Bottom line up front: I think we are not where we want to be, but we are where we are going to be.
Summary: The current medical situation and challenges of my enigmatic condition. What we know, what we don’t know and what we would like to know. My abilities and status change daily and can be very volatile, changing from walking without a cane to being carried to a wheelchair, sometimes within minutes.
Pain: I would like to declare that pain has been brought under control. This, in large, is due to our discovery of a mix of medications that I can take which holds the progression of symptoms of increased rigidity at bay. The cocktail helps prevent the muscles from injuring themselves. The progression of spasticity is not stopped, and continues to last between 36 and 96 hours. However, the effects are lessened. For this, I am very grateful. Prior to the introduction of the cocktail, the symptoms were extreme. I would be at level 9+ pain, with spasms violent enough to pull entire muscle groups for a number of days. With the cocktail, I feel like my body wants to spasm, but can’t. It is a very strange sensation and I don’t have a better description for it.
Spasms: These continue. Occasionally, I will have a full-body spasm. However, with the increased muscle healing time, I can now feel that my body seems to have a consistent series of minor spasms. When I sit still, I can feel them. When I am typing at the computer, watching TV, sitting in a pew, or just laying down, trying to sleep. My muscles are consistently firing off. They generally progress to an internal tremble, then twitching, then full spasms, cramps and contortions of the muscles. I thought, for a while, that my eye was twitching. After paying a closer attention to my body, I realized that my lower neck muscles were firing off and my whole head was twitching, ever so slightly.
Muscle Strength and Coordination: This varies wildly. When I am slightly rigid, I have control. When I’m excessively rigid or when I am soft, I have almost no control. When things are ramping up, I hurry and do things I’ve been wanting to do. If things progress normally, I usually have between 45 minutes to two hours of increased coordination and strength before things degrade rapidly with severe consequences. When I take this approach, I usually end up in a wheelchair for two or three days. However, I take respite in the fact that I got something done that I’ve been meaning to do.
Medications: I’m taking in excess of 20 pills a day. This is in addition to supplements, my Intrathecal Baclofen and doesn’t include the medications in my emergency cocktail. The balance was hard to achieve and not one I care to upset. I appreciate all the well-wishes and suggestions about CBD therapy and potential qualifications for medical cannabis. However, pain is no longer the major issue. Stabilizing the neural activity in my spinal column is the focus along with fine tuning the efficacy of the current medications. Self-medication with non-prescription medications is not something I can do at the moment. I occasionally loose my cognitive abilities and have to discuss decisions with my wife, before taking actions. Whatever I put in my body, I want a doctor behind it that I am paying for, so that I have a legal recourse should things turn bad. The medications I take can stop, and have stopped me from breathing. Critical Care is not a nice place to spend a week of your time. The nurses are nice, after they realize you are spasming and not fighting the restraints.
Charting: I have begun charting my vitals and other self-assessments no less than three times a day. The general frequency is morning, noon and evening along with any other significant event during the day. I have designed a web-accessible chart behind strong security precautions, limiting access to me alone. Hopefully, this will provide us a bulk of useful information to decide where we go from here. My blood pressure and heart rate is high. This is concerning. My cognitive and memory skills are not stable. I have a paper notebook that I write everything in. I still forget things.
Abilities: Walking is of limited distance. However, there are times when I can walk around the block with a cane. Standing still is a disaster and will cause my legs to cramp or spasm within minutes. Driving is limited to trips lasting less than fifteen minutes. After a short time in a vehicle, my neurons start firing and bad things happen quickly. I only drive on single-destination trips within a few miles of my home and only when I have someone available to come and pick me up in the case that my legs give out. I can type a bit. This, in part is because I have made a very ergonomic existence in front of my computer. I have a curved keyboard at a slant and my elbows rest on the arms of an executive captain’s chair. However, when things start spasming, or when my osteoarthritis kicks up, then I can no longer type.
Diagnosis: Issues related to idiopathic extreme spasticity, potentially of genetic origin.
Questions we want to know:
- Is this progressive?
- What is the effect on the heart?
- Chances for cardiac arrest or stroke?
- What is the deal with the decline in cognitive abilities?
This is where we are. I’ve tried to be thorough. I think we have. My spirits are high and I have nearly completely accepted my position in life. I am glad that I purchased a server so that I can work on Internet communications when I can. I’m building out JayCTheriot.Com Enterprises to be quite robust. The system is already considerably more dependable than I am.
I do long to travel. However, the amount of pain and necessary rehabilitation caused by the vibration of vehicles is prohibitive.
It is into the future, that we go, with God’s grace.
Jay C. “Jazzy_J” Theriot