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Progressing fast
swimchick0425
Posted: Tuesday, September 3, 2019 8:55 AM
Joined: 8/16/2019
Posts: 11


My LO got diagnosed at age 54 and she seems to be progressing very fast. I cant get her to neurologist till Oct-Nov to confirm, but by her symtpoms she is at the end of stage 5 and beginning of stage 6. 

She just seems to be moving very fast. Does any one have an advice on this aspect? 

I have a feeling we may have to put her into a living facility because she has gotten bad at night with the constantly waking up and sundowning. 

Any help is appreciated. Thank you!


HowDoYouDeal
Posted: Tuesday, September 3, 2019 11:36 AM
Joined: 2/17/2019
Posts: 193


Hi swimchick,

I would love to be able to give you first hand experience, but all I care share is the results of a year of very intense fear-driven research.

More and more studies are showing that indoor light is not helpful to people with  Sundowning, they need to be exposed to bright light from the sun, or the equivalent to it. Its much the same advice/prescription as give to people experiencing Seasonal Affected disorder.

 

There's also the clinical trials on  40Hz pulsed light therapy trials, and lamps etc.https://www.clinicaltrials.gov/ct2/results?cond=Alzheimer+Disease&term=light&cntry=&state=&city=&dist=&Search=Search

 

https://www.lumie.com/blogs/quick-guides/6302494-light-therapy-and-alzheimers-disease

A blurb from the site above

How light therapy can help

The combination of damaged nerve pathways caused by Alzheimer's disease and normal deterioration of the eyes due to ageing, means that levels of light (especially indoors) are not usually sufficient to signal that it is daytime. If the internal body clock is not tuned in to the usual daily pattern, this affects not only the wake-up process but also the activity and sleep cycles that come into force in the evening.

There are a growing number of studies to show that better and brighter lighting can help improve sundowning behaviour and reduce sleep/wake disturbances, particularly in the most severe cases. Morning sessions in front of a bright light can be particularly effective e.g. using 2,000lux lights for an hour or so and improving overall lighting conditions also had positive effects.

There is also some evidence to show that dawn.dust simulators like Bodyclock can be helpful in re-aligning the body clock to promote a better sleep/activity cycle.

 

I used clinicaltrials.gov to know what's up and coming in research, I like the light therapy idea because aside from being in a lot of trials, these lights already exist and can be bought on ebay etc.  Feel free to message me for help navigating.


HowDoYouDeal
Posted: Tuesday, September 3, 2019 11:58 AM
Joined: 2/17/2019
Posts: 193


Have a look at the writing of Lane Simonian for first hand experience using aromatherapy, and Larry-the-runner for an off-label asthma drug that helped him tremendously.

  We tend to write on the clinical trial page when we see something new or interesting.

There's a best health diet, as well as there are foods that have anti-inflammatory properties.

Also any naturopath will suggest you have at least two weeks of a food and symptom diary before you go see them.

-If you believe in the inflammation theory of AD, an infection of any kind, be it Yeast, Gum Disease or the common cold can make dementia symptoms suddenly worse, but symptoms can decrease again if the infection is treated.

The bringing Gamma Back experiments suggest that as AD patients progressively lose the ability to get deep restorative sleep, the natural 40Hz brain wave that 'washes out' amyloid plaque is also failing. At a certain point the cumulative amyloid burden triggers tau tangles, which triggers further decline.

There are some early studies showing that both 40Hz Pulsed light therapy and Focused Ultrasound reduce amyloid plaque, and humans have reported improvements, measured both by quality of life, and mental tests.

Depending on where you live and your L.O.'s stats, they might qualify to take part in a clinical trial.

While research is in the early-stages, and while large scale, 3rd stage human results won't be posted until 2020, there are non-medical devices that can be purchased online now.  

 If you visit clinicaltrials.gov you will see trends in what is being researched.

 If the same idea is being trialed by more than one company, has positive results and linked articles, its a hint that they are on to something.

 For me, Red light therapy, NearInfraRed light therapy,  40Hz pulsed light therapy and MRI Focused Ultrasound all fit in that category.


