One of my friends posted a link to the ALS Forum, which has a research based angle on what's up in that part of the ALS world. There are a couple interesting articles there right now, one related to IPLEX and the other related to the familial enzyme SOD1 that is linked to the hereditary cases of ALS. Here's a link:
http://www.researchals.org/
On the personal side, I'm headed off to Mexico for a fishing trip with a great group of friends. On one hand, it is hard to leave H, but she is in good hands here with family that came out to visit and friends around the neighborhood. Hopefully this break will rejuvenate my spirit a bit and the ocean and blue water is major soul food for me. (So, of course we live in Colorado!) I will create a Mexico blog to post photos, and news from the trip. We have a mini fishing tournament set up, so that should be fun. We are calling it the "No Shore - Offshore Derby," since not one of us lives on the coast.
Also, a little bundle of joy was brought to our house yesterday. Crystal, H's step-sister just had a baby 3 weeks ago and she came out to visit. Parker is so cute, and H was ALL SMILES yesterday with him in her arms. She just absolutely LOVES babies!
Peace,
B.
Friday, June 5, 2009
Monday, June 1, 2009
Some awesome Friends and times
Hey All,
I just wanted to say, once again, how great it is to live in a place where people care and are so supportive. We still have meals delivered to the house regularly, and we still have friends coming in to help out and hang out with Heidi, and we are humbled by this every day. Even with that awesome support, we still have seen this neighborhood's families go way beyond what I would ever expect.
This is evidenced by a Luau party that was thrown "for us" but also as a fundraiser for ALS-TDI here at the end of our cul-de-sac. There was a big tent, catered food, amazing donated deserts by my friend that I mentioned in my last blog in the food service business., a shot "luge" a DJ and plenty of adult beverages to go around. This was all the result of a conversation I had with one of my friends a couple months ago answering the question "what can we do for you?" More people want to help than we "need" to help with our day to day issues, and so I offered the possibility of another party like the one we had a couple years ago like this. With that, the ball was set in motion. Several families ran with it and the result was a great time had by all, and I believe something like $1,400 raised for ALS research. Another of my friends from Hawaii heard we were having a Luau, so proceeded to send out fresh leis from the Islands so we could be authentic and feel a little of the Aloha. Two of my musician buddies played a couple of acoustic sets, and I even got to "bang the skins" of my conga/bongo set and sing a little, which always puts a smile on my face, though my skills are somewhat, shall we say, unrefined.
Heidi stayed a good bit longer than I think even she expected and had a smile on her face all night, which is priceless to me right now, and I'm sure is to many of you, so Thank You SO Much.
So, in keeping with my last post...we are here doing our best to live life. Taking the pain one dose at a time, smiling almost as much, I hope. It's all part of life, I suppose, though I'd be happy to do without the pain part of it for a while. I'm sure lots of you out there reading this have a photo or two from the party, so if you send them my way I'll post a few here or on my facebook page. I have a pretty funny one that I'll put up tonight. One of my buddies wore a wetsuit and carried his wind-surfing board around for the first hour of the party. Classic.
A couple of other things going on. Our Girls are on the fundraiser bandwagon and have decided to "sell stuff that other people don't want to bother with" at the neighborhood wide garage sale on June 12/13. All proceeds will go to ALS research, once again, so if you live local and have some "junk" you want to get rid of you can drop it off at our house and they'll sell it and donate the money. I think they are planning to sell cookies and lemonade and I heard that some of the local teenagers also might be doing a car wash, so come on by.
I, in a stroke of master luck, will still be in Mexico on that day and will have to leave the logistics to Lisa, Phil and others around here that can help get things organized. Lucky me, I mean bummer. ;-)
Also have to send my props out to the local ALSA chapter (Rocky Mountain) who sourced a loaner power chair for us that has a tilt function on it and a special chair for the shower. It fits H better than the one we had and hopefully she'll be comfortable for longer periods of time. It does not fit perfectly, but is an improvement over what we had, so that's all good. We like positive steps around here. I met a few of the nice folks over there and they have lots of stuff for PALS that help with day to day things like mobility, bathing and some technology. Suzanne, their care specialist/coordinator was a huge help and if you are a PALS or CALS in this region, you would be well advised to check in with them and get registered, so you can borrow from their "loaner closet" or participate in some of their programs. In fact, they have an on-line auction going right now with some really cool items in advance of a fundraiser that they are putting on. You can check out the items here and bid if you like.
http://www.blacktie-colorado.com/auctions/index.cfm?fuseaction=Auctions.Landing&aid=215
I believe bidding is open through the day on Wednesday this week.
