Sblinks

 

Check out:

http://alsguardianangels.com/

http://alscare.com/

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Hey everyone, Rich LOVES to know that people have been reading his postings here on The Mackney Warriors blog. That’s what the COMMENTS link (sometimes shown as No Comments (hint, hint) or 1 Comment (yes, that’s usually me, his sister) at the bottom of each post is for. So, next time you stop by to catch up on what Rich as been up to, please click on the COMMENTS link at the bottom of the post and send Rich a few words. Doesn’t have to be anything clever or fancy, just a few words to let him know you’ve stopped by. Thanks!

~ Liz

Happy Friday!

May 29, 2009

PT went very well today! Kudos to Wolfgang, Andi, Austin, Kate and Jack who all worked with me and Ilana. Then Ilana took me to a store to find an outdoor walker that fits a 6’4″ guy (me!). We found it!!! Now I can stand up straight when I walk around. Tested it in a Chinese restaurant for an early dinner and it worked great. When I Googled “walkers for tall people” I found most only go up to 6ft 2 in. So if you’re TALL, you’re ………

Acupuncture Day!

May 28, 2009

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Tom is picking me up in a bit to drive me to Dr. Lainey Niemiec. We’ll have some wine together with friends Rhea and Jesse, then a lite dinner followed by acupuncture in the guest bedroom. Then sweet dreams! Tomorrow morning will start with acupuncture, then breakfast, then Tom driving me home. I’ll be relaxing…

goodnight-tweetyGood PT session today, but started back on my two antibiotics to fight my blood infection (coccobacilli) and already feeling run down from it. Spent time loading info into the PatientsLikeMe website and seeing how other ALS patients share info. Then Jack and Vicki came over to help unload the recumbent exercise bike that Lauren gave me from our minivan. They also helped jump my car battery (not using the car much lately), and helped add tennis balls to the feet of my new “sport” walker. Followed up on email, then watched the video of today’s stage in the Giro d’Italia bike race. For good luck wishes to Lance Armstrong, we ate Italian (pizza) for dinner!

This website allows you to connect with people who have the same sickness as you. It has a tremendous database and volumes of information.

http://www.patientslikeme.com/

Busy day!

May 26, 2009

Started off with more IV chelation therapy to keep lowering the lead levels in my body. Then visited my other doc who is managing my bloodborne infection. We’re going to restart the antibiotics now that I am stabilized. Also had blood drawn to see if my bilirubin level is back to normal.

Now I’m back home resting, listening to Nora Jones on pandora.com and signing up to the Philanthropic Photography Group via Meetup.com. It’s going to help raise money for ALS research!

My niece Rachel just graduated from high school.  Voted “Most Liked Student” by the senior class. Party time! My nephew Zack rocked thru his freshman year at the U of A and is knocking out a math course this summer so he can focus on greater things as a sophomore. Bright future for this guy! We will be 60 family/friends strong today in celebration. Hope you all are having a happy and safe weekend.

Wow- check it out! www.als.net

I just spent 90 minutes on the phone with David and John who did a fantastic job of guiding me through the mission of ALSTDI. I am really impressed with this organization and the breadth of their research work. You will be too. Check out their website. They have an enormous database, an excellent interactive forum, and monthly educational webinars. I did the webinar today and loved the format! They are the largest in the world at what they do.

There are so many ways we can all give them some help. So visit their website, and pick something you can do to help make a difference. Thanks!

It’s really very simple! Just look below this message and you will see a line saying “No comments” or “1 comment” or some other number. This is a clickable link to a comments page where you can add your own. Try it out! We’ve seen over 80 visits to the blog over the past two days, but no one is leaving a message…. Let’s get interactive!  I’m lookin’ for you!

All the best,

Rich

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