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History of our treatment struggles

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
jerryb
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History of our treatment struggles

Postby jerryb » Sat Jan 11, 2020 8:29 pm

TWENTY TWO MONTHS INTO THE JOURNEY, a.k.a. “ It was the most cruciferous of years, it was the least cruciferous of years.”
I am going to recount our journey in trying to help my wife battle and, hopefully, defeat her descent into Alzeimers disease. One month before our 50th anniversary in April of 2018, my wife volunteered to stop driving and clearly acknowledged her increasing problems with memory and organizing her life.
I became the chef and meal organizer and adjunct memory for her. Shortly after I found Dr. Bredesen’s book, The End of Alzheimer’s and by the end of August , my wife was on the protocol via a medical practitioner in Toronto.
At 78, my wife had for years been exercising daily and eating extremely well. Our diet was more finely tuned by the protocol: no dairy and gluten and an increasing emphasis on Cruciferous vegetables in an attempt to reach low level ketosis. (Used exogenous ketones for months to help but do not think she was ever in ongoing regular low levels of ketosis.)
COMPLICATIONS : my wife had for several years suffered from IBS - constipation type. We were treating this with Restoralax and diet but not having total real improvement.
MAJOR COMPLICATIONS: on December 30, 2018, she had a bad reaction to something in the Bredesen protocol. It could have been a supplement or the female hormones she was being prescribed but I think the most likely culprit was the fourth of four “mild” introductory I.V. Chelation treatments involving D.M.S.A. She had swelling in her legs, extreme lethargy, some hair loss and more stomach upset. After the extreme symptoms were resolved, the G.P. tried to ease back on laxatives to see if her body would reset. After a trip to Emergency and the use of several other laxatives, that crisis passed. G.I. Dr. advised on standard constipation routines and referred her for SIBO testing , which showed as positive. I happened to hear about Atrantil and began her on that. She continues on maintenance dose of this supplement but the result on her constipation has been amazing. There has been none for nine months. However the SIBO has continued. Working with a Naturopath, she has been treated for the first two regular types of SIBO, but with no results. We seem to have zeroed in on the diagnosis as SIBO Type 3: Hydrogen Sulfide. We are still fine tuning the supplements after six weeks of this diagnosis but may be beginning to have some results.
Diet has changed significantly from cruciferous veggies very prominent in early phases of treatment to currently no cruciferous nor garlic nor onions because of the sulphur content. Sulphur is in everything, especially protein, and guidelines on the Internet are poor so we have to wing it often.
MEANWHILE back at the Alzheimer’s treatment: the Geriatric Psychiatrist, who has been treating my wife throughout all of this, suggested Galantamine after we had to give up the Bredesen protocol. My wife seems to be responding well to this drug. Memory is a bit better but her ability to focus is a lot better and she does more household chores on a daily basis. She is more able to read an occasional newspaper article after no reading for months. Spelling has improved and she shows more confidence in her own note keeping and she has begun playing the piano again. Mood is improved and I was stunned when she actually laughed in a phone conversation with me, a few weeks ago. She is more open to social contacts. She is engaging in more of the normal verbal tit for tat that I suspect most couples engage in.
Another development is that she has gained back much of the weight she had lost going from under 100 to 110.
Many times during the past year, I have reflected on and researched the gut - brain interplay. One aspect we have been thwarted in addressing is my wife’s apparently high toxicity readings ( especially Mercury and Cadmium ) according to the Bredesen testing. I had begun Chlorella and Cilantro to address this issue but the Naturopath thinks, and I agree, that I was making no progress on this issue because of my wife’s ongoing gut issues. I felt gut problems were part of the reason that we did not achieve consistent ketone readings despite diet and exogenous ketones.
One sidelight of our journey is my wife’s insight into her condition. I have a friend whose wife has no insight and she resists help and acts as if she has no problems. My wife knows both her parents ended up in hospital or nursing care due to dementia. I was surprised that she has only one gene for Apoe4. She easily gets depressed and frightened in realizing how much her functioning has slipped. Gets angry at herself for not being able to do more and gets angry at me for being able to still function. Very often, however, she thanks me for all I am doing. Some irritation pops up at me having to remind her to take meds or stay on target in terms of schedule. I feel grateful that we are having this more normal period, likely due to Galantamine. For many months , her appetite and her sleep have been great. She is often lacking in energy and takes one or two naps despite sleeping for nine hours. I have wondered if this is result of condition or could be due to SIBO, which correlates very highly with chronic fatigue syndrome. I could well imagine that 22 months into our journey , my wife could have been much lower in functioning and putting much more strain on me as primary caregiver.
Winter is difficult because there is not much golfing in Canadian snow, and I have not manufactured many activities which would justify bringing in my “Godsend”, the lady in my condo building who looks after my wife and does some cooking when i go out for more than an hour.
I pray that my wife’s SIBO will soon resolve so that we can focus simply on cognitive issues and begin to address the metal toxicity. Would appreciate hearing from other caretakers regarding similarities and differences in your journeys. JerryB

