I am a Canadian citizen as were my great-grandparents on my motherâs side before me. I was diagnosed with ME/CFS and FM in 1991 by Specialists and had to stop working in 1994 on Long Term Disability from the Ontario Provincial Government. In 1994 I tested positive for Hep C, and was diagnosed with ME/CFS again. In 1996 I was referred to a psychiatrist for neurological problems inherent with ME/CFS which quickly got pushed aside. Over a 10 year period, psychiatric drugging started without 'informed consent" (not told what the side effects/adverse reactions of the drugs, not even told what many of the drugs were), for a neurological illness, at doses far beyond what I could handle, most I did not need, if nutrition and natural alternatives had been tried instead.
I belong to a subgroup of ME/CFS survivors that are antidepressant & drug dose sensitive or intolerant.
After years of serious adverse reactions, in 2003 I was misdiagnosed yet again, bipolar and in 3 months on bipolar medication repeatedly brain and body damaged for life, every muscle & ligament in my body repeatedly with no diagnosis. The only letter referring to it in some detail by Dr. Saul in late 2003 stating it was tardive dyskensia which it was not. Every muscle and ligament was severely shorted, stiff & weakened. I had acute Dystonia with seizures In March 2003 which is when the Dystonia convulsions started - on files as pseudo-seizures involving the trunk of my body, the first time I was abused in a hospital or by hospital staff which continued in every hospital after even with family trying to protect me. However, I was left on drugs doing more damage throughout 2003 & when I came off them in 2004 the extensive damage was worse. I had seizures and Dystonia convulsions daily, and the left side of my body paralyzed and remained weak.
Psychiatric was put on my medical files for serious adverse reactions to antidepressants & unethical practices by psychiatrists, and it was kept on to cover for the extensive and repetitive psychical damage done and the seizures I had for years coming off the drugs and the Dystonia. Also suicide attempts were added to my files, I have never tried to kill myself. There is alot of falsified information on the medical records that I have been able to obtain so far.
The College of Physicians and Surgeons says there is nothing I can do about my falsified medical records, misdiagnosis on them, and they can't force doctors to do anything and they protect doctors not you, especially if you do not have a lawyer behind you. To report the extensive abuse in the hospitals, 6 involved in Toronto, I need my medical records which are costly, and timely to report the extensive abuse both verbal and physical.
My main focus now is to get me the extensive medical and neurological care I need.
We have tried every level of government for help for years to no avail as well as other groups, Amnesty, Police, and Human Rights. We were told to get me out of the city, the province, the country. I worsened so much after coming off the remaining medications this proved impossible. I was cut off doctors and medications that were controlling the myocolonic Dystonia I wake up to every day, all medications and left badly brain and body damage in 2004. My mom or I have had to beg, literally for any medication since, usually left without any for long periods of time; presently I only have one, that doesnât stop the Dystonia convulsions or the spasmodic generalized Dystonia.
The damage is extensive and very complicated. Anyone else with Acquired Brain Injuries (A.B.I.) gets top extensive neurological diagnosis, treatment facility, care and extensive recovery programs at paces they can handle as well as support for family members. I have received none. They say there is no brain damage; all of my body is damaged extensively and repeatedly. Dyskenisa/dystonia does not show up on scans made yet the other damage will.
I greatly need the movement disorders stabilized and the spasmodic dystonia stablized and mitigated asap and diagnosed properly and on my medical records, my disability papers, and government forms. The malpractice & collusion affected every area of my life including supportive care wheelchair rent to geared housing, Assistive Devices Program, Disability Papers, many items I qualify for from my insurance; all falsified by doctors involved, leaving me without supports as well and thousands of dollars worth of support items I was entitled to back to 2003. My disability papers have to be signed each year; it is also my pension, life insurance, medical, dental.
from 2003 to 2008, 6 hospitals were involved, some repeatedly and 3 doctors in private practice. After the first brain damage I was abused verbally and/or physically in each one, my mom in 2. In total 15 attempts to have me hospitalized for everything guaranteeing honest test, diagnosis results has been made, including through the Ministry of Health in 2005 and the NDP who backed out, after starting negotiations to have me hospitalized. The Ministry of Health did send a letter later in 2005 saying I had been given every opportunity to receive medical care. Please read SummariesONE, and TWO, and you will see this was anything but the case. (Summaries ONE and TWO also linked on the side bar at the top left).
Through homcare services from 2003- beginning of 2006 provided by the Access Center who covered for the hosptials and doctors as well, I was badly abused by homecare as also. I cut off the remaining services off in 2006 and any association witht the prior Access Center (which I found out recently was closed) and my mom kept me alive.
Another attempt was made in earlier in 2008 to have me hospitalized for extensive testing and diagnosis for everything at a pace I can handle (I am mostly bed confined and wake up to convulsions daily and parts of me cramping and paralyzing the latter which is spreading even more rapidly) and did not work out, they were going to send an ambulance & have me admitted at the Western neurological hospital and quickly changed their minds when told there was more damage than on the initial letter, posted on site here & that it has progressed. I was asked if it would be a "clean slate", for whom? There is nothing I can do about the malpractice and negligence now. There is no "clean slate" for Human Rights violations and serious abuse, physical and verbal, that occurred and was allowed to continue. Also the intimidation and abuse allowed to go on, it was made very clear not to call 911 anymore or to attempt to have me hospitalized with honest tests, diagnostics and treatment for everything after 6 hospitals being involved in Toronto, some repeatedly.
