Staying Out of Trouble at Night

People with dementia often get into the most trouble at night if they escape from the bedroom while the caregiver is still sleeping. So, here are some ideas that might help.  If you sleep in the same room, you could place a doorstop under the door, which will create a ruckus when he/she tries to open it up. The doorstop we have has an alarm on it that you can turn off and on, depending on how deeply you sleep (less than $10). 

If you go to bed after, or wake up before, your loved one, or if you sleep in a separate room, then the problem is knowing whether he or she is up or not.  To solve this problem, I bought a wireless driveway alert (the one I bought is from Bunker Will and costs $15); it detects motion, so you would position the sensor under the bed or somewhere that won't pick up when he just rolls over, but rather when he gets up out of bed. The monitor can be in another room up to a couple hundred feet away. If the battery dies in one of the pieces, you won't get the alert. The batteries in our deivce need to be replaced every 4-6 weeks or so.

I also recently bought a night vision Infant Optics camera (about $100), so I can see if he is up and what he is doing when I am not in the room. It costs a little more for the night vision, but this works very well, and I decided it is worth it. I didn't know this existed until my niece was having a baby and had one on her registration list. It feels a little like spying but is intended to make sure he is safe and so is very reassuring.

I ordered all of these things at www.amazon.com. It is amazing what you can find on the internet these days!

Fourth Anniversary of Steve's Ketone Rebirth (May 21, 2012)

Yesterday, May 21, 2012, was the fourth anniversary of the day Steve started taking coconut oil to provide ketones as an alternative fuel to glucose for his brain, with very positive results.  He is now 62 years old and in his eleventh years of symptoms related to early onset Alzheimer's disease.  Much has happened in these four years, both setbacks and recoveries. Fortunately, we are in a recovery phase.  We have surprises all of the time that lead me to believe that everything he was is still in there, but he has a problem getting access to it.
I will post a point by point update in the near future.
In the meantime, here is a little bit of my funny old Steve coming out to visit yesterday:

ALS Patient two year update on coconut oil and magnesium chloride

This is an email I received from Butch Machlan who has familial ALS.  He has given me permission to post this in my blog:

April 13, 2012

To whom it may concern:

From: C. (Butch) Machlan

Subject: Coconut Oil and Magnesium Chloride Personal, Social Clinical Trial

Purpose: To Update June 5, 2011 status

Background:  On March 9^th 2008 I started a journal to track my ALS symptoms.  It was also when I started the diagnosis process, which ended in September 2008 with the official diagnosis of FALS.  In late 2009 I started taking coconut oil and magnesium chloride to see if they would have any affect on my symptoms.  After a little over one year of taking these two things, and having some positive changes I decided I needed to do a better job of tracking my symptoms.  So in February 2011 I started tracking my symptoms each month on a special form created from several ALS Web-pages and related sources. 

The original motivation for tracking my progression was to be able to compare my ALS progression with that of my mother’s so I could be prepared for each step in the process.  Mother died of ALS in 1986 after 8 years and the loss of all muscle functions including her ability speak.  For over a year her breathing was done by a respirator.  The last 2 to 3 months of her life her only method of communicating was by blinking and moving her eyes.  At the time of her death the doctors were adamant ALS could not be inherited.  Now we know they were wrong!

After having some positive changes due to adding coconut oil (CO) and magnesium chloride (MgCl) to my diet my motivation changed.  It is now to see if I can continue to get more improvements, and to continue recording my status in what one doctor called “a Personal, Social Clinical Trial.”   “Personal” and “Social” because it’s similar to a conventional clinical trial even though it is not sanctioned or requested by any medical or research professional, nor is it done for any company or organization.  It is done just for me to help document the “before CO & MgCl” and “during CO & MgCl” for myself, the doctors, and others who may be interested.  Unfortunately, my experience has confused the doctors because they, like many others, “know” there is currently nothing available anywhere to help people with ALS.  This includes approved medicines, supplements, voodoo medicines, etc.

Since some of my symptoms have improved the doctors have been saying I have a “form” of ALS called Benigh Monomelic Amyotrophy.  This form is very rare, only affects one area or muscle group, and normally affects younger people.  I’m a 64 year old American!  After doing some research I went back to the doctors and asked a few questions, such as What about my muscle’s increased size and strength?  and What about my age, race, etc.  They had no response.  So my conclusion is; this disease is the closest they can find to match my current symptoms, and they’ve ignored the changes listed below.  However, they do say “Keep doing whatever you’re doing,” and “See you next year.”  I plan to do both! 

