an E4/E4 brain CAN recover

Alzheimer's, cardiovascular, and other chronic diseases; biomarkers, lifestyle, supplements, drugs, and health care.
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Stavia
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an E4/E4 brain CAN recover

Postby Stavia » Fri Aug 08, 2014 5:17 pm

This is not a sob story looking for sympathy, I'm really fine now, and actually a happy healthy person, but this is an n=1 story of E4/E4 significant brain recovery. It's to show that an E4/E4 brain CAN recover from significant insult.

Lilly said I should share it, so here goes. I have mentioned it in my introduction, here it is in detail:

Almost 8 years ago, defying gravity, I fell UP the stairs while running and hurled myself into the door frame. I was a very high achiever, holding multiple threads of work and home responsibilities. As an example it was 2 days after I had hosted a sit down dinner in my house for 30 people (self catered with some help from friends) and was working 50 hours a week. Crazy. Anyway, knocked myself out, huge gash on head. Actually went to sleep not too bad but woke up in a fog that lasted years. Had to give up my medical licence, couldn't process speech, dysphasic and dysarthric, couldn't use an ATM, dial a telephone number, read a paragraph, type a paragraph, had diplopia, left leg dragged behind me, kept falling and other bad deficits. Neuropsych testing not good. Gaps everywhere. Memory islands, stuff just didn't encode. Anyway in those days the neurology advice was to rest. I was only allowed to walk 20 mins from my front door and back a day. Could only talk for 20 mins to someone then I couldn't understand what they were saying. Had to have three sleeps a day. Told to sell my medical practice at the end of the first year because there was no longer any hope of significant cognitive improvement (which thank heavens I didn't do, I just wasn't ready to give up). Two awful dark years later, closely supervised by a team of head injury experts who were now saying this was the definitely all the recovery I was going to get (yay down to two sleeps a day :S ) and I just had to accept this reality, after falling yet again and breaking a couple ribs, I asked for and got a neurophysio assessment and programme for balance. I started walking on a treadmill holding on and watching my feet because if I couldn't see them I would fall. Six months of this my balance was improving and I noticed I could walk without watching my feet. I took my hands off the bar. At about a year I tried to run against advice...and omg I could for a few seconds and it felt wonderful....and noticed that I was getting cognitive gains. At that time there was the early evidence about BDNF and Iraq blast victims with TBI and exercise that my OT told me about because the professor doing this early research came to our country to talk to the TBI people. (I wasn't up to any internet searches lol). So I thought - well I need the balance, I have no idea what to do during the day when I'm not sleeping except play World of Warcraft and try and cook dinner and eat and cry, so what have I got to lose.

So I started running on the treadmill for 40 to 60 mins a day. Heart rate over 160/min. I started swimming a kilometer some days. I hired a personal trainer twice a week - still ongoing. That was the only intervention after 2 years of minimal improvement. Exercise. No supplements, no diet change, just daily exercise. At year three, I had started to get measurable cognitive and physical gains. By year five, I was back up to 95th to 99th centiles on full neuropsych testing and got my full medical licence back. I was able to work at my busy practice (built up obviously over about a year or two) 25 hours a week.

Around year four-five, I developed a sulphite allergy which caused anaphylaxis. So I was forced to clean up my diet which had been patchy at best. (I had obviously become overweight, initially lost 10kgs with the diet cleanup, recently dropped another 6kg with the E4/E4 diagnosis, plan to drop another 6kg). Fascinatingly I still continue to have cognitive and physical gains. I don't know how much of the continued gains are due to the ongoing exercise and how much is due to the added dietary changes. The diet has been very mainstream "healthy" in a Michael Pollan-like fashion(I'd say 20-25% protein (grass fed beef, lamb, local fish & shellfish, free range poultry/eggs), 20-25% fat, 50- 60% carbs (emphasis on veggies and fruit but including whole grains (bake my own bread) and legumes) zero sugar/sucrose, zero processed stuff for obvious reasons that anaphylaxis=death, no supplements) . My speech difficulties only come on if I am very tired. I can work 10 hours a day at my old breakneck speed. I don't need to jot down notes during a consultation any more, I can hold the threads in my head again. My physical and balance deficits are minor and still improving. My partner of 18 years in my practice says I am back as sharp as I was before. I don't need a prism in my specs any more. I can kick-box and not fall over. I am learning to play the piano. I've started learning a foreign language with a different alphabet. It's beyond belief...

The neurologists just shrug and say well done. They can't tell me what my brain did to recover so late after the injury. I guess it's a combination of a lot of complicated stuff and just dogged persistence. The details don't matter. But this experience has made me very hopeful that our brains possibly aren't as fragile as we fear. I'm hoping that sharing this will help your fears, as it has helped mine learning my E4/E4 status.
And I know without a doubt the obvious - exercise and a sensible diet - really, really, really help.

circular
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Re: an E4/E4 brain CAN recover

Postby circular » Fri Aug 08, 2014 5:43 pm

Stavia that gave me chills! What if Alzheimers patients were given much more exercise? The local memory care facility where I used to live had a heated pool their memory patients got in I think every day. It calmed them down at least, but I doubt there was as much an emphasis on exercise as there could be.

