Wow! I am totally blown away by how awesome Beers for Bobby was this weekend. First off, I want to thank everyone who attended the event! I also want to give a huge thanks to everyone who helped make this event happen , especially Bridie and Ali! Thank you to O. B. 's for hosting the event for us. Also a big thanks to Derek Luke and Newport Storm for providing us with some killer beer, and to everyone who donated raffle items. I can't wait to do it again next year!
Breath Stacking
To all my ALS friends,
I have recently been introduced to breath stacking and have seen a great deal of benefits from it. I know that there is not much information about it online and I want to change that. Next week I am going to make a short YouTube video on what it is and how to do it. I am looking for additional input though. If you do breath stacking please shoot me an email with your experience and thoughts / tips on it. My email is bforster31789@gmail.com Thanks and have a great day!
To All My ALS Friends
A few people asked me about this after I posted about it the other day. You can purchase this drug through www.lovesteve.com It is a bit of a hassle to get as you need an IND prescription and some doctors are unable to prescribe it based on hospital policies. I am currently in the process of getting this here for myself and I will share anything I learn about the process here.
Need Help!
Hey all,
I need some help. There is a drug that was approved for the treatment of ALS in Japan. It has been proven safe and effective in slowing the progression in ALS. It is called edaravone and essentially is a high powered antioxidant. It is possible and legal to import this drug into the U.S. All you need is your Dr. to sign off on some paperwork. My doctor is supportive of this, but due to Mass General's policies he is unable to do it. So, I am in search of a doctor who will. Does anyone know any progressive thinking doctors in or around New England? Even if you think they may, I will follow up with them. Thank you so much for your help!
Do you like pickles? Then you are going to love PickALS!
Last week I had the pleasure of meeting the creator of PickALS Arthur Cohen. This guy is the man! He makes the most incredible pickles I have ever had and the best part is all of the profits go to ALS research! Get yours today at www.pickals.org
What a great two days!
The past two days have been great! I got to see many great friends including three badasses living with ALS Pat Quinn, Beth Hebron and Arthur Cohen! I had a great appointment with Dr. Bach as well. We are going to be trying out some changes with my respiratory care and I will be introducing breath stacking into my daily routine. I am hopeful that these changes will allow me to stay off of a trach for a while. I will do my best to update you all on my respiratory care pretty regularly.
Off to Jersey!
Today we are packing the van and heading to New Jersey to see Dr. Bach. He is a respiratory specialist who specializes in noninvasive ventilation. We are hoping to work with him and his team to prolong me getting a trach a while longer. I will update you more on my appointment later this week!