Tuesday 26 February
Quote . . . “ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disease robs people of the ability to walk, to talk and even blink an eye. It traps them inside a body they no longer can control and ultimately prevents them from breathing as it takes their life. There is no known cause of the disease, although military veterans are approximately twice as likely to develop ALS as the general population. ( I was never in the Military )
The day can be summed up in a direct quote from Robert Anderson, a person living with the disease who receives care from The ALS Association’s “Catfish” Hunter Chapter. Using a computer-generated voice on his tablet because he can no longer speak, he told the FDA panel: “ALS is fast. We need FDA to be faster.” – end quote.
“When a trial is going well, those with ALS should be able to keep taking the drugs,” said Robert Anderson, an individual living with ALS. “What is the risk — you think it might kill him sooner? It does not matter, if you may be dying in a year from ALS anyway. You need to step beyond that in your heads.”
Here in New Zealand my experience with the DHB, Enable, Doctors, Health Care Workers has been an eye opener to say the least. The Good, Bad & Indifferent.
Two years ago, my partner and I hiked the Tongariro Crossing in ideal conditions. The following day I fished the Tongariro River. Returning home I began to experience “drop foot” as I tried to continue my running. My hands began to fumble keys. It took both hands to open a door, turn a key. My partner and I researched the internet, we had a meeting with Dr. Tessa Jones in Wellington. Blood test, hair tests, the whole nine yards. Showed me that my body was full of toxins, Cyanide, Lead and Mercury were top of the list. I also had a near fatal bike crash back in 1996, fractured skull, brain damage, etc, etc. Thus began a program to build my body back to a healthy status. Naturopathic supplements, daily hormone injections, the whole enchilada. Tessa Jones didn’t want to go near the Neuro word and so six months later, my partner and I paid for an analysis. Basically I already new I had MND. David Abernathy agreed. That was September 2011. February of 2012 I was spiraling down and out. Wellington Hospital and the Respratory Unit to the rescue as I truly crashed one Saturday and muy Emily rushed me to OutPatients. They had me in for tests and into Bowen for observation. Then gave me a BiPap device that helped me back to life.
I no longer inject myself, I did it for 18 months, took my supplements and totally dried my savings. Buying wheelchairs, rebuilding our bathroom, buying bits and pieces certainly broke our collective Bank. The local DHB contributed to the bathroom but it took us standing on our rights to get what worked best. I found their attitude demeaning. Then the local DHB and Enable called us in for a Wheelchair Clinic. They promised but did not deliver and the time it has taken to get a reasonable chair, a compromise, has broken my back and I feel as though I have a finite time left and they will not support me to do what I do. Finally a new Doctor took over my case after I was discharged :) by the Hospital. That either means I was cured or dead! I was neither. The new Doctor sat and listened, I felt heard for the first time.
Today, I feel beat. My hand and legs are fast fading, my breathing is not happy with the heat, even though I am, it’s been an awesome summer. Now I am scared of what Winter will bring. Pneumonia is a killer. I am feeling abandoned somewhat by family and friends. This is hard. Some friends have hung in and travel over an hour to visit. I love dialogue. I love my solitude. It’s a challenge. I can no longer hold a phone, my typing I save for my Blog and if it weren’t for Skype, who knows. I talk to others with MND in New Zealand. My basic medical support team is awesome. Wellington Hospital staff are awesome. I am disappointed that David Abernethy and Tessa Jones do not communicate. And until recently the local DHB were not at all retroactive, we had to push. Our MND fieldworker Moira has been the one bright light in all this. She organizes, communicates and inspires. That is what I need, what muy Emily needs more than anything. I weep for muy Emily.
So there you have it, just thinking out a loud. I will not let go of speaking up or out. If I don’t . . . there is no point. I will not go quietly unto the night. Or if I do go, I hope it is, quietly in the night :) But as of now, this moment, I am not ready, or am I?