Holding on to What He Has
It always amazes me when you hear a so-called expert say something doesn’t work and at the same time, you have experienced it working for yourself. So it is with pleasure that I use this space to share my thoughts and experiences with receiving electrical stimulation for treatment of my ALS-related dysphagia and voice problems.
I was first diagnosed with ALS in October of 2007 and it has now been over a year that I have been undergoing VitalStim® Therapy for incapitating voice and swallowing difficulties. If you are reading this because you or family member has been stricken with ALS or a similar neurological disorder, I am truly sympathetic, but at the same time urge you to be resolute in seeking relief wherever it can be found.
During my treatment with VitalStim, my voice has continued to get worse, but my ability to swallow has remained pretty much the same. There are many mysteries to this debilitating illness and one of the mysteries is, each person who is diagnosed with ALS may have different symptoms and the progression of the disease can also be different for each person. Twice while being treated with VitalStim, I had a MBS (Modified Barium Swallow) test done to evaluate my ability as well as the effectiveness of my swallow. The first test was done early on not only to see how my swallowing was, but also to establish a baseline for future tests. Approximately six months later I had a second MBS test and my swallowing had actually improved a slight bit. For those who are not so familiar with ALS and how the disease works, just keeping what you have is fantastic and to see an improvement is a minor miracle. I have spoken with another ALS patient who is also being treated with electrical stimulation for his voice and swallow problems and he told me that he has been on and off this treatment and there is no question that when he stopped the VitalStim treatment his ability to swallow decreased – and decreased substantially.
After being treated with VitalStim for approximately a year, I decided to do my own test to determine if this therapy is really doing something for me, or is it just me and the disease in my case just slow in progressing. So, I told my speech therapist I wanted to take two weeks off to see if I can notice any difference. After about a week, I did start to see a difference with two of the things I do on a daily basis: The first change I observed was the terrible difficulty I was now having in swallowing the many vitamins, supplements and prescription drugs I am obliged to ingest daily. The second thing I noticed was related to a voice exercise I do every day. The exercise is a “Falsetto Exercise” where I say “ah” and I try to raise my voice up to the highest pitch I can. After stopping the electrical stimulation treatment I was no longer to reach the higher pitches I could prior to stopping the treatment.
So after two weeks, it was time to go back to the VitalStim and I was VERY curious to see if I would regain what I had lost when I stopped the treatment. Well, I was pleasantly surprised! After just one VitalStim session my ability to swallow my pills was much easier and I now could hit those higher notes while doing my “Falsetto Exercise.”
Will this treatment work for everybody? Probably not, but as I said earlier we have to look at every treatment modality available to us. I definitely think it is worth trying as I have seen what it does for me and for other ALS patients to whom I spoken who have experienced similar positive results. I have heard and read where some doctors say that this treatment does nothing for ALS patients and they have advised ALS patients to avoid it. In my opinion, it is unfair to discourage a person with a severely degenerative condition from venturing forth and trying new and potentially helpful treatments that might actually work for them and extend and/or improve their quality of life. In the end hope is what gives us a reason to keep pushing.
My goal in life these days is to Make A Difference, in my life as well as others, and by writing this, I do hope I have achieved my goal.