Ciao for now.
B.
I just wanted to say, once again, how great it is to live in a place where people care and are so supportive. We still have meals delivered to the house regularly, and we still have friends coming in to help out and hang out with Heidi, and we are humbled by this every day. Even with that awesome support, we still have seen this neighborhood's families go way beyond what I would ever expect.
This is evidenced by a Luau party that was thrown "for us" but also as a fundraiser for ALS-TDI here at the end of our cul-de-sac. There was a big tent, catered food, amazing donated deserts by my friend that I mentioned in my last blog in the food service business., a shot "luge" a DJ and plenty of adult beverages to go around. This was all the result of a conversation I had with one of my friends a couple months ago answering the question "what can we do for you?" More people want to help than we "need" to help with our day to day issues, and so I offered the possibility of another party like the one we had a couple years ago like this. With that, the ball was set in motion. Several families ran with it and the result was a great time had by all, and I believe something like $1,400 raised for ALS research. Another of my friends from Hawaii heard we were having a Luau, so proceeded to send out fresh leis from the Islands so we could be authentic and feel a little of the Aloha. Two of my musician buddies played a couple of acoustic sets, and I even got to "bang the skins" of my conga/bongo set and sing a little, which always puts a smile on my face, though my skills are somewhat, shall we say, unrefined.
Heidi stayed a good bit longer than I think even she expected and had a smile on her face all night, which is priceless to me right now, and I'm sure is to many of you, so Thank You SO Much.
So, in keeping with my last post...we are here doing our best to live life. Taking the pain one dose at a time, smiling almost as much, I hope. It's all part of life, I suppose, though I'd be happy to do without the pain part of it for a while. I'm sure lots of you out there reading this have a photo or two from the party, so if you send them my way I'll post a few here or on my facebook page. I have a pretty funny one that I'll put up tonight. One of my buddies wore a wetsuit and carried his wind-surfing board around for the first hour of the party. Classic.
A couple of other things going on. Our Girls are on the fundraiser bandwagon and have decided to "sell stuff that other people don't want to bother with" at the neighborhood wide garage sale on June 12/13. All proceeds will go to ALS research, once again, so if you live local and have some "junk" you want to get rid of you can drop it off at our house and they'll sell it and donate the money. I think they are planning to sell cookies and lemonade and I heard that some of the local teenagers also might be doing a car wash, so come on by.
I, in a stroke of master luck, will still be in Mexico on that day and will have to leave the logistics to Lisa, Phil and others around here that can help get things organized. Lucky me, I mean bummer. ;-)
Also have to send my props out to the local ALSA chapter (Rocky Mountain) who sourced a loaner power chair for us that has a tilt function on it and a special chair for the shower. It fits H better than the one we had and hopefully she'll be comfortable for longer periods of time. It does not fit perfectly, but is an improvement over what we had, so that's all good. We like positive steps around here. I met a few of the nice folks over there and they have lots of stuff for PALS that help with day to day things like mobility, bathing and some technology. Suzanne, their care specialist/coordinator was a huge help and if you are a PALS or CALS in this region, you would be well advised to check in with them and get registered, so you can borrow from their "loaner closet" or participate in some of their programs. In fact, they have an on-line auction going right now with some really cool items in advance of a fundraiser that they are putting on. You can check out the items here and bid if you like.
http://www.blacktie-colorado.com/auctions/index.cfm?fuseaction=Auctions.Landing&aid=215
I believe bidding is open through the day on Wednesday this week.
Ciao for now.
B.
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