SunnyBeBe
Posted: Tuesday, September 3, 2019 1:48 PM
Joined: 10/9/2014
Posts: 704


swimchick0425 wrote:

My LO got diagnosed at age 54 and she seems to be progressing very fast. I cant get her to neurologist till Oct-Nov to confirm, but by her symtpoms she is at the end of stage 5 and beginning of stage 6. 

She just seems to be moving very fast. Does any one have an advice on this aspect? 

I have a feeling we may have to put her into a living facility because she has gotten bad at night with the constantly waking up and sundowning. 

Any help is appreciated. Thank you!

I'm not sure what kind of diagnosis she may have so far, but, have you read anything about Rapidly Progressing Dementias?  I read a lot about the diseases that can cause them, when my LO was first diagnosed, because, she was rather young (62) and went from running her own household, to needing assistance with all daily activities, double incontinent, wheelchair bound within a few months.  It was really shocking. As it turned out, she had Vascular Dementia, possibly mixed with AD, and her progression did level out and further decline was not observed until over a year later. There is a lot available online, but, it can be confusing, imo. I hope you can get more info and your questions answered with the upcoming doctor appointments. 

alz+
Posted: Tuesday, September 3, 2019 2:16 PM
Joined: 9/12/2013
Posts: 3534


look for videos on B12 deficiency.

My husband was doing incredibly weird things and tripping, forgetting things, mistaken about reality etc and it went on with him declining for over a year. It turned out that his B12 levels had crashed - possibly from anesthetic during long dental procedure.

I use the liquid sublingual B12 Complex, results are within hours or days, costs $6 and available at drugstores.

Since that happened have found people on Warfarin or other blood thinners may benefit from same B12 Complex drops.

For me CBD oil has given me years back from ALZ, it works within an hour, sublingual. Like I can't figure out what to do or if I can dress, take the oil and am dressed and walking dog an hour later. Also inexpensive, no bad side effects.

cheering you on



Steve3D
Posted: Tuesday, September 3, 2019 6:51 PM
Joined: 6/6/2018
Posts: 61


Swimchick0425, I highly recommend dropping into the Clinical Trial chats.  HowDoYouDeal, Lane, Larry the Runner, and others - all those folks do great research.  People like me mostly just clutter things up.  But, there's some good ideas out there. It's a long, dark trip you're on, and you need these people to help.  Good luck.

Steve


Cathyde
Posted: Monday, September 16, 2019 7:19 AM
Joined: 4/21/2019
Posts: 30


what is sun downing I can't sleep either I am 58 alone and scared I am sorry you are losing someone too
alz+
Posted: Monday, September 16, 2019 4:52 PM
Joined: 9/12/2013
Posts: 3534


Hi Cathyde -

sundowning is a term for late afternoon agitation, restlessness often with low light. People turn on lamps or sit in late sun if possible.

Not being able to sleep is very common and I had still wrestle with inability to sleep years after being diagnosed. What worked for me was

 to make sure I felt safe and secure where I was sleeping, good mattress, heavy blanket, favorite pillow etc

if I woke up at 2am I learned to just do something I relaxing -  read, listen to youtube, favorite podcasts, sewed a button, looked at stars, watched a movie. It never helped me to fight it or get upset about it.

sometimes eating something helped me go to back to sleep

a hot bath before bed sometimes helped

a dog that would sleep with me helped A Lot

I used cannabis and/or cbd oil (still do, work for me, no bad reactions)

* most helpful: make sure I get physically tired during day - rock hunting, gardening, walking, cleaning something, laundry, sweeping, shoveling, painting, dog walking...

*****

living alone with cognitive changes is draining, always in charge, the responsibilities of everything  -all hard on a person. There are good points to it too if you have outside support.

Stay open to finding someone to help you, you may have an old friend, cousin, neice or nephew, someone who needs a place to stay for awhile. You could both find out if it was good for both.

This year my adult children moved me after a winter alone where 2 neighbors helped me get food and stay alive. It was incredibly rough, could not do it again.

