The last couple of weeks have flown and we now only have a week before Jill’s knee replacement surgery. We spent 4 hours last week at the pre operation clinic. We were interviewed by a doctor, theatre nurse, physiotherapist and an occupational therapist. I think we know all the possible out comes – the only one that really worries us is the reaction of anaesthetic on Jill and the MSA. Jill has also had another lot of blood tests and further x-rays. I guess they really need to be very careful. We have had the electrician and plumber here to do some preliminary things prior to changing the kitchen cupboards. I need to change the heating ducting and that means I have to get under the floor, something that I have not done in the past twenty years. I think my weight may be the problem. Over the past few weeks support for an MSA awareness Month has been promoted and Pam sent this letter out.
The “Miracles for MSA” forum on Facebook and the “shydrager” MSA online support group on Yahoo Groups have been collaborating and brainstorming on the idea of promoting an MSA Awareness Month. We are being ambitious and are going ahead with doing it in the month of March. .
“Miracles for MSA” on Facebook and the shydrager Yahoo Group are open to members from all over the world. As such, we are adamant that this month be inclusive of ALL individuals and organizations that have an interest in Multiple System Atrophy. This is NOT a USA event, it is a WORLDWIDE event!
We are drafting a “press release” that will be shared around the internet and we want to include a list of known MSA charities so that whoever receives the notice will be able to donate or fundraise for the charity of their choice if they are inspired to do so. Those of you who are affiliated with a charity that accepts donations I would ask that you double check the list of charities below and make sure your details are correct. Also if you know of other Non-USA charities that would include MSA support, education or research that aren’t on the list please let me know and I will get them added. All of the MSA community will benefit by more awareness which can translate to more dollars for research, support and education programs.
Along with this, support for a flower to represent the group has grown and they have adopted after a vote the Purple Passion Flower as the symbol and one of the group members has produced a mandala for the flower. The Miracles for MSA have also wrist bands to help promote the awareness of MSA.
Passiflora incarnata Purple Passion flower has several common names including Passion Flower, Purple passionflower vine, Apricot vine and May Pops. Passion Flower is a very attractive sprawling or climbing vine up to 20 feet long with edible fruits and flowers. The unusual flowers are 3 inches wide with several petals and a purple fringe and have a rich fragrance resembling that of carnations. The smooth, round 2 inch fruits are edible and turn yellow when ripe. Passion Flower vine is attractive on a garden trellis, fence, hanging over a wall or sprawled on a slope
Michael is about to start cutting & colouring Jill’s hair so I had better finish.
See you next on the net
Hello,
I have read with great interest and many emotions the story and journey of Jill and her beloved family and friends. I actually stumbled onto your website when I saw the magnificant Passionflower mandala created by one of your Miracles for MSA group members. I am a psychologist practicing in the Philadelphia, Pennsylvania area. I am going to start a blog and have been searching for an image which captures the essence of what I hope my blog will offer: hope, community, courage, love and much more. As you see from my email address, (passiflora is passionflower), I have been drawn to the beautiful Passionflower for many years and see the multiple uses for healing and managing difficult emotions. I totally understand if you want to keep this special symbol for your group, but I wondered if I could use this mandala on my blog page and, of course, mention (write a blog entry, etc) about Jill, your incredible community, and the journey you all have/are taking to deal with your grief.
Regards,
Lynn Caesar, Ph.D.
http://www.drcaesar.com