at Shoppers Home Health where I bought and service my scooter, they were awesome but way out of reach! A new van was running $65,000 for a Dodge Caravan and up to $80,000 plus for the Honda or Toyota, a real pipedream at this point in time. I was informed that they do receive second-hand vans that might be affordable and within two weeks I got a phone call from the service manager that a van was available for only $16,000. By the time I was able to rearrange my finances the van had already sold but that turned out to be a good thing. Another van was scheduled to come in within the next couple of days that looked like an even better deal. This van was a 2006 Grand Caravan, one year older than my van which didn’t sound exciting however, the story got better. There were only 68,000 km on this van, the previous owner had spent the winters in Arizona so this van had never even seen snow! It was in awesome shape but would also cost me $4000 more than the other one. That part sucked because I was just able to squeeze enough money out of my finances to cover the cost of the first van, coming up with $20,000 was going to be a real challenge. At any rate I wasn’t going to let this one slip out of my fingers so I had to put the rest on my credit card, OUCH! That pain would dissipate quickly with the joy of gaining my freedom and independence once again.
My ultimate point is that multiple sclerosis does suck! The key is to not let negativity and self-pity take hold and that is sometimes very difficult to do. It still does affect me even though I think I hide it quite well my disposition at times can still be a little grumpy so I’m told. I can’t hide much from my wife; you know how that goes. It’s easy to become less motivated as I continue to lose more abilities and this has been the case for the last few years. I’ve basically fallen into a bit of a funk and I always advise to do whatever possible to stay away from this. I noticed my body getting weaker, my core and leg strength had deteriorated quite noticeably. I suppose this is to be expected when I’m just sitting on my ass all day, not doing any weight-bearing activity and turning my posture into that of a crippled old man. I realized that I was losing things that I really didn’t have to. I really was beginning to feel stronger over the last six months and realized it was time for me to take control of what I can. I needed to get reengaged with some type of exercise but I needed a different approach than just going to the gym and randomly choosing a machine to work out on and creating my own programs. I was looking for a more professional approach for evaluation and setting up a fitness program so I contacted the MS clinic and was enrolled in the CAR program (community accessible rehabilitation). This program provides access to many rehabilitation disciplines such as physiotherapists, occupational therapists, recreational therapists and much more. It basically provides the physical and mental supports to develop goal setting, more community interaction and involvement.
I have also been set up with SCI (spinal cord injury clinic) which is a fitness and wellness centre with state-of-the-art equipment and professional trainers. I’m setting up a program for improved cardiovascular fitness, increased muscle strength and improvement of bone density. One of the pieces of equipment I will be using is the FES bike (functional electrical stimulation cycle). This machine combines electrical stimulation and assistance from a motor to help people with spinal cord injury, or other neurological conditions peddle a stationary bike. Electrodes are placed on the skin to allow electrical stimulation to reach the muscles to achieve smooth and natural pedaling. In addition to the bike I will have an entire physical routine set up by fitness experts so I’m looking forward to working hard and achieving some improvements. I am also looking into a program operated by the University of Calgary which would allow for a very similar program as SCI and they also have the FES bike. I know that getting back into physical fitness will improve my energy and mood not to mention the increased community interaction and involvement that have been missing from my life.
As stated, I’ve always advised against a self defeatist behaviour and mindset. Maintaining a positive attitude is key to staying out of that vortex of self-pity and utter lack of motivation to do anything positive for yourself. I realized I needed to snap myself out of a negative mindset and regain my positive can-do attitude, both physically and mentally speaking. Now it’s a matter of following through on what I’ve started. That won’t be hard once I begin to see physical results from working out and feel the benefits of human interaction and involvement in something meaningful. Getting back to writing should also give me some new energy and stimulation. Now that I have the van there is no excuse to not get out and reengage socially with friends. Yes, some transitions really do suck but it’s how we choose to deal with change that determines how that change will affect us.  Time to get rid of excuses and as Nike says,” Just Do It!
