Friday, March 23, 2012

The ALS Therapy Development Institute to Launch Phase II Clinical Trial of TDI 132 in ALS Patients - MarketWatch

The ALS Therapy Development Institute to Launch Phase II Clinical Trial of TDI 132 in ALS Patients - MarketWatch

What's great about this drug is that Novartis® is already producing it for some forma of Multiple Sclerosis. You want to "latch onto" a drug like this, i.e. that is already being used as a treatment for another disease, especially one with a larger population. It is tough to get a drug company interested in a drug which is going to be used for a small population with a rare disease. The laws of economics dictate that a drug which spent years getting developed in a lab by scientists paid for thousands of hours in that lab, would have to recuperate that money when it sells in the pharmaceutical marketplace.

I've said it before and I will say it again: ALSTDI scientists are the ones who are going to find a cure or better therapies for ALS.  A greater proportion of the money donated to them, goes directly to the research lab than any other ALS charity.

I haven't updated because I have been going through some hardships and I didn't want to seem whiny or too negative. Even though I want to present the real story of living with ALS, I don't want to seem like I am doing nothing but complaining.  Even more importantly,  I get a little irrational when I am under too much stress, and something I wish I had learned when I was healthy:  it's not good to try to handle things while too emotional.  I have always admired people who can distance themselves and get through the crisis when they cool off and calm down. I am trying to become one of those people.

I have been with a malfunctioning wheelchair for months, and finally got it fixed.  But now even the wheelchair company admits it's all wrong and have to ask Medicare for approval to do it all over again. These new footrests that separate out to the sides for transfers, are a pain.  They limit what I can do in the apartment, for example get close enough to my file cabinet or my dresser drawers.  So we are requesting a footplate that folds up and down.  Also, since I have trouble getting in the right position under my desk [or under restaurant tables] to feel comfortable, we are asking for a tray that fits over the front of the wheelchair.  Nobody ask me when it's coming.  I don't know.  Could be six months, a year, or never.

I also broke out with a painful red rash on the back of one leg.  I thought it was shingles, but the nurse and one of the doctors at the ALS clinic looked at it and gave me Nystatin [anti-fungal] cream, and it is finally clearing up, only to be starting on my back. Ugh! It's the immune system again -- back to being fastidious about probiotics, capsaicin-filled peppers, and anti-inflammatory onions and garlic.

Even stranger -- for a couple of months I was feeling more fatigued than ever.  I would sit at the computer and nod off to sleep unexpectedly.  I would say that until at least 5:00pm, I could hardly keep my eyes open.  Finally, a good three weeks after my last appointment at the primary care doctor, my apartment phone rang and a robotic recording said that, as a result of the blood testing they had done at the doctor's office at my last appointment [again, almost three weeks earlier],  I needed to pick up an additional medication at my pharmacist.  Not only was my pharmacist closed at 7:00pm when I got the call, but the robotic message didn't even say anything about the condition this new medication was for.  So my mind went crazy trying to figure out what was wrong with me, and I wasn't too happy to get that robotic call, rather than a human on the other end.  Considering that the last time I went to my primary care doctor, she had to examine me in the waiting room, because she moved to such a small office that I can barely fit in the exam room, I think it's time to switch doctors.

it turned out to be a potassium deficiency.  Because of the diuretic I take for my blood pressure, I lose a lot of water from my system, and I have been eating a lot of banas and other potassium-rich foods.  But apparently, that wasn't enough, and my potassium was very low.  I feel better now, but I was shocked to do research on potassium deficiency and find out that this can be very serious.  It can lead to kidney failure and if left unchecked, even death.


Anonymous said...

Hi, I just wanted to say I'm glad you're back. I've been following your blog for a long time, and I'm very impressed by your strength and ability to deal with this disease with such grace and positive attitude.


Fern Ellen Cohen said...

It wasn't always so, and I foud that it's a slippery slope between telling the truth and being honest vs. being positive and not offending people. I have had angry comments from readers who have criticized me for being angry, and yet if I am really to do a service, I can't sugarcoat everything. Thanks for following this blog

Anonymous said...

I agree with Vesle; I admire you more than I can say.