I've been taking the new VFEND® medicine for just over 2 weeks now. My body has most certainly continued to deteriorate during that time. I am not necessarily saying the medicine isn't working, only that my ALS symptoms have gotten worse in the last 2 weeks. As I was lying in the bed last night futilely trying to fall back to sleep, I realized that I've definitely slipped into another phase of this relentlessly progressive disease.

My speech has gotten very weak, to the point that I only speak when I absolutely have to. When I do speak, I can see people trying to read my lips. It's sad when I'm talking to someone and they clearly don't understand what I'm saying, but they politely try to act like they do. In no way do I blame them, though, since I can't understand the words coming out of my mouth either.

I am beginning to drool now. It is the most bizarre thing. I'll be sitting there not paying attention, and drool will almost slip out the corners of my mouth. I won't even get into what I do to my pillow at night.

Finally, since I fell twice in 2 days two weeks ago, I now spend 99% of the day either in my wheelchair or the desk chair in front of the computer. Even transferring from the wheelchair to the desk chair is scary for me. I no longer secretly wonder in amazement at how elderly people could walk so slowly with their walkers.  I can't even use a walker because I don't have enough upper body strength to lean on the walker without collapsing. Unbelievable!

It is all very frustrating, but it is even more frustrating for Tara since she has to literally do everything for me. This disease is harder on my family than me. When you add the possibility that other family members may have inherited the genetic predisposition to get ALS to the frustration it causes every day, it leaves you feeling helpless (see picture of my new medication below).  Please pray for my family. All of them, including my parents, and my sisters and their families. It is harder on them than me.  Pray also for an effective treatment or cure for this horrendous disease.

Alright...I went to the Oncologist/Hemotologist last week. He was very encouraging, saying that if his hypothesis is correct, I will make either a full or partial recovery. I have heard this several times before so I approach these things with a healthy dose of scepticism.  I’ve said before, however, that I believe in and am praying for a miracle. I want to believe this is it. Besides, my other option is to sit on my hands and do nothing and watch my body deteriorate more every week. Below is what I think the Dr. said.

Dr. Reid, believes my condition is a result of an imunocompromised individual (me) coming in contact with a trichothecene mycotoxin (a fairly common mold related toxin) resulting in mycotoxicosis. He told Tara and I that he has completely eliminated symptoms in 2 individuals with suspected ALS.  He has three current patients whose ALS is much more severe than mine, and according to him they are improving. One is on a respirator and is regaining movement in his arms. 

I gave blood samples and he is guessing that they will find elevated levels of mitochondrial metabolites. That is apparently a by-product of mycotoxicosis. He would treat the mycotoxicosis aggressively by doing 3 consecutive days of dialysis, followed by the use of several antifungal drugs (none of which  I've ever heard of).  I know it sounds far fetched, but I don't see much harm in trying his approach. Following my visit, I did several Google searches on mycotoxicosis, etc., and I couldn't find one mention of it associated with ALS anywhere. I am not sure if that is good or bad. I am scheduled for a follow up 2 weeks from the last appointment.

I started an exciting new therapy this week using a device called Vitalstim.  Vitalstim has only been around for 3 years.  It is essentially an electrical stimulator they put on your throat to improve the strength of the swallowing muscles.  A side benefit is that it typically improves speech as well.

I was fortunate to learn about Vitalstim through a friend that is a Speech Therapist at the Vanderbilt Stallworth Rehab Center.  She mentioned this new therapy to me and that she had had some success with other ALS patients.  After only 2 Vitalstim treatments, I feel my voice is already stronger...but I still sound retarded.  I will probably attend this therapy 4 days per week for a total of 3 weeks. 

I am disappointed that this is another example of a treatment or technology that should have been suggested to me by my many physicians, but instead I told them about the new technology. 

Whoever said you need to take responsibility for your own healthcare was right!