Our Journey Begins

Mom was diagnosed with Alzheimer's disease 3 years ago at the age of 62. We believe the symptoms started around age 60. Alzheimer's is a cruel disease that devastates entire families. My mother is a wonderful woman, sweet and warm. She has always been a joy to be around. This disease has robbed her of her communication skills, and a connection to the people around her.

Her disease is moderate. She still functions fairly well, and is able to take care of most personal needs on her own. However she has lost the ability to hold a conversation or engage in any type of meaningful personal interaction. She paces through the house constantly, and chatters using the same three or four phrases repeatedly. More recently she has started wandering off if not watched, which worries all of us. She still lives at home, and my father is her primary caregiver. He is doing a wonderful job, and she is safe, apparently happy, and healthy. But all of us feel a great sense of loss.

Several months ago I found an article about a doctor treating Alzheimer's disease using Enbrel. Enbrel is an FDA approved arthritis medication, but it is not approved for use with Alzheimer's disease at this time. According to the article, the doctor was achieving significant improvement in symptoms with this treatment. I sent the article to my father, who filed it away with the many other articles he has received.

Just after Christmas 2008, my sisters and I were at home visiting my parents. We went one afternoon to visit an aunt who lives in town. Over the course of our conversation, she brought up the treatments I had read about. Since this aunt is a doctor, she had my attention really quickly. She saw great potential for this treatment. She explained that it was "off-label" meaning they were using the drug for a disease that it was not approved to treat. So the treatment would probably require some form of waiver of malpractice, and would not be covered by insurance. However, she insisted that if it did indeed work, it was our best hope of finding anything to help my mother.

Armed with new found confidence after speaking with my aunt, I headed back to my parents' house and did what all computer geeks do, I got on the internet. I was able to find the clinic in Los Angeles doing these treatments, along with contact information. I also found numerous you-tube videos posted by families with family members receiving these treatments. Links to both the clinic, and the videos are in the links section. There are also many articles on these treatments. They are listed as Enbrel treatments, Etanercept treatments, or Anti-TNF treatments - all mean the same thing.

Armed with a pile of information, I went to talk to my father. My enthusiasm, and my aunt's enthusiasm meant nothing if my father wasn't interested. He is her caregiver and he makes the decisions. We discussed the treatments and I showed him some of the videos. I know it was hard for him, this has been hard for several years. But the same spark that lit in me, lit in him that afternoon. He agreed to at least pursue more information.

I sent an e-mail to the Institute of Neurological Research, run by Dr. Tobinick (the pioneer of these treatments) asking for more information and a list of doctors who might live in the general vicinity of my parents. I then headed back home hoping for the best.

The next day, my father called. He had received a reply from the clinic, they were accepting new patients, and he had scheduled a phone consult. The consult cost $500 and would last approximately 30 minutes.

I did not get to listen to the entire call, but my father later reported that after their conversation about my mother's condition, she appears to be a good candidate for the treatment. They requested quite a bit of medical information about my mother (MRI, bloodwork, chest x-ray, summary of history by the neurologist, etc.). My father is in the process of working through information requests and doctors appointments to gather this information, which will be sent out to California. Assuming all is well with the medical information, they will be scheduling the first treatments at the INR in California around the end of January. They will stay about three to four weeks, through the initial evaluation and the first four injections.

Fortunately, there is a doctor about 2 hours from my parents' house who can continue the treatments if this works.

This is the first time I have been hopeful for my mother in three years. If this works like my research shows, I may have my mother back in a month. For now, I hope for the best and prepare for the worst. But I will use this blog to chronicle our journey, and hopefully keep everyone informed how she is progressing.