Just this morning air wondered again if exercise nullifies the downside of most any version of the healthy diets (ie unprocessed etc but of varying macro ratios).

Thanks for sharing that. An optimism boost for sure! And kudos to you!!!
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: an E4/E4 brain CAN recover

Postby sarahb12 » Fri Aug 08, 2014 6:23 pm

Wow, that just tells us how much they _don't_ know about brain recovery. Great job.....
E3/E4

Ski
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Re: an E4/E4 brain CAN recover

Postby Ski » Fri Aug 08, 2014 6:40 pm

What a great story Stavia, thanks for sharing. Great fighter spirit!!

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Julie G
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Re: an E4/E4 brain CAN recover

Postby Julie G » Fri Aug 08, 2014 7:51 pm

How generous of you to share your story, Stavia. I am in awe of your indomitable spirit. I had no idea of how severe your injury was. It speaks to your strength. You give me hope :D

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Re: an E4/E4 brain CAN recover

Postby RedNailz » Fri Aug 08, 2014 9:51 pm

Thank you for sharing! I really did not think E4s could come back from an injury like that!
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LanceS
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Re: an E4/E4 brain CAN recover

Postby LanceS » Fri Aug 08, 2014 9:55 pm

Stavia,

Thanks for sharing.

Worry about my brain. Have had a skull fracture, at least one other concussion, and a moderate stroke.

My brain still does wonderfully complex things. Linear stuff is a little rusty, but seems to work well when I push it. Recall of names, words is a little scary. Maybe it always has been, but with the injuries and insults, the fear and uncertainty increase that there may have been lasting damage getting worse. Used to be a guy who could hit a new town and remember routes, directions, orientations with visual recall after just one pass through. Sometimes I try to pull that recall when driving my kids to soccer or something when we go through rural roads I'm not familiar with but have been there before an I feel like I should get a flash recall, and its not there. Probably asking too much as rural scenery is not very distinctive, but it shakes your confidence.

Gives folks with TBI hope to hear stories like yours.

Thanks.

L

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Stavia
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Re: an E4/E4 brain CAN recover

Postby Stavia » Fri Aug 08, 2014 11:54 pm

Lance honey, my recovery accelerated when I stopped worrying about what I couldn't do as well as before. It was so much wasted energy. And this was my second injury - age 30 I had a serious car accident, base of skull and c-spine fracture with about 6 months concussion.
Keep plodding away. Prioritise sleep. Excercise. Find creative ways to build up weaker areas - I used knitting for hands, following opera librettos for speech, following recipes for sequencing, sudoku for short term memory etc. Gains are slow - took 6 months for effects of interventions to become apparent. But remember not to get upset if you slip up. Focus on the gains. Fear is your enemy. Belief that the brain is malleable and repairable is your friend. PM me if you want to skype sometime.

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Russ
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Re: an E4/E4 brain CAN recover

Postby Russ » Sat Aug 09, 2014 6:08 am

Stavia,

Inspring story - thanks for sharing! A grey example of how different neurological insults plausibly have the same roots and the same cures. Exercise and diet can indeed do wonders.

Will be very interested to hear if you ever do chose to play with ketosis, which seems to me to at least be an effective therapeutic tool if not an ongoing condition...
http://www.ncbi.nlm.nih.gov/pubmed/24721741

J Lipid Res. 2014 Apr 10. [Epub ahead of print]
The collective therapeutic potential of cerebral ketone metabolism in Traumatic Brain Injury.
Prins M1, Matsumoto J.
Author information

Abstract
The post-injury period of glucose metabolic depression is accompanied by adenosine triphosphate decreases, increased flux of glucose through the pentose phosphate pathway, free radical production, activation of poly adenosine diphosphate ribose polymerase via DNA damage and inhibition of glyceraldehyde dehydrogenase (a key glycolytic enzyme) via depletion of the cytosolic nicotinamide adenine dinucleotide pool. Under these post-brain injury conditions of impaired glycolytic metabolism, glucose becomes a less favorable energy substrate. Ketone bodies are the only known alternative to glucose for cerebral energy metabolism. Preclinical studies employing both pre-and post-injury implementation of the ketogenic diet have demonstrated improved structural and functional outcome in traumatic brain injury models, mild TBI/ concussion models, and spinal cord injury. Further clinical studies are required to determine the optimal method to induce cerebral ketone metabolism in the post-injury brain, and to validate the neuroprotective benefits of ketogenic therapy in humans.
Russ
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Re: an E4/E4 brain CAN recover

Postby Gilgamesh » Sat Aug 09, 2014 6:53 am

Crazy work deadline, took break to check in with my beloved apoe4.info and I see your story, Stavia, and must just say: Holy shit!! Amazing!!! You have really filled me with hope. I've been feeling I'm well into the Epsilon-4 Great Decline, and nothing is really working, ready to sign up for cryonics and hope the robots revive me in a hundred years -- what else can one do, I ask in desperation?? -- but voilà! Miracles happen.

Pardon my ebullition. Punch-drunk with sleep deprivation, but also, really: Amazing story!

GB


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