Imagine you have just retired and you are up north, enjoying the sun, playing bowls and having a drink with fellow bowlers when your mobile starts to ring. Five seconds later you can hardly breathe as your son-in-law has just told you that your daughter has MS. You immediately think it is not possible, your daughter is healthy, MS is some horrible disease that other people get and if someone was to get sick it should be you, not your daughter. You are at Brunswick Heads, you pack up your camper, you can’t get home quick enough and you travel for over 20 hours. The trip is just a blur.
The next day the whole family was at Kerri’s bedside. Kerri wanted us to put some positive thoughts on stick on labels that she would then attach to her walking stick. It was too much for me, I had to leave the room and when I came back to the ward the whole family was in tears. As a family we had just suffered our first bout of grief. Our daughter; a mother, a wife and a sister was never going to be the same again. Kerri lived her life in the fast lane. She had so much energy and had time for everybody. She was always thoughtful and helping people.
Over the next 18 months we watched Kerri go downhill suffering many MS episodes and her health deteriorated to the extent that she had to wind up her business.
I would like to give 3 reflections of Kerri. The first was of Kerri struggling to go out her front gate, waiting for her children to come home from school. It hurt that she was not able to meet them at school. Kerri always looked after her body and was always fit. She loved to go to the gym and ran in half marathons. Kerri spent Christmas 2009 lying on our couch and not having any energy to participate in the celebrations. Every other year since Kerri was a small girl she was so excited at Christmas time. Kerri struggled to do her grocery shopping – her husband or mum had to assist. I remember thinking that Kerri was barely capable of writing out a shopping list. Contrast that with a girl who won a scholarship and was so academically able.
Kerri has a great husband in Glenn. He has stood by her in all things during this horrible period. He initially reacted by renovating the back of the house and making the home wheelchair friendly. During this time both our grand children grieved and wanted their mother to be able to do the things she always did. At 7 yrs and 9 yrs they would get up and make their breakfast and lunch and get themselves off to school. They had to do far more chores than other kids of this age. They always knew when Grandma had been there as their bed had been crisply made.
The future looked bleak.
As Kerri’s dad, I would like to have wrapped her in cotton wool and wished everything would go away. Kerri and her family were the ones making the decisions. As parents, all we could do was observe and support the family when asked. Kerri was taking a cocktail of horrible drugs and, because of her chronic illness, Lorraine and I felt it was like walking on eggshells when we were around her. We had to choose our words very carefully. The only way we found out the true extent of all the horrible symptoms that she was suffering was to watch her You Tubes on the internet. How she produced those early You Tubes is beyond me as she was always suffering from brain fog and fatigue. Kerri was searching for answers and she did that by communicating with other people with MS around the world with her You Tubes. This is how she eventually found herself to be a spokesperson for the CCSVI cause in Australia.
About 4 years ago, one of Kerri’s internet friends told her about a vascular surgeon in Italy named Zamboni . His wife had MS and he was able to give her relief from MS symptoms by opening up her narrowed jugular veins. Kerri found that she could have her veins tested in Melbourne by a Doppler examination and discovered that she had narrowed veins. She was the second person in Australia to undergo CCSVI treatment. All we could do was to hope that Kerri would get some relief from the procedure. I am one of the world’s greatest sceptics. Kerri had a myoclonic jerk in her right arm that her neurologist said that she would have to live with for the rest of her life. I reasoned that if this spasm disappeared it would be proof that CCSVI treatment was a valid approach to helping people with MS. Within a few weeks the spasm completely disappeared and in Kerri’s case CCSVI was an absolute success. In the past 3.5 years Kerri has been episode free.
Most of you know Kerri through her videos so I thought I would concentrate on how MS and CCSVI affect the family. Glenn and the children would say they have their wife and mother back. We have our daughter back and we are enjoying our retirement and travels. We do worry at times that Kerri is putting herself through a lot of stress by standing up to the medical establishment. We understand that she is compelled to do so because of the injustice of the situation. Kerri is well enough to go back to work but she has chosen the pathway to help others with CCSVI and she has combined this with part time studies in Psychology at University. One positive that I take from this situation is that I have met some wonderful and supportive people.
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