Others may have ideas on dealing with these things. Do you have a diagnosis? 

someone must have a information or advice for people living alone with cognitive problems. 

love and courage



LDDaughter
Posted: Wednesday, September 18, 2019 2:02 PM
Joined: 12/22/2011
Posts: 1047


Here's a list taken from several sources of things that contribute to dementia or cause dementia-like symptoms. Some are more well-known and common like B12 deficiency as another poster mentioned.  If your LO is suddenly worsening I wonder if there is an underlying medical condition going on?  Also important to look at any medications that might have side effects- sometimes too many meds causes a kind of toxic soup. 

Also as mentioned above, there are dietary and lifestyle approaches that may help- much of those successes are anedotal, but may be encouraging. Bredesen is one that has written about this. 

Medical conditions to rule out if memory and cognitive symptoms develop:

·B12 and B1 deficiencies can cause symptoms and can be reversed with supplementation treatment.

Thyroid & insulin disorders- can cause cognitive issues and reversed with treatment.

Low blood sugar levels, high or low sodium and calcium levels.

Infections such as urinary tract infections (UTI’s) may cause confusion or delirium. UTI’s with no symptoms other than a change of mental status are common in the elderly.

Depression

Normal Pressure Hydrocephalus (NPH)- an abnormal buildup of cerebrospinal fluid in the brain can cause dementia symptoms and can be reversed if diagnosed and treated early.

Head trauma, tumors and other brain disorders

Medication side effects and interactions**                                                                                              1. Antianxiety drugs
2. Cholesterol drugs
3. Anti-seizure drugs
4. Antidepressant drugs
5. Narcotic painkillers
6. Parkinson's drugs
7. Hypertension drugs
8. Sleeping aids
9. Incontinence drugs
10. Antihistamines

Lyme disease

Kidney and liver disease

Sleep disorders

Vestibular disorders

Cancer

http://www.jgmh.org/viewimage.asp?img=JGeriatrMentHealth_2015_2_1_30_161378_t1.jpg

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3038529/

https://www.brightfocus.org/alzheimers/article/medical-conditions-can-mimic-dementia

https://www.webmd.com/alzheimers/guide/diseases-like-alzheimers#3 

**https://www.aarp.org/health/drugs-supplements/info-2017/caution-these-10-drugs-can-cause-memory-loss.html


Oh Jayne
Posted: Saturday, September 21, 2019 10:35 PM
Joined: 11/3/2016
Posts: 4


My husband was diagnosed about 3 years ago when he was 57. We knew something was wrong when he couldn't remember where things were while driving. He passed over almost 2 months ago at the age of 60. I still think he's going to walk in the door and tell me it was just a bad dream. I miss him so much! If you have any questions you think I can help you with just let me know.
Cathyde
Posted: Sunday, September 22, 2019 12:26 AM
Joined: 4/21/2019
Posts: 30


Thank you for responding , my diagnoses is posterial cortical atrophy. a rapid progressive dementia and I have sundown get just didn't have a name for it . I am so lonely and very depressed I need socialization I am very lonely and depressed, I worked all my life and had a great well paying job and with no salt at my job site. I fell on ice and had hip and neck surgery  I kept telling the dr's something wasn't right physical therapist noted disoriented to place and time but no one looked at my brain and when they did 2 years later it was to late dr and neurologist kept saying it was anxiety I had insomnia for 8 months I slept 2 to 4 hours at most sometimes up 20 to 30 hours with no sleep I am very disapointed with my dr of 15 years and the neuro dr's who without testing jumped on the anxiety wagon and dismissed me stating I need to see a psychiatrist 


Cathyde
Posted: Sunday, September 22, 2019 7:46 PM
Joined: 4/21/2019
Posts: 30


I paid $50 for cbd and it did not help is there a certain kind I should try
Cathyde
Posted: Sunday, September 22, 2019 7:49 PM
Joined: 4/21/2019
Posts: 30


thank you I do have it I am restless and bored no support groups around me no transit isolated and depressed
Cathyde
Posted: Sunday, September 22, 2019 7:55 PM
Joined: 4/21/2019
Posts: 30


can you send me clinical trials sites to my email I have trouble with long url is it ok bto share my email on this site cathy514@sbcglobal.net ...thank you
alz+
Posted: Tuesday, September 24, 2019 12:15 PM
Joined: 9/12/2013
Posts: 3534


website youtube channel for Project CBD information on CBD oil:

https://www.youtube.com/channel/UCUHCXAM7jMfSmncgZARA3wQ

 If you have a dispensary they ought to know what CBD  oils their customers are using for dementia.

