Helping In Memory Of A Stranger

Yesterday it was posted that one of the members of the Stiff Person Syndrome group I have joined passed away. Although I never spoke with Tracy nor had the opportunity to see any posts from her, my heart goes out to her family and friends.  We who are fighting this battle can sympathize and place ourselves in her place and for the family who had to watch a loved one taken far too soon from their lives.

As I have mentioned this condition can be so confusing because of the severity and different stages that neurologist are trying desperately to understand. Each person fighting this condition knows themselves how everyone has a unique set of symptoms and prognoses but we all have a demon bond known as Stiff Person Syndrome we are fighting.  What makes it so hard too, is there is not enough people to do a proper study to understand the complexities and underlying cause other then they believe it to be autoimmune.

They are currently doing studies with Stem Cell Transplant, here in Canada and in other places in the world, but unlike other countries where our medical system is free, (to a degree).   There are many others who are desperately trying to raise money to risk their lives in the hope that the transplant will possibly (I say possibly because it is not guaranteed) cure them.  Two of these wonderful and brave people I have not spoken to but know how desperate their plight has become are willing to take that risk in order to have a chance.  Please see their stories and fundraising pages under my other links, on this page.(UPDATE I HAVE REMOVED THEIR PAGES AS THEIR FUNDRAISING CAMPAIGNS ARE NO LONGER ACTIVE, DUE TO NOT BEING ACCEPTED INTO THE STUDIES)  You can also donate to the Stem Cell Foundation.

The transplant itself does not come without a high risk I have been chatting with a brave person here in Canada who will be the third person to try this procedure in Canada for a chance of being cured from Stiff Person Syndrome.  The procedure itself requires doctors to take a person's immune system down to zero and then rebuild their immune system back with cells that have been harvested and sterilized from their system, prior to starting very strong doses of chemotherapy. Once their immune system has be wiped out they re-transplanted their cells back into their body in the hope it will work much like a new born babies system that is able to fight against germs and pathogens.

The risks as I mentioned can come at a high price from infections, organ shut down and can cause death.  To quote in part Dr. Atkins from the Ottawa Hospital Research Institute (from a news article on CNN) "this procedure is only reserved for  those with only the most severe autoimmune diseases. And Dr. Atkins decided Stiff Person Syndrome fit that bill and was willing to perform the stem cell transplant. His first patient is symptom-free and his second patient is symptom free but still needs to take a few of her medications." Dr. Atkins is cautious about saying stem cell transplantation is the definitive treatment for Stiff Person Syndrome.  The rarity of the disease makes it difficult to find research funding - not to mention participants.

To those brave people who are willing to try for all of us to fighting this disease, I urge you to help if you can. If you are unable to give money please message me if you can think of ways for them to fund raise, so I can pass on ideas to them.

 I was never the type of person to come into the lime light before and ask for help but as I progress in this condition I can't help but feel the passion to step in that light and for everyone fighting this demon known as Stiff Person Syndrome.  And to have been told I would not qualify for the test studies; this is my way of giving back to a community of small but brave people who are fighting for their lives. I don't want to wake up tomorrow to read of another person's passing who lost their battle without hope.

    

Moving Slow In A World Moving Fast

Feeling good today so decided I'll take advantage of a good moment to do a quick trip to Safeway.  For me that use to be a 20 minute journey, from leaving the apartment to the store, shop and come back.  Now by the time I shower (rest,) then trying to get dressed (stop to rest again,) takes an hour to do if not more before even leaving the house and I'm not talking about getting all gussied up before I leave my place those days are done for me. Walking down the hall to the elevator praying no one else leaves their apartment and makes me try and hurry should the elevator comes before I get there.  I pray too that the few last polite people left in this mad dash of a world we now live in is not in front of me once I get off the elevator and want to hold the door for me to enter into our parking garage, again walking fast is no longer going to happen, no matter how nice you are being.