LC

Friday, May 15, 2015

VINDICATION BUT NO JUSTICE


A year has gone by since my last blog, boy a year goes by fast! I suppose a lot has happened in the last year, but the focus of this blog won’t be on my personal health but rather on the debacle created by Doug Broeska. It all started in January of this year when the wheels began to fall off the story train of Dr. D and Regenetek. The credentials of Broeska began to come under scrutiny precipitating a review of his entire organization, and his past. This is when all of the lies started to surface such as his claim to a bogus PhD, as far as I know the man doesn’t even have an undergrad degree! This is only the tip of the iceberg that is made up of a mountain of lies, deceit, slander, and what I clearly classify as fraud. As the story progresses and more facts come out, we have the making of a good book or movie.
I had put the whole India experience behind me when all of my efforts to expose the truth behind this operation turned up nothing but false hope. I truly felt that what Regentek and Doug Broeska were doing was fraudulent and criminal. I filed a complaint with the RCMP and with Health Canada, but after weeks of no response or willingness to initiate an investigation, dejected and disappointed I decided to put it all behind me. I stayed clear of all the websites and Facebook pages for almost 8 months so that I could clear my head of all this crap and focus on my health. Then once the story started to surface about Doug’s bogus credentials I was dragged back into the fray of things by requests for interviews. Once I got my head back into the story and began talking with former patients I saw a light at the end of the tunnel.   All of Doug’s lies were being exposed, past patients were coming forward with truth, the story was being reported in the media and I was finally reassured that an investigation into the matter was underway. Everything about this story was initially documented in my original complaint to the RCMP and Health Canada, but unfortunately nobody was interested in listening to me at the time. It wasn’t until the aftermath of Regenetek and Doug’s demise that people came forward wishing they would have heeded my warning. I figured out Doug’s scam while I was still in India, it became obvious to me that there was no legitimate study being conducted. When I returned home to no follow-up and no willingness to accept the simple fact that the procedure did not work on me I knew something was wrong. Doug insisted on maintaining his claim that ALL patients had improved post procedure. I knew this was false because it had not worked on me and I knew of several other patients that had no improvement, all of which Doug was fully aware of. The issue is that nobody else was aware of this fact because if anyone claimed they saw no improvement or questioned the procedure in any way Doug would simply disqualify them from his so-called trial. It was completely clear to me at this point that there was no legitimate trial and the whole procedure was suspect in my mind.
After I wrote my first blog, “Nightmares From India” the skepticism of my claims and character attacks against my wife and me started to come fast and furious! The only motivation behind my blog was to express the truth of my experience and to explain what people could expect from the new hospital. Well, this blog created a shit storm that I could not have imagined. The truth that I expressed did not sit well with prospective future patients, Dr. D of course, Regenetek, Inamdar Hospital, and anyone else that was waiting patiently to see improvements from the procedure. I was attacked relentlessly and viciously for my opinion, but in my mind I was just doing the right thing. People deserve to know the truth before making such life-changing decisions even if they don’t want to hear it. Even after I had tried to put everything behind me I found out that that Doug and many of his supporters were continuing to bash my name even though it was many months after the fact! I’ve included some screenshots that someone sent me to show that I was still being attacked! I guess I was obviously still considered a threat by Doug and the CCSVI clinic that they found it necessary to continue bashing me. The things that were being said about me were not only ridiculous but extremely slanderous! The problem is who would I sue? I’m sure Doug has all his money hidden away and I don’t think it’s worth my while to pursue a liable suit against anyone. At any rate, at this point I can at least say that I am vindicated!
As time goes by and more information is uncovered, it is becoming clearer that no one knows exactly what their body underwent while undergoing stem cell procedures in India. I knew that after they switched hospitals from Noble to Inamdar that they had also switched labs. Questions that were never answered to me from the beginning such as which lab will cells be expanded in, what growth factors will be utilized and where is the documentation for all of this. It now appears that stem cells were not sent out to any lab as no documentation can be provided. I think they just took our money, gave us some bogus stem cell therapy and charged us an outrageous amount of money for a subpar physiotherapy routine. Yes, you heard that right, I believe I went to India for physiotherapy and a terrible culinary experience, a complete waste of time and money!
