My Greatest Fear

Hello Dazzle! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I want to talk about some of the fears that I struggle with in context of my prognosis. All of us with a chronic illness are fully aware that our condition is a life long state of being. For most of us, it also means that we are facing a future that promises less than desirable outcomes.

My greatest fear is developing dementia. I carry non-modifiable risk factors that make my risk for Lewy Body Dementia rather high. My grandmother had Lewy Body Dementia which increases my risk, just because I have a family member who had it. There is research that suggests those with ADHD are at a higher risk for Lewy Body Dementia. [1] However, a meta analysis of the research on this topic does challenge the conclusion. [2] Either way, I can’t change that I have a diagnosis of ADHD and that is currently considered a potential risk factor. Add onto that the risk that goes with some of the medications that I am taking (H1 antihistamine, H2 antihistamine and Sinemet) [3] [4] [5] and I feel like my risk for dementia is pretty high.

Most of my self identity and my ego are wrapped up in my cognitive abilities. The things that I enjoy as hobbies are intellectually driven. The purpose that I have found in life is based on my medical knowledge. What happens if all of that slips away from me? The idea is terrifying to me. This is the single greatest fear that I have. And I have also accepted that it is likely going to be a part of my life when I become older.

There are other things that are projected for my future that I am not looking forward to, absolutely. But the truth is that if I could make a deal to take on any one of those outcomes now to ensure that I never had dementia, I would do it. I would accept never walking again without hesitation if it meant keeping my mind intact. Increased pain? That does not scare me nearly as much as forgetting who I am. Constant uncontrolled movements is less scary then loosing hold of all the information that I have spent years working hard to learn and master.

Because I am so afraid of dementia, I am often asked why I continue to take the medications that I am taking. Well, because breathing is required for continued existence. Not taking the H1 and H2 antihistamines means letting my MCAS go uncontrolled. That means rolling the histamine dice. Anaphylaxis always come with the risk of dying. Preventing immediate death is more urgent then preventing the possibility of developing an adverse outcome from the medication that is keeping me alive. And the Sinemet? Well, that’s the small fry that has really low risk. Taking it really isn’t changing my odds of getting dementia much but is sure changes my quality of life in the right now. As always, it comes down to the risk vs benefit analysis.

The only other thing that I can do is keep my brain active and engaged. Constantly challenging myself to learn new things and to solve puzzles is a protective factor against dementia. That means that I’m helping to keep my brain healthy whenever I’m playing videogames. Then there are the usual things that you can do. Which is to say do the best to take good care of yourself by getting the best sleep possible, the best nutrition possible and by exercising as much as possible. Taking the best possible care of your meat boat is always a good idea if you want it to keep you afloat.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

Sources and Additional Reading

  1. Previous adult attention-deficit and hyperactivity disorder symptoms and risk of dementia with Lewy bodies: a case–control study
  2. ADHD and Neurodegenerative Disease Risk: A Critical Examination of the Evidence
  3. Cumulative Use of Strong Anticholinergics and Incident Dementia
  4. 3 Charts | Medications & Dementia Risk | Visualized Science
  5. Associations between Anticholinergic Burden and Adverse Health Outcomes in Parkinson Disease

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