This year has sure flown by. It is so hard to believe a new year is right around the corner, let alone my birthday and Christmas again.
For all the faces that are no longer at my table for christmas dinner, there have been many more loved ones added for the ones who have been lost to the other side and that has helped to balance it out. I am thankful for the newer people in my life for being there. I have made some amazing friends in my new town in the last few years. Family is any one who loves you unconditionally which is so true. Blood alone means nothing to me, never has.
I am enjoying life these days and there are no longer so many stressful things happening in my life. That is a first in many years. I am once again looking forward to Christmas and all it brings. To me, Christmas has never been about the gifts I get but always about the gifts I love to give to friends and family members. Usually smaller inexpensive things that show how well I know them or something they have been needing to make their lives easier. I buy their gifts and then can hardly wait for the person to open them.
I went to my appointment at the HD clinic in Vancouver this July. The news is all good. With the gene silencing, they first did a four month safety study and gave people different strength of doses to make sure it was safe first and they proved it was safe. Then the next part of the study was also four months and that was going to be using people who had obvious HD and use that study to show that the drug works and again show safety. They have or are just finishing that one now. Then once they have proved that it is safe and worked in the second study, the next study will be open to more people.
I was told when my turn came, it would take my going to Vancouver every four months for a shot they give you through a spinal tap and the injection goes up into your brain and shuts off the gene and grows new brain cells. It seems incredible that they can do that. It used to take brain surgery to implant it but now it is a spinal tap and a way less evasive procedure.
But this is real and happening as I write this and once they have cured people with HD, they can announce to the world they have found a cure but until then they are all working on proving their work first. I am booked for next July as well. I am looking forward to more updates on the studies at that time as well. How amazing to just shut off our bad gene and it is like the HD never happened to the person with it!
I was sorry to hear my good friend Susan Tolley has retired from the HD clinic after so many years of being there as a social worker and advocate to people with HD and their families. I met her in 1998 at my first clinic appointment in Vancouver. vThrough the years she helped me with many things starting with helping me get my medical CPP to getting disability later. She was a fierce warrior for our team for many years. I thank her for all she did for me as my social worker for 18 years. Big hug to you my friend! I will miss you at the clinic on my annual visits.
I have been busy each day bringing in firewood and winterizing my new place. I am looking forward to tucking in for the winter and knowing my new place will always be nice and warm. I am living in my sister Shannon’s place now and she lived here for 13 months before she went into the home for two years. I can feel her energy sometimes and it gives me a feeling of comfort to sleep in her old room and sit in her kitchen. I have many fond memories of her here which I am thankful for. And now I am adding my new memories on top on that to this place which i love living in.
I hope everyone has an amazing Christmas and that you keep in the loop with your local HD clinic so you will be updated regularly. There is also the Horizon and other online places to keep you informed as well. If you need information you can also ask your doctor who will connect you with the right sites as well. Merry Christmas to all those Huntingtons warriors out there.
Remember "There are three simple rules in life. If you do not go after what you want, you will never have it. If you don't ask, the answer will always be no. I f you do not step forward, you will always be in the same place."