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Friday, December 15, 2023

Can too much good be bad and too much bad be good

FSHD can often be a guessing game. Particularly a couple decades ago when research hadn't yet advanced. Now we have more information, more real stories, more research and more possibility.

But with new knowledge comes new questions. 

There is a continuum and as the condition progresses you change your place on the continuum. But often, the advice doesn't change and it should.

As you can tell from previous blog posts there is a greater belief an individual can change the outcome of the disease themselves. Optism, confidence and a bit of bravado creates a combination that drives the individual to feel like they have the secret. The can change the game.

Usually this includes supplements, exercise, holistic approaches, Ayurveda, chinese medicine, stem cell treatment. Anything that offers a glimmer of hope, we open our wallets, focus and channel our energy and ambition to work on stopping this monster.

Outside of the fact in can drain your wallet, it gives you something to do and puts some control in your hands.

But it's already written, most of it is written. While exercise, nutrition and many of these approaches can help your overall health you have no idea what the long term effects will be. This is something ever present when you hit the realization you've done everything in earnest and the monster is still at work.

At this point, you wonder if continuing exercise, supplements and everything else is really causing more damage. Not only to the body but to the mind. Crushing hope is one of the most damaging things.

I'm at this point. I've lost the ability to do simple tasks. And other 'easy' tasks feel like climbing a mountain. By this point, I'm in tune with my body. Getting out of bed uses all my weak muscles and I need ligaments and tendons and joints to work extra hard. It feels more harmful than helpful. Some researchers agree. There isn't enough research to make it definitive.

I'm moving more into preservation of the physical body and nurturing the spirit. More time in meditation and prayer to keep my stress low and less guilt about not doing a regular workout routine. I'm keeping it to range of motion stretching with active assist.