Starfish77
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Re: History of our treatment struggles

Postby Starfish77 » Sat Jan 11, 2020 11:16 pm

JerryB, what an amazing, caring,partner you are. Your wife is so fortunate to have such a good husband who is so loving and so resourceful in working to find the best solutions to the many aspects of this disease. I'm not a caretaker myself. I'm the almost 83 year old e4/e4 that might be needing that care myself someday. If I do need that care, I can only hope that I would have even a portion of the outstanding care and attention to every aspect that you have been providing for your much loved wife. We are honored to have you with us.
Starfish

NF52
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Re: History of our treatment struggles

Postby NF52 » Sun Jan 12, 2020 12:40 pm

jerryb wrote:TWENTY TWO MONTHS INTO THE JOURNEY, a.k.a. “ It was the most cruciferous of years, it was the least cruciferous of years.”...I feel grateful that we are having this more normal period, likely due to Galantamine. For many months , her appetite and her sleep have been great...
Winter is difficult because there is not much golfing in Canadian snow, and I have not manufactured many activities which would justify bringing in my “Godsend”, the lady in my condo building who looks after my wife and does some cooking when i go out for more than an hour... JerryB
starfish77 wrote:JerryB, what an amazing, caring,partner you are. Your wife is so fortunate to have such a good husband who is so loving and so resourceful in working to find the best solutions to the many aspects of this disease. I'm not a caretaker myself. I'm the almost 83 year old e4/e4 that might be needing that care myself someday. If I do need that care, I can only hope that I would have even a portion of the outstanding care and attention to every aspect that you have been providing for your much loved wife. We are honored to have you with us.

Jerry, I heartily endorse Starfish77's post. To paraphrase her, I am the almost 40-year married, almost 68-year old who ten years from now at 50 years of marriage and age 78, could be asking my husband to assume the same roles that you have assumed. We certainly talk about that possibility. Like you, he has a dry sense of humor (and is a great fan of Dickens).

So as that wife of the future, I want to gently suggest that you set up a weekly (at least) time with your "Godsend" neighbor to spend a few hours with your wife. They may want to play an easy card or board game, talk about who is in old photo albums, watch a favorite musical on TV, or cook together. Meanwhile, you can take a much-needed appointment with nature and friends--a trip to a local park with well-plowed walking trails, or a time for a coffee with former colleagues. Your wife's improvement will not be affected by these breaks, and your immune system and emotional resilience will be bolstered.

I hope that your wife's path is like my mother's (she was probably also a 3/4, as I am a 4/4): slow, with long plateaus, and a lessened impatience with herself as time went on, combined with a deep appreciation of others, spoken many times a day. A few weeks before her death at age 86 from complications of congestive heart failure, she knew the end was near and said "I will cherish the wonderful life I've had." I am confident that your lovely wife is thinking that as well. Wishing both of you a year of finding reasons to laugh and enjoy those Canadian seasons.
4/4 and still an optimist!


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