I finally made it to Safeway, which sadly I wish I could walk to like I use to, I can see it from my place but those days are done too, last time I tried I was only just past our apartment before I realized it was a big mistake in thinking I could make that walk. And before you wonder should I be driving the answer for now is yes I am able to, they (my doctors) monitor me and we know one day that day may end too but I'm hoping that doesn't happen too soon I still have 4 years on  my loan I took on my car, had I known what lay ahead I would have never purchased.  And I plan on using it as often as I can on my good days.

Back to my journey, I park in my lovely handicap spot, ignoring the stares as I leave my car looking as normal as I do and too stubborn to use my cane.  Slowly I make my way to the door and as I do this some woman comes roaring up and almost knocks me over as she hurries to the door ahead of me.  As she passes I (not very nicely) said "excuse me," she turns to me and in a raised voice says "I'VE GOT STUFF GOING ON".  Really you have stuff going on?  Imagine and here I am struggling to walk just as you happened  to cross my path and taking too long for a person who has "stuff going on."  I didn't know whether to laugh or yell the same back to her at that moment, as she huffed away from me.

When I got home and as I write this it makes me wonder how did our world become so crazy and hurried, is the world coming to an end unless we all hurry or is there some kind of super human race of life, that someone forgot to tell me about?  Are we so stressed and wound up in this world of ours that we don't have time for common courtesy? When did that happen?  I cannot recall a time back when I moved as freely as everyone else does, that I would ever behave that way to another person? I couldn't imagine doing/behaving that way, regardless of how shitty of a day I was having, when did this behavior become the norm?   Even now as I struggle to accept my new reality in this fast moving world of ours I often catch myself moving aside to let those hurrying to get to where ever it is they find is so important that they must rush to get there, I have made a decision; regardless of how much of a hurry they are in I'm going to force them to slow down, no more stopping and letting them pass, why should I.  If you happen to be behind me I'll apologize now but be prepared as I slow you down, and can feel you getting antsy behind me...I plan on yelling at you I'VE GOT STUFF GOING ON! As I slowly continue on my way.

 

The Ribbon Awareness Debate

The great debate of an awareness ribbon, above is the design that a great group of people who I now have become part of their group and "family" choose to represent our "special" group.

Why on earth was a zebra striped ribbon picked? I and many others wondered?  Anyone who knows me knows I am not an animal print type of person, but when it was explained to us I could not agree with the decision more, and I give great credit to those involved.  What did sadden me about the "big ribbon debate" taking place on the support group website (which happened to take place shortly after I finally joined. which took me some time  to do but after reading posts deciding that I would like to join, to get some answers and talk to others who know what I am going through)(yikes), some of the comments and discussions that I read and had taken place after it was "unveiled and announced" to the group not to mention the happiness that it had made it on the Awareness Ribbon Charts. One of the big factors for our condition is stress which can bring on debilitating spasms so why it became such an ugly debate is beyond me, my own thought on this;  people are people and no group will ever come to a unanimous decision nor can you hope to please everyone. Leaving it in the hands of a small but thoughtful group is how any decision has the best chance of making it happen, or it never will.

Another thought that came to me as I read the comments is some people hold such hatred and anger over their circumstances that they are only happy when hurting others like they are hurting.  My advise for what it's worth; let it go and be happy to wake up each day regardless of how much pain and suffering you are experiencing, every one of us is with you not against you :-) even if you feel everyone and the world is.

Every cause it seems has a ribbon and a colour these days, but ours stands out as rare as everyone that is fighting this battle, don't you think?   

As it was presented:  

“Zebra print represents rare diseases...silver represents our "TINMAN" moments/hours/days, etc...The sparkles represent the "GOOD and GREAT" days we all enjoy...and, lastly, we are 1 in a Million and there is no other ribbon on the charts that even looks anything like this! Like I've always said Stiff Person Syndrome = "STRONG PERSON SYNDROME"! Thank you all for appreciating our official ribbon!”

Many of you who know me know I am struggling to understand such a rare disease where there is not a whole lot of information available nor understanding of why some treatment works for some and not for other and until a "cure for all" or a better understanding of this condition is known, I will proudly wear a zebra striped ribbon, because I am One in a Million!  

For a list of awareness ribbons please see the following link:

http://www.disabled-world.com/disability/awareness/ribbons.php