My Everest…

We were at a family gathering this weekend and as the day wore on and people came and went my brother and his wife had his in-law’s come for dinner.   I remember when my dad passed away that her step-dad had made a donation to the Huntington society.  As we were in the kitchen  I asked my sister-in law do you think he still makes donations to the Huntington Society?   I told her that every year around the time dad passed away we get a thank you from the Huntington Society for making a donation.  If it’s him doing it I would like to thank him for doing so. It’s such a kind gesture and to do it annually that’s going the extra mile!   As we were leaving exhausted from everything.   Sitting, Standing,socializing, and eating way too much, I got a nice compliment. From one of them I can tell you are feeling much better!   Last time I saw you.  Your smile was forced….today your smile is genuine and you even have a bit of a spark back in your eyes!   Well Damn!   If that wasn’t one of the nicest things I have heard in a while ! Upon reflection as to where this spark is coming from?   I am pretty sure it’s because I’m putting myself out there for the world to see.  Lumps, bumps, bruises and all, and I feel good about it!  

Lot’s of thoughts running through my head today the HD walk is a bit away but a friend of the family has offered to make team t-shirts for us so just trying to think about a humorous way to put our team name Hunting for Hope on them and I would like to put the Huntintington gene on there in and it’s CAG repeats circled in bubbles and somehow do the ones after 36 in a different color to show they are the “bad” ones and have either the classic Elmer Fudd come out to hunt it or perhaps pac man game style get to the giant pill that says hope and then you can eat all the bad CAG repeats.  Or you can just do it space invader style ! Tons of ideas wonder what we will come up with!  Elmer Fudd wasn’t my idea but it was the one that finally got the juices flowing up here.  As I was struggling for ideas and I had nothing for the longest of times so kudos, to my fellow teammate and Looney Tunes fan!  Heck we could do a whole bunch of things with the hd gene and Looney Tunes…..Preferably have Marvin the martian eliminate it forever, but that is not even in our reach in my lifetime I would just want researchers to slow down the effects of it and give the people living with it quality of life. So as we were talking the walk and t-shirts with my son and his fiance. They asked me something about fundraising.  I told them I have asked a few people to donate to the walk, mostly the places I go for treatments.  They have been quite responsive in regards to that so that was nice of them to donate and I am thankful to them for that. I told them that I really don’t like to ask for $$.  I feel awkward doing it as my parents always told me that is a form of begging.  My husband told me it’s not begging because it’s not asking for $$ for yourself it’s asking for $$ for HD it’s a different story !  Well then I turned around and looked at him and said then please ask some of your friends at work to donate (he is at $ 0) and see how easy it goes for you!  I was told by someone a long time ago and this is what i told my team that the more awareness you create around a cause the money will come too.  Just like now with cancer…. you don’t need to say anything else and people just open their wallets and donate.

Credit: Wikipedia

Hopefully one day that will be the case with HD.  So with awareness comes $$ so all I want them to do is to create a buzz and the more buzzes we create its a good thing.  Right now from registering a team I have 20 people participating in the walk.   Wow! I didn’t even realize it was that many! But there are a few that messaged me that they couldn’t attend due to other commitments and that is just friends and family …..so imagine the impact we will have when we walk in the group and people see us!   Or better yet when we go home and walk in our t-shirts and maybe people will ask what Hunting for Hope is?  This is why I want the CAG repeats on the shirt, this is why I want to be a voice for people like me before it’s too late.  When is the right time to speak about it?   When I can’t ? That’s too little and too late !  Maybe I can give some hope to someone who has HD and is afraid of speaking about it and knows I have some form of it and can approach me and feel ok talking to me about it ?

My day was made in many ways yesterday!  

I reached & exceeded my target fundraising amount for the HD walk, at physio I have managed to reach the top of the door of destiny (Doom) with both the sides and front of my arms reaching.  Even in all the packing chaos I am somehow still progressing.  Don’t ask me how it just happens.  My physio is so happy with the progress that I don’t even want to acknowledge it.  If he could, he would rent a plane with the smoke coming out of it with some kind of interesting message!  I asked physio about why the flare bear seems to be napping?  He told me it was because of the progress on the door.  I was like what does that have to do with him?  Everytime you are here we do a little more range of motion as well as incorporate different exercises all with the goal of not flaring up the  central nervous system (the flare bear).   The more we can do without flaring it up the more the whole body can tolerate pain.  Just like with my thumb in the drawer.  Yes it hurts, but I thought it would be far worse than it was.   That was due to the fact that we are slowly ‘desensitizing’ the central nervous system. I thought I heard lullabies being played up there….hey I hope his playlist is on loop and never runs out of batteries!  Here’s hoping for a long nap, fingers crossed.  I will still tiptoe by him. There is no playing hard rock tunes here. I will take a win for now ! 

Every night I try to  help hubby out with some little things in the garage to help him see the end of his pile.   The inside of the house is pretty much done except for a few things but everytime I walk by something it gets taken to the basement pile to either wait for more stuff to accumulate for a box or whenever I’m in the mood to do it.  Slow and steady wins the race.   Been busy with  packing and organizing the HD walk.  With the HD walk  we are doing pretty  good and I am pretty proud of myself for having the courage to stick my neck out and then the feedback I got so far was really good. So the HD walk was going smoothly.  The packing sucked but it’s packing ……