allright. it’s been a while. a lot has gone on and i am terrible with “paperwork”.
ok. so have been attempting to test the strains i ran over the summer on abuela. we have NOT been able to collect any confirmed or useful data on the testing because of the ever present urine infection(s). i have mentioned it in previous posts, but can’t stress enough how detrimental urine infections are for Alz/Dem patients. it hastens the decline without a doubt. no matter what else you’re doing, perfect food, suppliments, medications - everything else in the body can be tip top shape - but if you have a urine infection on board it will completely negate everything else and continue to hasten the decline.
so how do you prevent the urine infections? and how do you prevent urine infections in someone who is now wearing adult diapers 24/7 that is hyper sensitive to urine infections?
yeah… that’s a tough one. now, on top of all that, factor in the diarrhea in the diaper from the constant stream of antibiotics and you have the recipe for disaster.
steps we have taken:
- the first thing we tried to do was use desitin diaper rash cream front and back. seems to work for the babies, why not for abuela? the desitin helped to a small extent, but didn’t stop her from getting infections.
- we tried to change the diapers more often. the program she is on sends way more than needed, so we stepped up the frequencies of changes trying to keep clean surface(s). again. this helped a bit but didn’t prevent infections. there is still the issue of overnight… sitting in it till morning.
- we tried to increase the acidity of her pee to kill infections naturally. added in cranberry juices and apple cider vinegar to her tube feedings. unsure if this did anything. regardless have continued to do this as the last ER doc we saw recommended we continue on that path as a preventive measure.
he also told us that abuela is now completely “resistant” to some antibiotics… namely the ones the urologist has been prescribing for the last year… >:( (we TOLD/BEGGED him to switch it up so she didn’t become resistant… he ignored us, and now she is resistant.) - we have tried having her sleep overnight WITHOUT the diapers, by adding absorbent pads to the bed in lieu of the diapers. this always equals a messy morning cleanup, but … infection is worse… so…
- i installed a bidet on the toilet. this may be a game changer… we will see. it certainly helps wife clean abuela up when she has #2 accidents. bidet sprays both front and backsides. a whole lot easier that wrestling her mom into the shower for cleanup after every BR visit.
- we switched doctors and explained entire situation. this doctor has switched the antibiotics and will do not 1 but 2 cycles of differing antibiotics. the first was a 10 day cycle of the most hardcore stuff they have in non-IV form. that is now complete. so far, so good (knocks on wood).
the 2nd cycle of antibiotics is going to be a 1 month maintenance antibiotic at a lower dosage, but for longer period to ENSURE all the infection is destroyed.
the downside to this is that we are going to have to rebuild he gut flora that took us 1.5yrs to properly sort out and build up with an extremely strict diet (during the time period when she had no appetite no less - every spoonful was a battle. in a way i am grateful for the G-tube feeding. no more fighting. and she’s gaining weight back).
(please note: gut health is EXTREMELY important to Alz/Dem patients)
well, i suppose the rebuild will go a bit quicker this time. we know what she needs to eat and can much more easily feed her through the tube (without the fighting).
with the urine infections under control (for the time being) we started to take a deeper look at the Parkinsons symptoms. discussing things back and forth i made the observation that some of the symptoms showed up within the last 3 months and then some more disturbing symptoms showed up within the last 1-2 weeks. so what was the change? more discussing revealed that some of the medications and suppliments had changed.
so we pulled out ALL the medications and suppliments and started going through them one by one. reading ingredients and then doing some research online with each.
bottom line - you HAVE to do your own research. putting full faith and trust in pharmaceuticals and even some of the doctors will just burn you. i am not saying all are bad, but damn… they certainly make their share of mistakes… to our detriment.
we found 4 suppliments she was taking that were causing a bunch of her symptoms.
- one in particular “Prevagen” was prescribed by the author of the Alz/Dem book is actually CAUSING some of the symptoms and has warnings on the internet NOT to prescribe to Alz/Dem patients. WTF?!
- the others we found were new suppliments that the wife had recently read about and wanted to see if they helped… they were not.
one was causing tachycardia. heart rates of 110-130 while abuela was sleeping.
another was causing erratic blood pressure readings. mostly low while her heartbea was racing.
the last one was affecting her sleep - even with the GDP knockout juice.
since we have removed these suppliments, she has already showed improvements. heart rate and BP are back down to normal. a few other symptoms are lessening slowly, but very positive results taking her off.
again, pay attention to what they are giving your people. Doctor A doesn’t know what Doctor B or C are prescribing. YOU have to tell them. make sure they all work together properly and aren’t causing more harm than good. there are MANY out there that are doing that - causing harm because they should not be mixed.
it SUCKS that we have to do this extra work, but we have to do this extra work.
that’s all for now. hopefully we will get her stable again soon so i can resume testing strains (with better data).
) of bubba and infused it into 2oz of coconut oil. this mix seems to be the right range for abuela’s weight.
, he hadn’t heard of methy blue either and was very interested as has mother has dementia.
