New ALS drug slips through telling Phase II clinical trials

New ALS drug slips through telling Phase II clinical trials
Very exciting!! Epilepsy drug found effective in blocking glutamate and slowing progression of ALS.

New Medicine -- Better for Edema?

I had discovered that one of the medications that I was taking for hypertension [high blood pressure] called "Azor" was in the category of "calcium channel blockers" and have as the number one side-effect: edema. My swelling, especially around my ankles, has been a bone of contention for me. So on my last clinic visit, I spoke to Dr. Wu, my neurologist, and brought this to her attention. She called my primary doctor and discussed a changeout of the medication. I went to my primary doc last week for my quarterly followup and she told me to stop the Azor and let it go out of my system for about a week before starting the Benicar HCT. I immediately started seeing an improvement in my foot swelling. Now I have begun the Benicar HCT, which contains a diuretic, so it should get even better. While I was at the primary doctor, I got the seasonal flu vaccine, and that night I hardly slept because I felt feverish -- an obvious side effect. Thankfully, it went away the next day.

I think I will be able to manage the cost of the new shoes to go with the new braces, so I will go to the foot doctor in the next couple of weeks. I don't know the results of the overnight sleep test yet, so I don't know if my bi-pap settings will be changed. There is some talk of taking away the bi-pap altogether and switching me to the LTV Ventilator, which is stronger. As I understand it, the bi-pap shoots air in and lets my diaphragm breathe out. But when the diaphragm gets too weak, the ventilator is brought in, because the ventilator not onnly blows air in, but also takes it out, so it actually does the breathing for me. But this is still "non-invasive" intervention. Some patients choose to have a tracheostomy and invasive ventilator, which is a whole other story and a whole different level of care, which means nursing home, or a lot of money [about $100,000 per year] to come home on the trache and vent, which most people cannot afford, and don't even consider an option.

Next week will be six years since my diagnosis. As most of you know, my symptoms started way before then, some of whih I can even trace back a decade or more before diagnosis.

Off-topic: The situation in Haiti is devastating. I am proud of our American troops and volunteer doctors and other medical personnel who have one over there to help. And I must give a shout-out to the Israeli medical personnel who were first on the scene with a fully-equipped temporary hospital, and first to do some rather complex surgeries. In Israel, everybody has to serve in the armed forces, men and women. They go into the service at 18 and attend University after their service. So by the time they get to higher education, they are older than their American counterparts and really know what they want. I have posted a picture of me between two Israeli soldiers [who were so good-looking!] during my trip to Israel in 1987. Enjoy! I wish I still looked like that [sigh]..

Check Out My Newest Article on Associated Content

How Technology Changed and Enhanced My Life with a Disability
When I was diagnosed with ALS/Lou Gehrig's Disease in 2004, I fought isolation and dependence with the help of life-changing technology. Without it, I would have been institutionalized.
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A New Year and a New Decade

I am always happy when the holidays are over, but I have to say that I had a great Christmas Day with the family, and I can't believe how my nephew and two nieces are growing up before my eyes.  I think everybody learned to be calm when I cough, and it doesn't mean I am going to collapse and die in front of everyone.  On the whole, my family and good friends seem to be more tolerant and accepting of the little idiosyncracies of this annoying disease.  New Year's Eve, I went to Nancy's party with the Access-a-Ride connection at Long Island Jewish Hospital to Nassau Able-Ride.  Both rides were perfectly on time and in sync with each other.  Then Louise came to pick us up to take us home.  The worst part is having to take the manual push chair, which is a hardship on the aide, and extremely uncomfortable for me.  I can't recline, tilt, or otherwise make myself comfortable and take the pressure off my butt.  And by the middle of the evening, my braces were killing me.  But next time I know to bring along my medication so I won't get so stiff.

I am sick of talking about "the book" and anxious to continue writing it and also socially promote it on the internet via Twitter and Facebook, but I haven't decided if I am going to create a whole new Twitter and/or Facebook alter-ego, or if I am going to do it with my present identity.  And I don't now whether to bring back my other blog "Of Jews and Chinese Food" to garner interest and/or to get feedback.  As usual, my mind is going in different directions, and I'm all over the place.

I have to make a lot of appointments for the new year, and my ALS clinic is right behind me following up.  First, they want to do an oxygen saturation test on me overnight.  My respiratory therapist and I decided to do it after the new year, and this is after the new year, so I have to call her and schedule it.  I also have to go to my primary care doctor because I need a blood pressure followup, and my neurologist from Cornell called and spoke to her about changing my medication to remove the calcium-channel-blocker in the Azor with Benicar because I discovered that this was causing edema.  So I have to take the fasting blood test to give my cholesterol numbers to the dietician at the clnic and also see my doctor about the medication.  I have to replace the seat belt on my wheelchair, because it doesn't close anymore due to the thicker cushion it now has to wind around.  I prefer to make these calls by Sprint Relay because my friends are all at work and not at a phone all the time, so they end up playing a frustrating game of phone tag, which delays everything for days sometimes.  And sometimes when I sit here and talk through the aides, something gets lost in the translation.  I also hear that CVS is giving the H1N1 vaccine again, so I have to make sure I do that too.  I finally got my replacement cards for my medical insurance since my lost wallet debacle in November.  In fact, by now I have replaced everything, so I am back to "normal".  It just seems that the days fly by and I get very little done.  The other issue of course is my napping during the day, which is an issue of spasticity medication, which has to be addressed with an appointment with the spasticity specialist I was referred to at the Hospital for Special Surgery, to see about alternative treatments.  Also, my settings on the bi-pap will probably have to be adjusted after the results of my overnight oxidation test.  And, I still haven't picked up my new braces and order a new pair of my $150 [not covered by insurance] Frankenstein shoes to go with the new AFOs.