As I mentioned above, I know now that I had my first CD symptoms at least two years prior to my formal diagnosis and those symptoms manifested themselves while playing golf. I play golf right-handed, so I must look left to find my target. For a couple of years I had been noticing that when I would look left it was a little difficult. It wasn’t as much that I couldn’t look left as it was that I couldn’t KEEP looking left. And because I only noticed this when playing golf, I just figured it was a case of bad nerves or even the golf “yips.” I assumed that I just needed to relax, keep practicing and either it would get better or not. I figured if I struggled playing golf, well that wouldn’t be the end of the world. The golf issues were happening in the 2020-2021 timeframe. Then in July 2021 I was fortunate enough to retire from a very stressful occupation. My retirement had nothing directly to do with my CD (as of course I didn’t even know I had CD at that point) but had everything to do with being burned out with my job/occupation. I was happy and relieved with my retirement and my stress levels did decrease significantly but the CD symptoms just continued to get worse.
I didn’t just retire and start sitting around the house. I began a nearly yearlong project of renovating my in-law’s house. It was during this time that I became aware of the pulling to the right while doing other daily routines. Mostly I noticed it while I was painting but I also started to notice that when I would relax in a chair with my head back against the cushion that my head kept drifting ever so slightly to the right. These symptoms just kept getting worse and worse and by May of 2022 I knew I had a big issue that wasn’t just going to magically go away so I started searching the internet for answers. At the same time, I went ahead and scheduled a doctor’s appointment with my General Practitioner.
It didn’t take me long when searching the internet to figure out that I had CD. Of course, I wasn’t positive, but nothing else I came across made sense. When I finally had my visit with my General Practitioner it was in July of 2022. My GP sent me to have X-rays which showed some compression in my neck and based on that he made an appointment for me to get an MRI. He also prescribed muscle relaxers and pain medication. I’ll briefly say that the relaxers did nothing and my pain level was never extremely high. I would describe my pain level in my neck and shoulder area at that time at about a level of seven out of ten. I did use the pain medication for a couple of months but after that I decided that I didn’t really need it. I don’t like to take medication unless absolutely necessary and as I write this today, I am not on any medications at all.
As for my MRI experience, let me sum it up by simply saying that it was not good. I ended up having two MRI’s (the second one was needed because the first one was unsuccessful). My first one was in September 2022. It was unsuccessful for two reasons: 1) I could not keep my head still and the MRI Technicians tried to put supports in that would keep my head still but to no avail. 2) I ended up asking to be removed from the MRI machine after about 15 minutes due to claustrophobia and the frustration of having the Technicians constantly asking me to keep my head still (like I could control it). A month later I ended up getting a second MRI. This time I got a sedative to take beforehand that helped tremendously and the MRI machine was one of the wider versions, so my claustrophobia was not as bad. When I finally went to the neurologist to review my MRI results, they ended up not telling us anything new. They saw some compression but still said that due to even the minor head movement still going on during the MRI that it was not crystal clear how much compression was really there. The neurologist suggested a third MRI which I declined to do.
My overall experience with doctors during my journey has been underwhelming to say the least. Between my General Practitioner and the three different Neurologists, none were of much help. They were all well-meaning and wanted to help, but they had no idea of what to do besides the standard medication, Botox, and possibly DBS (deep brain stimulation). Not one of them had ever heard of Dr Farias and the Dystonia Recovery Program (DRP) or anything else like it.
I started on the DRP in late September 2022. By February 2023 I was not progressing as quickly as I would like so I decided to try Botox. I had it done twice (the initial one in February and the second one in May). I wasn’t so scared to have needles stuck in my neck but I was very anxious about the thought of that and something going wrong. However, the actual procedure of getting the injections was fairly calm and easy. I didn’t have any side effects except a little bit of trouble swallowing. The injections did help reduce my pulling symptoms, but they didn’t stop them, and it felt like it took the Botox two to three weeks to kick in and then only seemed to help for about eight weeks total. When it was time for my next injections in August, I decided to stop the Botox. It has been over three months now since the effects of the last Botox injections wore off and as of right now, I am happy with that decision. My symptoms may be a little worse, but I feel in order to overcome this I need to experience all of the effects of the dystonia to truly be able to deal with them and track my progress.
The last point I want to make is about how extremely helpful the Dystonia Recovery Program has been for me. Just knowing that you aren’t alone in battling a rare issue like this is huge. I can’t say enough about how much calmer and self-confident I am than I was prior to starting this program, as the online training has significantly helped improve/reduce my symptoms. I won’t go through all I do on the platform daily, but I do concentrate on three areas: 1) Meditation and breathing exercises. 2) Physical exercises. 3) Eating properly. I firmly believe that the combination of stress and not eating well are what caused the dystonia to begin with but ironically, I also believe that getting CD may end up being one of the best things that could have happened to me. Why? Because if not for CD I would not have embarked on a “rest of my life” health journey that I now find myself on. My eating habits have completely changed for the better even though you would have never thought that I wasn’t eating well as I have always been thin and active (especially active in lifting weights). Also, my stress levels are lower than ever due in large part to the stress reduction techniques I have learned on the DRP. I believe the combination of eating right and employing stress reduction techniques are the reasons why I have significantly reduced my blood pressure, as one year ago my blood pressure was consistently around 145/80 and now it is consistently around 125/75.
My journey is far from over, but I am getting better and improving every day. Thank you, Dr Farias and everyone on the DRP.
Scott Brooks