#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
What we know, what we don’t know, what we wish we knew.
It’s been a while since my last “in-progress update” and much has been discovered and much remains to be discovered.
What’s in a Name?
The biggest achievement is in settling on a name for this disorder. The “official” diagnosis will likely never be made; however, my neurologist concludes this thief is a variant of Kennedy’s Disease (SBMA). I have continued my research on KD and can point to a specific late article written on the matter: https://jnnp.bmj.com/content/89/8/808. My symptoms match the article line for line.
We have not reaped significant benefits from this revelation, but I now know how to target my research.
Spasm fighting successes and limitations
We have developed a method of terminating spasms and named it the Abort! Protocol. However, the implementation of Abort! comes with a price and has definite limitations. Its use is a liberator and a wolf at the same time.
Successes of the Abort! Protocol:
- Takes about 15 minutes to stop significant muscle spasms.
- Consists of commercially available supplements.
- Is based on a protocol used by power-lifting professionals.
Limitations of the Abort! Protocol:
- Does not prevent spasticity from increasing to dramatic levels.
- Does not prevent muscles from being damaged from light to severe spasms. However, it does lessen the damage.
- Masks the damage done to the muscle providing the patient with a false sense of wellness.
- Is far from clinically proven and thus may have many foreboding and elusive consequences.
I see using the Abort! Protocol in the future for two callings:
- Disrupting the cycle of events. The “lightning spasms” are per se, incredibly painful and disheartening. Anything that can be done to kill those damn things is worth its weight in gold.
- Enabling me to attend a social event, such as a Chamber of Commerce event, watching my daughter perform on the field or attending a religious service.
A daily implementation is not wise, as it gives you a sense of false-wellness while you are doing more harm to your body as time progresses. I am going to self-impose a 1:2 or 1:3 use:recovery ratio in my implementation of the Abort! Protocol. A small bad for normal people equates to a huge bad for myself, as my wife so duly reminded me. I love her. She is a source of strength for me that I can’t see living without.
Ability versus Limitations
What a dichotomous relationship! Both are on the increase.
- Driving is on the increase
- Social event attendance is on the increase
- Independence is on a very slow slope of an increase — due to the ability of my disorder to take me down in less than twenty-five minutes, my independence is severely limited. I don’t go off-grid for more than fifteen minutes at a time. We use the smartphone application Life360 to provide us with constant location services. The ability for my wife to know my location is for my own good. My ability to see her location is for my peace of mind. I sometimes get very scared in an event. If I see that she is making her way home, I don’t call. I know my knight is coming.
- Self-maintenance of personal hygiene is increasing. I can shave more often and standing showers seem to be the thing. Using a chair in the shower introduces muscle manipulations that cause latent damage. This initiates a series of events that cause a downfall later. Standing showers with special tools allows me to completely accomplish the task and dry off the fastest and with least amount of damage. Showering remains an intensive event, but we have identified the least-damaging method.
- Mental focus is increasing. I am thinking considerably more clearly. Execution is problematic. If I was a noble and had a squire, I could really get things done.
- Driving is only capable for local trips of less than fifteen minutes in one direction. An extended stay may require a ride home and abandonment of my vehicle with later retrieval.
- Neuropathy is on a grand increase. I am hoping this is a matter of perspective. I have lessened the amount of time which I am in pain levels greater than 6/10. I am hoping this is the reason I am recognizing an increase in the neuropathic symptoms. My fingers are numb. The left side of my tongue is numb. Ghosts are on a significant rise. I generally have a ghost sensation at some random location on my body at any given time.
- Self injuries are on the rise. Biting my tongue is the greatest increase.
- Muscle damage and fatigue are on the rise. We are making valiant efforts to stave off muscle atrophy, I feel we are failing.
- Internal tremors are here to stay. In the past they were an occasional aggravation. Currently, they are with me nearly all the time. I concede I must get used to them. I don’t believe they indicate anything. The only definitive time I don’t have them is during an event. I may go short periods without having them. However, I have accepted that they are a part of my makeup and are here to stay.
