From caregiving to research, ALS United Mid-Atlantic is committed to sharing the perspectives of those who understand ALS best. This is the first in a series of “Our Experts” posts as people with ALS highlight their experiences with ALS research.
My journey with ALS began in the fall of 2010. The weakness in my left leg was mild and I powered through thinking I was just getting old. In my mid-50’s at that time and having led a very active life I was determined to get stronger and overcome what I believed was a short-term problem.
Within two years, the lack of progress led to my next symptom which was extreme tightness in my hamstrings. No matter how much I stretched I could not relieve the tension in my legs. I eventually went to see an orthopedic doctor for an unrelated problem with my shoulder. He noticed my stilted walking gait and I went for X-rays to see what might be going on with my spine. There was nothing remarkable revealed by the X-rays so he sent me to a local neurologist because he felt there may be a problem in my brain.
The local neurologist performed EMG and nerve conduction studies after ruling out multiple sclerosis. He was reluctant to diagnose me with ALS but he did send me to a specialist at the University of Pennsylvania. At the time of my diagnosis in May 2013 it had already been 33 months since I noticed my first symptom.
At that time, there were a limited number of clinical trials available. When I tried to enroll in one, I was told that I had already had symptoms for too long a period of time to be considered as a trial participant. This was a difficult realization because I had hoped to be able to join in the effort to advance the science and hopefully find a reasonable treatment for ALS.
Fast forward to 2023. We now have multiple studies and trials being conducted all over the world. Opportunities are there for many patients that have been diagnosed within 2½ to 3 years of first symptoms. Clinical trials have advanced to the point where patients have a 70% chance of getting the actual drug because of the shared placebo group in the Healy platform trial being conducted at many sites all over the country.
While it is valid that slowly progressing patients may negatively impact the data in a clinical drug study, I wish I had the opportunity to be in one during my journey. I have been very active in what are known as historical studies, which have allowed me the opportunity to add myself into the mix. The CDC ALS Registry is something I always urge patients to join. There is also the ALS-TDI ARC program which I have been in since 2016. I was fortunate enough to be enrolled in the Answer ALS study some years ago. And finally, there is the Everything ALS speech study that I have been participating in. All but the Answer ALS study are actively enrolling patients. There are no real requirements other than you must be diagnosed with ALS to join these, and you can do them from the comfort of your home.
In closing, I would like to say that joining a clinical drug trial is a privilege for people with ALS who would like to help change the future of this disease. The risk of doing so versus the potential reward is so small that I find it hard to believe that drug studies still take a long time to enroll willing patients. I urge those reading this who can become a trial participant to strongly consider doing so.
To learn more about ALS research trials, visit https://alsmidatlantic.org/research/clinical-trials or talk with your nurse or neurologist at your local ALS Treatment Center.