Diet Details:  I started taking 4 oz’s of magnesium chloride on Sept. 15, 2009, and started taking 3 tbsp of coconut oil on Oct. 31, 2009.  On Dec. 4, 2009 I increased my daily intake of coconut oil to 6 tbsp.  On February 8, 2010 I increased it to 8 tbsp per day.  From January 28, 2011 until now I’ve been taking 9 tbsp of coconut oil, (with my meals) and 2 oz’s (1/8 cup) of magnesium chloride/water twice daily (100 gms MgCl per 3 liters pure water).  I’m not had any problems taking the coconut oil because I started slowly.  From some research I’ve found it is important to start with 1 to 3 tbsp per day.  The reason is most people’s digestive systems cannot tolerate more in the beginning, and coconut oil is anti-viral, anti-fugal, and anti-bacterial, among other things.  Some people will have terrible “die-off” reactions as the coconut oil begins to kill these micro-organisms.  They might mistakenly think they are allergic to coconut oil, but they need to just start a LOT more slowly.  Sometime even start with only 1 teaspoon a day with meals.  It is very important to mix the coconut oil with food, and not try to take it straight!!!

Coconut oil Massage:  On Dec. 16, 2010 I started massaging coconut oil on my legs, feet, etc. because I read body builders and weight lifters use it to take the soreness out of their muscles.  It worked so good I now massage it on twice a day, once after my morning shower and just before bed.  It does stain the sheets, but the wash. 

Symptoms:  Following is a list of the “Before” and “Current” symptoms recorded on my journal and monthly status reports.  Not listed are the results of my March 2012 EMG which the doctors say shows no change from last year’s EMG.  Thus the doctors say there has not been any noticeable progression in the disease.  This is another reason why I think they say I have Benign Monomelic Amyotrophy, but they still can’t explain the muscle improvements, and all the other criteria I don’t fit.  The good thing is they now say I can live another 5, 10 or more years!

Before:  As of Sept. 15, 2009	Current:  As of April 3, 2012
1. Difficulty walking due to weakness in right leg; had to use canes to walk.	1. Still have difficulty walking due to weakness in right leg, and use canes or crutches to walk.
2. Right leg felt asleep and non-responsive when walking or trying to move it.	2. Normal feelings in right leg, and somewhat more responsive when walking, etc.
3. Right thigh muscles shrunken so bones could be easily felt through muscles on underside.	3. Increased strength and size in both legs, and can no longer feel bones through muscles.
4. RH thigh @ 14 1/4” & LH @ 15 3/8”	4. RH thigh @15 5/8” & LH @ 16 7/8”
5. Weight @ 148 lbs	5. Weight @ 152.9 lbs
6. ALS Functional Measurements @ 18%	6. ALS Functional Measurements @ 13%
7. Drop-foot	7. Slight drop-foot due to weak ankle muscles.
8. Can not tip right foot up or down, nor pivot it side to side as much as left.	8. Can tip right foot up and down, and side to side, but not as much as left.
9. Cannot move toes much at all.	9. Can move toes up and down
10. When sitting cannot raise right thigh upward to put on pants.	10. When sitting am able to raise right thigh upward to put on pants.
11. Extreme difficulty putting on right shoe.	11. Less difficulty putting on right shoe.
12. Right ankle very purple and bruised almost all the way around it.	12. Right ankle no longer has bruised appearance anywhere on it.
13. Unable to raise right foot when laying face down on stomach with legs outstretched.	13. Can slightly raise right foot when laying face down with legs outstretched.
14. Extreme difficulty rolling over in bed because right leg cannot move on its own.	14. Can roll over in bed with a minimum of difficulty.
15. Right leg cannot push downward at all.	15. Right leg can push down with some force.
16. Excess and thick saliva primarily at night.	16. No problems anytime with saliva.
17. Excessive yawning.	17. Normal yawning.
18. Cannot walk on toes of right foot.	18. Still cannot walk on toes on right foot.
19. Cannot stand on right leg at all because the knee will give way.	19. Can stand on right leg a while because it has gained some strength.
20. When sitting cannot pull right foot backwards at all.	20. When sitting can pull right foot backwards, although not yet as far as the left.
21. Mild insomnia	21. No insomnia
22. Moderate stiffness in right leg and foot.	22. Mild stiffness in right leg and foot.
23. Cramps in different areas of both legs	23. No cramps in either leg
24. Spasms in different areas of both legs	24. No spasms in either leg
25. Weakness in right buttocks, thigh, calf, ankle, foot, and toes	25. Still have slight weakness in right buttocks, thigh, calf, ankle, foot, and toes.
26. Weakness starting in both hands.	26. No more weakness in either hand.

Medications and Alzheimer's: Akathisia and neuroleptic malignant syndromes

When our loved ones with Alzheimer's have a sudden setback, we have to step back and ask, is this a result of the disease process or is something else going on? It is well known that setbacks often to coincide with urinary tract or other infections and, once treated, we may see improvement again.
It may not always be obvious, however, that our loved one is experiencing a setback as the result of an adverse effect from medication. It may take days, weeks or months for the side effects to appear and we might not make the connection. In this case we may assume that the symptoms we are seeing represent worsening of the disease.  The person’s doctor might not even make the connection.  I know this because we had such an experience with Steve and neither I, his doctor/wife/caregiver, nor his physicians made the connection.  As embarrassing as this is for me, I feel it is important to tell this story to prevent others from going through this same nightmare.

