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Fight rare neuro-immune disorders. Together.
February 7th 1998 was like any other morning. I got ready for work as a Consultant Cardiologist in Kent, UK, 70 Miles from London and went to work after saying goodbye to my wife Beryl who was a nurse in the same area.
That afternoon while I was seeing patients, I realized that something was wrong, maybe I was coming down with a bad flu? I had aches and pains, and felt a little off. I drove home and when I went to the bathroom, I realized that I could not urinate at all.
Being a medical family, my wife decided to take me to the hospital where I worked in Margate. The doctors and nurses on duty were concerned to see me as they all knew me as a doctor there and we all decided I had a prostate problem so requested all the necessary tests. I also suggested I stay in overnight so they could do some more tests as there was lots of numbness in my fingers and toes now and pain in my back which seemed to be in bands around my torso. As the night went on, I realized I could not move my feet, or my body, arms, head. I was paralyzed and could not speak. What was happening to me?
The hospital called my wife and told her at 6 am they would have to rush me up to St Thomas’s Hospital in London to get tested further as I was now paralyzed and unable to speak. They were worried. My wife followed the ambulance up to London and I was admitted for further testing and urgent care. The doctors thought I had Mad Cow disease, or TB of the Spine, I am Indian and lots of Indian people apparently carry TB with no symptoms.
I could not speak; I could not move but every movement in my room seemed like an earthquake. The crease in the sheet on my hospital bed felt like a knife sticking in my back. I had severe pain that was in bands around my body and I was thinking in my medical brain that this must be Transverse Myelitis, a very rare disease I had read about but never seen before. Could I have this very rare disease? I was burning up with a fever too.
I tried to talk and tell the Doctors but could not make a sound. I was paralyzed. I was treated for TB of the spinal cord and had numerous MRI’S, and scans of the brain and spinal cord which was very inflamed and had lesions. After a week of treatment with no improvement, they told my wife and children that they were not sure I would ever recover.
After 2 weeks I was finally given a diagnosis of Transverse Myelitis and sent home with an in dwelling catheter and my family were told that I may recover a little but not to expect much improvement. No steroids or plasma exchange were given as a treatment as they were not sure what was wrong with me. I wish they had done this at the time. It is my one regret since I could not say anything to them.
I have always been a doctor of Western Medicine that also believed in Eastern Medical Treatments and I started doing my meditation, biofeedback, visualization and yoga. I tried lots of things to get myself moving and finally started walking slowly with a gait. I did everything I could to get my mind focused on walking and also on visualizing my urinary tract healing and not having to use a catheter to urinate. I even tried an oxygen chamber like Michael Jackson, to help regenerate nerve growth.
Eventually I gained some of my energy and strength and was able to walk and get around. I gave up work as I could not return to it anymore. Things were different. I never knew when I could feel ill again. The following year I attended the First Annual Transverse Myelitis Conference in Baltimore, USA at The Johns Hopkins University with Dr. Douglas Kerr and his team. There were people of all ages there who had come to learn more about this rare disease that strikes 2 in a million people!!
This is where I met Sandy Siegel and his lovely wife, Pauline, who also had been struck with the disease. I met mothers of young babies, teenagers, older people like myself. We were all in this together and we listened intently as the presenters and doctors talked about this disease and tried to explain why we may have gotten it.
Two days before I was paralyzed I had my regular dentist appointment and cleaning. I had also had a mandatory flu shot at the hospital where I worked. I think it was the perfect storm and my immune system was compromised as I picked up some sort of bacterial infection and that is what I believe led to this. I learned a lot and I started working to heal myself with Eastern medicine and philosophy along with help from my wife and children.
I successfully did this and for the next 10 years my wife and I travelled around the world to visit my daughter in Australia, my other daughter in LA and my son in France. It was a wonderful 10 years of travel, healing, family, grandchildren and good experiences. I was a lucky man!
September 9, 2009, I had a knee replacement in my right knee as I was suffering and in a lot of pain. I was convinced I would be able to handle this surgery. I was wrong. I had a stroke after the surgery and was extremely ill for a few months and even though I had PT twice a day, I was still in pain to try and walk. I had PT for months and did everything I could. It was exhausting.
Would I be able to recover again?
We went to Australia to live with my daughter and family as I needed help and care and I started treatment again. PT, chiropractic treatment, and anything I could do.
My biggest problem since 2009 has been recurring urinary tract e-coli infections, bladder spasticity, probably 60 hospital visits for a few days to a few weeks over the past 7 years. I had read about botox injections to the bladder and have had this done many times. It worked really well and helped me stay well for a long time. I found a great group of doctors here in Perth, Western Australia who have helped me deal with all of my ailments, the most difficult one being antibiotic resistance.
Three years ago I suddenly was no longer able to walk at all and have been in a wheel chair since. My wife Beryl is my main caregiver and my children and grandchildren here in Perth have helped me as much as they can. I have been told that my TM has returned and is now more like MS. I have lesions on my spinal cord and my brain stem in the white matter. I have been told that I can never walk again but I am doing everything I can to stay positive.
I celebrated my 85th birthday on March 4th 2016 and my family all came together here in Perth. My son and daughter flew in and so did my brother and his wife from Singapore. I am grateful and happy for everything I have. I am grateful for my wife who has looked after me without ever stopping even though it is very hard. I am comfortable and try to enjoy each day and always have a very positive and happy outlook.
Humor is really important too!! Being able to laugh is most important!
I am still hoping that something might allow me to walk again and stand again. I would love that! I am still hoping for a cure so I can do some of the things I used to do without ever thinking twice.
Dr. Ram Rao
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