No one can force a doctor or hospital to do anything, except the Medical Associations, which is rare indeed, and usually for sexual assault, although we tried through the Ministry of Health in 2005, who was also supposed to have an investigation into the collusion, abuse and no honest diagnosis treatment or care in 2004 and did not.
I did look for a Sponsor until about 2005 and are continuing again, as well as another push to the new head of the Ministry of Health and the NDP. Perhaps with a public push, it may happen, the guarantee of honest neurological and medical tests, treatment, and care though as proven impossible so far even by government they have refused to help. I will be requesting again as well as out of country paid hosptializtion the OHIP program that does this. You of course need a doctor here for that, I have none. Ontario should be paying and should have taken action years ago.
I also need a doctor, and am unable to get to one, because of my condition, I am mostly bedconfied, and even when (if) I will be able to, my medical records are so badly falsified, most doctors would not take me on, I am also a high maintenance case with my ME/CFS/FM, etc., prior to the extensive brain and body damage. There is extra billing time for ME/CFS for some time now, I require a doctor with knowledge of it and has time and patience as well as the neurological damage, so the cycle of discrimination stops. Also informed consent on any medication even considered being given to me, I research them all. Unfortunately, I need some to stop the Myocolonic Dystonia and spasmodic Dystonia, on top of extensive muscle and ligament damage done repeatedly in 2003 not diagnosed & Parkinsonism, immune support, lungs, pain etc.
If this can not be done in Canada, there are several Neurological Medical facilities in the USA that have the tests and knowledge needed and are up-to-date on ME/CFS, CNS damage, and extensive neurological damage from prescribed medications, as well as movement disorders, Dystonia, spasmodic Dystonia, and extensive diagnostic tests and viral tests, some very specific not available in Canada.
The majority of the Sponsorship funds can be left directly at the hospital, my mother Janet Benson has set up a Trust Fund at the Toronto Dominion Bank for any costs incurred, natural alternatives, legal, getting help, home care support (I can not stay alive without it) and/or sponsorship, the donation button goes to it, for full or substantial neurological hospital sponsorship please email for details.
Transportation & care provider or nurse to accompany. I am unable to bath/showever myself, change my clothes or prepare my own food, lift much more than a light book and am mostly bedconfined left like this for years. I can walk very little, canât push my manual wheelchair, and need my power wheelchair. Myocolonic Dystonia convulsions, movement disorders, have to be stabilized long enough for transportation.
I will not see any psychiatrists â full stop.
I need neurologists, internists, especially those who work with brain, extensive muscle ligament damage and CNS damage, from prescribed medications, movement disorders, dystoniaâs, and ME/CFS and my other illnesses. There is so much damage and my drug sensitivities, my case is very complicated.
I deserve better than this, there should be a public outrage at what has been done and allowed, and stop gaps put in to stop it from happening to others. The details of what happened and continue are horrendous and are posted on the Blog here and on the website very soon.
I never thought that this could happen, be allowed to happen in Canada. Mine is far from an isolated case.
~ Numerous politicians, provincial and federal, media, medical associations, Ombudsman, advocacy groups, have been contacted repeatedly for several years and also prior looking for Sponsors until my condition worsened drastically again, last year, even earlier this year I could barely speak at all, talk on the phone which is worsening, often I can not speak at all.
So far the Ontario and Canadian Government has proven incapable of ensuring my rights as a Canadian, both medical rights and human rights violations and have a hands off policy for doctors and hospitals.
It is long over due that people, advocacy groups, media, and politicians took a stand without fear of being 'sued' by the Canadian Medical Protection Association, The tightly knit group of health-care providers involved in the collusion to protect doctors and hospitals, that allowed abuse in the hospitals and my own home and helped to isolate me to hide me away leaving me to suffer daily, needlessly should be exposed not protected as should the practices of the psychiatric industry and the collusion allowed to go on in the medical profession here.
I had a bit of improve in early and mid-2008 and worsened again as those do just with ME/CFS and FM, Hep C and the extensive damage and movement disorders I have been left with. I am not giving up as slow as it takes, to get the honest neurological medical care I am entitled to by Canadian law, Canadian Human Rights and the Universal Declaration of Human Rights without abuse, coercion, torture, or making deals that I scratch off the human rights violations in order to receive medical care I am entitled to.
That I have survived this long is a testament to my courage, and determination to get the care I am entitled to and live an autonomous life as possible and move forward with my life.
I want in-house training for computer programs, making videos, digital art, and more, until the day comes I can get out and be part of the community, even if as prior only for short periods of time.
Please sign any Petitions, although they take along time, and usually have to be signed and sent in to the Ontario Legislature. Letters will be made as well to send, or fax, as I get more help with typing, editing etc. and for my website.
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