I will begin by saying that Steve has almost fully recovered from what happened, but it has taken several months to get to this point.

Steve was doing quite well throughout December 2011 and into the new year.  Overall he seemed quite stable for the remainder of 2011 after he recovered from the previous medication related fiasco, a reaction to prednisone of more than a year ago.  Our story was taped in mid-December for “The 700 Club” (www.cbn.com), which can be viewed on my website at www.coconutketones.com.  The story aired in January but shortly after we saw the first signs of trouble when he broke out in a dripping sweat for no apparent reason and then he began to spend more and more time each day in constant agitated pacing, anxiety, constant talking, and confusion.  He had a runny nose and broke out with a fever blister, which had not occurred for more than a year, so I initially attributed these changes to infection.

He developed problems sleeping (constant chatter and getting up). One night he woke up in a night terror and was so confused that he ended up in the hospital where he was treated by his primary geriatrics doctor and a psychiatrist with Ativan, Haldol, and Zyprexa, and eventually Abilify. In the hospital he gradually developed extreme symptoms with episodes of massive sweating, severe tremor, anxiety, low grade fever and diarrhea. Upon reviewing his medical records, I learned that he did not receive his Alzheimer's medication Exelon on many occasions.  As I became suspicious that he was experiencing some type of toxic reaction rather than infection, and researched the medications he was receiving, I learned that all of these drugs carry warnings against use in people who are elderly, and also those who have dementia or Parkinson’s.    

But what started all of this?  In mid-December, he began to see a new doctor who specializes in geriatrics and has many Alzheimer’s patients.  I mentioned that Steve would occasionally have a problem getting in bed and going to sleep and he prescribed a very small dose of valium for the evening to help him relax. I should know better by now to research any new medication that is prescribed (or even available over the counter) for Steve, but I am guilty of going along with this.  I now know that valium is also on the list of drugs that are not recommended for people who are elderly, because it has a longer half-life as we get older, and it is also not recommended for people with dementia or Parkinson’s disease. It was nearly four weeks before he began to have the first sign of excessive sweating. I have read that it can take as long as three months for side effects to occur.

There is a name for the problem that we were seeing at home – akathisia, or the inability to sit still.  People with this condition have trouble remaining seated even when exhausted and often experience anxiety and confusion as well. While in the hospital, Steve grew worse every day and the man who was spending most of his time up and walking around the house before he entered the hospital, could barely stand now, was stiff and stooped over from weakness, and had a severe tremor.  Several times a day he would become drenched with sweat.  I believe he was developing an even more serious reaction called neuroleptic malignant syndrome that is most commonly caused by Haldol. This syndrome carries a 10-20% mortality. All of the above drugs mentioned (except Exelon) are on the list of drugs that can cause this syndrome.  The Haldol was ordered to be given PRN, or “as needed”.  I discussed my belief with the nursing and physician staff that the new symptoms we were seeing were related to Haldol, but they gave it to him anyway at night when I was not there to prevent it.  In other words, Steve was being treated for side effects of Haldol with more Haldol. 

 decided to ask for his discharge since he was getting worse, not better in the hospital.  The staff discouraged me from taking him home, because they did not believe I could care for him there, but we did anyway.  I felt that if he could become so ill while admitted to the relatively high level of care that a hospital provides, it was very likely he would continue to get worse in a rehabilitation facility. With the help of my daughter Joanna, her fiancé, our helper/friends Sybil, Nemuel and Joe, and after several very difficult weeks with little sleep, we saw steady improvement as the drugs left his system.  He is now sleeping very well, no longer pacing or sweating, back to walking much of the day, as is his custom, back to joking with us; the severe tremor is gone and his anxiety is substantially gone.

I have read that the levels of Haldol in the brain can be twenty times greater than the level in the bloodstream.  It can take forty days or longer for the Haldol to exit the brain completely.  Valium also has a long half-life and can accumulate in the body and brain.  Some people will then experience a paradoxical reaction, the opposite of the intended effect.  Risperidone, and other anti-psychotic drugs, SSRI type anti-depressants, anti-emetics such as Compazine and Reglan, and amphetamines and other stimulants, can cause the syndrome of akathisia.  They can also worsen symptoms of Parkinson’s disease.

It is common when people with Alzheimer’s enter assisted living facilities for them to deteriorate rather quickly thereafter. I wonder how often this deterioration is a direct result of drugs they are given to control their behavior, such as Haldol and risperidone, and not due to the disease itself?