- Typing is taking a hit. I’m working on voice recognition. I’ve purchased a version of Dragon Dictate and it is working at an acceptable level.
- Handwriting is at a premium. I can see it fading. I am handwriting as much as I can as to prolong the departure of this ability. I do like writing with my quill pens.
- Feeding myself. I am looking into purchasing fat-handled eating utensils as operating traditional utensils are about 75% of the time a difficulty.
Spirituality and Personal Well-Being
I am blessed to be held by some of the most wonderful people in the planet. In a serious state of irony is that two of the most my most influential spiritually uplifting people are atheists. They hold me in my spirituality and don’t let me slide. I don’t know if they are doing this purposefully, although, I suspect this is a willing and skillful effort they are independently making. They respect my belief structure as I respect theirs. Amazing in this day and age that people will show respect for one another.
I cried after receiving Communion, in Church, under my own effort. My friend caught me and made sure they were tears of joy, not sadness.
After serious discussions with my wife and counselor, we have extended my counseling visits from twice- to once-a-month. The reason for once-a-month visits is that I am scared of the future and its wary landscape of the unknowns. I am fine now. But, what about the next damning revelation. I don’t know if I, personally, am strong enough to deal with it. Thus, I am keeping my counselor “on the payroll” so-to-speak. She is another amazing woman that I can’t imagine the future without.
I have accepted the bulk of my blood-relatives do not accept the severity of what I am going through and likely never will. More’s the pity on them. As you can tell by the number of personalities I have mentioned in this summary, I am not in short supply of support people. I’ve only been able to slip in a few. There are so many more of them.
I would say my personal and mental well-being is at the highest point in the last two, or more, years. I feel we are settling in for the long haul.
What we don’t know
- What is happening to my liver? The number of my medications are definitely damaging my liver. It is a trade-off. A trade-off which will eventually lead to my death. I had the honor of watching my father-in-law brave it to the very end as he died from liver damage. I even found the name of it: NAFLD – Non-alcoholic fatty-liver disease. 8:15 pm, December 31st was his TOD that I gave hospice when they retrieved him. It is the only time I officially called the TOD on someone. I don’t wish to do it again. I only hope the person that does this for me is a member of my family. As I continue to grieve over his loss, now for several years, I retain that what I did was the highest of honors.
- Handicap accessible locations nearby. I wish there was an on-line listing of accommodations for each location. Knowing the layout of a place before making the trip considerably improves my enjoyment of the trip. The lack of information generates anxiety and can cause resources to be expended with little or no return on investment. Resources are rarely money. Energy, effort and planning are far more valuable than the $50-$100 spent on an outing. I wish companies would understand this and advertise this. Access is not universal, nor are the needs of individuals with disabilities. In this case, knowing is way more than half the battle. Often, it is the battle.
What we wish we knew
A good method to travel. I want to see and experience things beyond my walls and my monitors. Travel will dissolve my prison.
- Planes – out. Too difficult to maneuver and very expensive.
- Trains – out. Vibrations trigger severe spasms…need I say more? Eighteen or more hours of severe vibrations is not a real good thing.
- Automobiles – questionable. The jury is out on this one. It requires a day to waste between arrival and actually doing things.
- Cruise – questionable. We are likely to test this one out. There are numerous advertised accommodations for the handicapped. I like that we can catch a ship about an hour away from home and there is downtime to recover betwixt excursions. The failing point is scheduling.
Who knows? The “Now” is giving me more than ample time to reflect. I realize that if I ever am able to re-enter the workforce, with my knowledge, skills and attributes, I will be a force in this locale. I have performed operations in large scale that many people have failed or not even thought possible in the IT world. I have a strong knowledge base and I continue to grow with webinars and experimentation. May God help my competitors if I am ever released to the world again. LOL. I’m not being arrogant at all… not me.
I am watching my photography skills improve. I have an eye for the minute and the massive and like to play with depth-of-field. My limitation is my body and my composition abilities.
It gives me considerable pleasure to be give people joy with my photos.
What is in the future? Happiness. Oh, wait. Happiness is here now.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.