December 15, 2009 1
We arrived at the Duke ALS Clinic about 7:45 am and left that evening at 6:30 pm. It was a very long day, but worth it.
We met with Dr. Richard Bedlack, M.D., PH.D., M.S.C , director and head neurologist of the Duke ALS Clinic in Durham, NC. Dr. Richard Bedlack has devoted his career to ALS. He works directly with approximately 400 ALS patients and only takes a limited number of new patients monthly. He sees patients, I believe, two days a week and the other days he does research. He works directly with Wake Forest, Emery, and, of course, Duke. He is very up on all the latest research and clinical tests going on for ALS. He is a very energetic, positive, but direct person. He advocates for ALS by going to congress with patients to put a face on ALS for them.
Dr. Bedlack had reviewed all the information from all of the doctors and practitioners that were sent to him about all I have gone through since the onset of my arm and hand problems. He had done his homework on me as he was very knowledgeable about all of it as he talked about what I had gone through.
He proceeded to tell me that no data has proven that heavy metal poisoning develops ALS. He said that the majority of the supplements I have been taking have been tested in clinical studies and have no evidence of helping, reversing, or stopping ALS.
He gave me the most complete physical exam that any neurologist has so far. From his exam he told me that: I had shoulder and thigh atrophy, my trunk muscles were weakening. Both my upper and lower motor neurons were effected which means I have a wide spread disease of both. From the physical and my history he had been provided he believes that I have been approximately 1 year and 10 months into ALS. He stated that 10% of patients live 10 or more years, 50% live 5 or more years, and 40% live less than 5 years.
The good news was that my speech and upper respiratory and swallowing had not been affected. He told me that they can’t stop or reverse defects at this point in time, but believe they can slow them down. He told me that, “your fighting it hard, but not smart”. (Make sure to read his article at the end of this.) He wants to put me in some clinical trials that they are conducting at the Wake Forest, NC clinic that they are hoping will show results of slowing down the progress. Dr. Bedlack will send my information to them to see if they can get me in to the next trial. He will let me know in February more on this.
He said in January, 2010 the FDA has approved a stem cell clinical trial that will take place at Emery. Twelve patients have already been selected for this trial. This will be the first stem cell clinical trial for ALS ever.
I asked him about going to China for stem cell and he said “that is a disaster” as they have no regulations at all. Patients have gone and paid $30,000 dollars and have come back with no improvement. He mentioned that USA doctors have gone there and visited some of the clinics and saw how they were run and reported them to the Chinese government to shut them down.
Dr. Bedlack ordered another EMG, even though he had the results from my previous two. He wanted to find out what was going on over my entire body, not just my arms and shoulders. I had the EMG (most intense one I’ve ever had) and the results were that I do have a “widespread motor neuron disease all over my body”. Dr. Bellack said that only time will tell of progression of this disease. He thinks at this point in time I am slightly fast, which can slow down at any time or continue. They now have base lines on me from this visit, which will tell them my progression in future visits to the clinic.
From what Dr. Bedlack saw and the results of the EMG, he believes that I do have ALS, but had blood drawn for testing to rule out the only other things it might be. The only other things that could cause these symptoms other than ALS could be “copper deficiency” or “paraneoplastic neurologic syndrome”. These tests have been sent to a lab and the results will be sent back to him.
I met Dr. Bedlack’s staff. Each one is specialized in a specific area for ALS patients. I met with the Occupational therapist who gave me an exam and suggested I order a different sling to support my right arm (which I ordered when we got home). Wearing this sling will help my balance when walking.
I also met with the Physical therapist who also did an exam on me. She gave me some exercises to do. I met with a breathing therapist who measured my lung capacity. 4.95 is the normal lung capacity for someone my age. My lung capacity is at 3.15. She suggested that we get a BiPap breathing machine for me to wear at night. This will help my lungs stay strong and can slow down any progression in the lungs. I am meeting with Linn Care on Monday January 4th for them to instruct me on how to use the BiPap unit. I also briefly met with the speech therapist. We ran out of time this visit and I will actually have an appointment with them on my next visit to Duke.
We met with a representative from the Catfish Hunter ALS Association which is located in NC. She will put us in touch with the Tennessee ALS Association. The NC ALS association has a support group that meets monthly in Ashville, NC I believe (I’ll have to recheck my notes) that we may attend as it would be closer than the nearest TN one in Nashville.