Now, to be completely fair there are some former patients that maintain they have seen benefits from the procedure. This is difficult for me to accept considering all the lies and deceit behind so many testimonials. Doug or Regenetek were actually paying some former patients to convince prospective patients of the legitimacy and effectiveness of the procedure. It’s disgusting how fake this whole damn thing is, and the fact that there are people continuing to go for treatment. Even though it appears that Doug has been ousted from the operations in India, I believe he still plays an integral role in the entire scheme of things. I believe he has an ownership stake in all of these operations and as such it would not be so easy to just remove him. Now that they have expanded to Trinidad and a new clinic much of the heat felt by the clinic in India has dissipated. By replacing Doug as principal investigator and changing the name of the operation to Genesis the people in India believe they have made a fresh start. They claim to be going back through the data and resurrecting things into a clinical trial. Anybody who listens to this is really desperate and grasping onto hope that doesn’t exist in reality. I don’t believe there is any more competency or legitimacy behind this operation, supposed new trial or their new clinic in Trinidad. This is something people will have to discover on their own without heeding the warnings against this operation and its questionable outcomes.
I have expressed my opinion that anything to do with this group, Doug Broeska, Regenetek, Genesis, Surjo Banerjee, Inamdar hospital or any new facility in Trinidad is bad news and a sham. There are still people who believe Surjo is innocent of any wrongdoing and was oblivious to the things going on with Regenetek and Broeska. Well, I believe Surjo was in it hand-in-hand with Broeska and just as culpable in this whole scam. I don’t believe he can be trusted nor anyone else involved with either of these clinics. After all of the lies have been exposed such as the bogus expansion of our own stem cells, false claims of improvement, everything about Broeska, the fact that there is no legitimate trial and blah blah blah the list goes on and nothing is believable! My ultimate point is that people need to do their homework on any treatment they are considering. I thought I had checked out the CCSVI clinic rather thoroughly and was somewhat na├»ve in listening to claims from previous patients. It turns out that no one I had contact with previous to going for the procedure really had any improvements. If anything, I believe physiotherapy that patients continued upon returning from India was responsible for much of what people consider improvements. Moving and engaging muscles that have been dormant for months and even years does make a big difference and can eventually lead to improvements.
I do believe there are legitimate treatments being provided to MS patients but most are still in the trial phase and not proven. I don’t know that I’m ready to trust any clinic or treatments that are not based in North America. There are many stem cell clinical trials underway that show great promise. The problem is that many of us suffering the debilitating effects of this disease don’t have the time to wait years for results and availability of treatments. This makes us vulnerable to dishonest scumbags like Broeska who prey on desperate people with the hope of improved health that are willing to spend their life’s savings on chasing this dream. It’s disgusting what Dr. D has done and others like Surjo continue to do. They do such a disservice to legitimate stem cell science and research not to mention what they do to the poor patients like myself who get sucked into the lies and deception of bogus treatments and unscrupulous operators like Regenetek and Genesis.
So why did I insert “No Justice” in the title of my blog? Because so far there has been no Justice and at times I fear there never will be. Even though I was promised by the RCMP that this is a very serious investigation and it will not just fade off from the radar, I have trouble believing this. Doug is a very slippery scumbag and I believe very capable of slithering his way out of all sorts of tight spots! I can’t say that the RCMP are not doing anything but it doesn’t seem like any action is taking place. I have very little faith that Health Canada will do anything if they even can. I think the only agency taking a serious interest in the situation is the Canada Revenue Agency, but of course the government will chase anyone down for money! The fact that Doug has already tried to start up the operation again speaks volumes. From what I understand it was the people in India, Surjo and his cohorts who temporarily stopped Doug from this venture. The website was only up for one or two days but I was able to get a peek at it. From what I gather Dr. D is attempting to set up a very similar if not the exact same scam. I’ve got to admit the guy has balls, he actually still refers to himself as Dr.  Bottom line is Doug needs to be arrested and thrown in jail! It’s very unlikely that anyone will see any money back or gain anything from a class-action lawsuit but these pipedreams still float around Facebook sites. At this point I would just be satisfied to see Doug locked up! I’d like to see these bullshit operations in India and now Trinidad closed down, but where there’s desperate sick people looking for hope and money to be made off of their desperation they will continue to operate, recruit, and deceive.
Please Lord, Let There Be Justice
LC