People who use it do not FEEL anything. However if cognitive problems are tested that might give you a tip if it helps you or not.

My test was after taking oil I went upstairs and figured out an insurance claim math problem that had been causing me trouble for months. I could not believe it. Over next few days my ability to walk dog improved within 20 minutes of taking oil sublingually and holding under tongue for 60 seconds or more.

The Hemp oil sold everywhere is made from industrial or farming waste, I don't use that. I doubt it helps much.

I am not an authority on cannabis medicine and not prescribing it and I know there are a lot of people using cannabis and cbd oil who for some reason will not come forward here to discuss it. They private message me, or make a phone call or send email.

I don't want to be the sole representative for CBD oil here but I keep sharing what I find happening to me because I improved so rapidly and for so long. 

If it does not work it may indicate a different type of source for cognitive problems. 

Day time I use high CBD low THC blend. I take high THC oil at night.

It has to absorb under tongue. 

The dispensary I use now has home delivery, a bottle is a month supply for me and they deliver no charge. Cost is about $35 for bottle. I recently added high THC for morning anxiety or afternoon shakes and anxiety.

The dispensary keeps a record of 100s people who report positive/negative effects to help people with different conditions make a good choice in trying an oil, any of them will work I think but some blends might work better for certain people.

Must be clean, pure cannabis oil. My original oil was like tar, made by local tribe who gave this oil to people with cancer. It increased my physical abilities too, I could walk standing up straight after oil which gave me time to build strength and cognitive issues improved dramatically. 

My test if it worked would be to try to memorize 5 numbers. Then take the oil and try same test. Or when I could not get out of bed, take oil and would be out of bed in 10 minutes getting dressed without staring at clothing for a half hour.

Wish I could be of more help. Research online for people comments on using oil for dementia, Parkinson's.

The effect is like in this video of it's use in Parkinson's https://www.youtube.com/user/RidewithLarry

love and courage




alz+
Posted: Friday, September 27, 2019 5:12 PM
Joined: 9/12/2013
Posts: 3534


cathyde -

Posterior cortical atrophy may be different in some ways from ALZ or Lewy bodies. I took this info from the alz website

"The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with posterior cortical atrophy experience anxiety, possibly because they know something is wrong. In the early stages of posterior cortical atrophy, most people do not have markedly reduced memory, but memory can be affected in later stages." alz.org

...

Does this seem like your experience with symptoms? Are you living alone? We need to get some solutions for people going through this alone. The stress is really bad - I lived 7 months on my own over last winter and it was way too rough. We need ideas on how to get through this while living alone.


RIM
Posted: Saturday, September 28, 2019 6:14 AM
Joined: 5/22/2019
Posts: 18


This time last year, my father started with memory loss, then confusion, then hallucinations.  His declined was very fast paced, happening over week(s),  symptomatic of rapidly progressing dementia (RPD).    Doctor(s) dx him with dementia, then Alz.  I sensed something was causing his decline.  Fortunately,  I happened to see him sleeping, waking up every 5 minutes, at times gasping for air.  When I saw this, I knew it was the source of his mental decline.   I was right.  Symptoms reversed with CPAP therapy,  coupled with B vitamins and nightly melatonin.  

alz+
Posted: Saturday, September 28, 2019 10:37 AM
Joined: 9/12/2013
Posts: 3534


RIM - that is important story and your Dad recovered? wow.

The doctors who missed low B12 in my ex husband and the one who didn't understand connection between anemia and low Bs with other ex husband ( ) didn't know this was a medical basic 50 years ago. They no longer have B12 to inject in their offices and they don't check levels on blood tests.

you and I were lucky enough to wonder past what label or diagnosis was made and for $7 a bottle with no toxic or side effects except function returns. My daughter had tremors and her doctor upped her anti anxiety meds. They stopped 2 days after starting B12 and she could cut back the other stuff. She came back to life in a lot of ways.

sleep apnea - if you live alone who would know? Well done. Question everything.