We ended our day talking again to Dr. Bedlack who went over everything they had found that day (which I mentioned above) and his advise for me is, “Attend an ALS clinic (which I am now doing), get in clinical trials, and become an advocate for ALS.
I am to go back to Duke ALS Clinic on February 16, 2010. Diann and I will drive over the day before and probably drive home the day after.
Dr. Bedlack and his staff are very knowledgeable and very personable. It sure beats the other neurologists that I have seen that are not that knowledgeable about ALS and don’t really give you much hope. They just tell you, “you have ALS, we don’t know what causes it, nor do we know how to cure it. Go home and see you in three months.”
I felt very positive after leaving the Clinic and Dr. Bedlack in that I now am with a doctor and therapists that deal directly with ALS patients and know
Richard Bedlack, M.D., Ph.D., M.Sc., is director of the Duke ALS Clinic in Durham, NC.
How I’d battle ALS if it happened to me.
On the beach this summer, reading an old book of poetry, I looked up and saw a sign like the one below. Maybe it was heat stroke or the daiquiri I was sipping, but I came to appreciate an odd relationship between the poem in front of me and that sign. The poem was Dylan Thomas’s famous meditation on struggling against death, do not go gentle into that good night. I read it and imagined what I would do if I got caught in a rip current. As that current started to pull me out and under, I’m sure I would rage, rage against the dying of the light, as the poem implores. I’d give it all I had. My first instinct, though, wouldn’t be to swim diagonally, as the sign recommends. Instead, I would swim as hard as I could straight toward the shore. And chances are I’d eventually become exhausted and drown.
Figure. PHOTO: JEFF …
The sign promised a better way to burn and rave. Though this counterintuitive approach couldn’t guarantee my survival, it certainly would increase the chances of it.
Later, back at work in the Duke ALS clinic and nursing a sunburn, I thought about my day at the beach and how it related to my experience with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease). What would I do if I received a diagnosis of ALS, or if one of my loved ones did? Like most of the 1,000 or so patients with ALS and their caregivers that I have seen over my last decade in this field, I’m sure I would fight it-in Thomas’s words, blaze like meteors against it. But without all my years of scientific and on-the job-training, would I know the best direction to go in?
A Google search on ALS would certainly tempt me to consider that the diagnosis was wrong. Maybe it’s Lyme disease or heavy metal poisoning, I would wonder. Further browsing of the Internet and conversation in online chat rooms would make me want to try a number of alternative or off-label therapies for the disease-things like chelation, unusual diets, or maybe even a stem cell transplant in a mysterious clinic in a foreign country.
But like the person who made the sign on the beach, I have learned that there is a better way. I’ve seen data showing that the diagnosis of ALS, when made by an experienced neurologist, is almost always correct. Therefore, once I had an opinion from an ALS expert, I wouldn’t need to expend a lot of energy considering other possibilities.
In addition, ALS experts have already looked critically at many of the alternative and off-label options being pursued and found no merit to them. Thus, instead of furiously chasing these down, I would pursue the treatments that have been shown to prolong life and/or preserve quality of life; these include riluzole, early bipap, optimal nutrition, and care in a multi-disciplinary clinic.
Realizing that research is the only sure way that I (and everyone else with ALS now and later) will get closer to a cure, I would try to participate in every study that I could, monitoring legitimate Web sites like clinicaltrials.gov to look for opportunities. Knowing that this is a rare disease, and one in which research funding is desperately needed, I would burn and rave as an advocate, doing all I could to raise awareness and funds for groups like the ALS Association (alsa.org) and the Muscular Dystrophy Association (mda.org). I would travel to National ALS Advocacy Day (alsa.org/policy/alsday.cfm) every year to make sure my elected representatives understand how tough this disease is and that they continue to support programs that help ALS patients and caregivers. I would stay in this fight even if my loved one eventually lost his personal battle with the disease.
In the end, would the things I’ve learned ultimately save me or my loved one from ALS? Unfortunately, they might not. Neither Thomas’s poem nor the sign on the beach promise salvation. The sign, like my experience treating people with ALS, simply maps a path which optimizes the possibility that something good will come from all the valiant efforts. Whether it’s a rip current or a terrible disease like ALS, let us all continue to rage against the dying of the light, but in a direction that makes sense.
Copyright © 2009, AAN Enterprises, Inc.