Update(1)

Iris L.

I just returned from a four day bus tour to Death Valley and Las Vegas, about 260 miles from my home.  I had absolutely no problems on the trip--I slept well and had enough energy and was engaged.  Now, back home, I don't feel well at all.  I sleep poorly, I am very fatigued and don't even get dressed some days, and I can't seem to get motivated to do much, although I did go out for one evening to play a game with new people.  

Did I overextended myself?  I'm going to take this week until Thanksgiving to rest up.  

My cardiologist is examining me for cardiac amyloidosis, something I never heard of before.  I told him my Amyvid PET scan showed no amyloid in my brain, but he said brain amyloid does not correlate to cardiac amyloid.  Cardiac amyloidosis is a rapidly progressive terminal illness, in most cases hereditary.  I'm pretty sure I don't have this.  But I do have something that seems to be causing some degree of heart failure.  The next step is a cardiac MRI.  

One of the treatments for cardiac amyloidosis is a heart transplant.  If, by some chance this is what I have, I won't be signing up for a heart transplant.  That is just too much for me to deal with!  I can barely take care of myself and my cats now.  

Last night I reviewed my 3 nots and a will.  I'm aiming to keep myself and my cats comfortable.  That's all.  I'm not expecting or planning anything more at this time.  My travel club has upcoming out-of-town tours, but I will only go on day tours for the time being.  But nothing before January.

I tried to schedule an appointment with my neurologist before the end of the year, but he was booked up.  The books won't even open up until mid-January.  I am interested in his opinion of my neurologic status.  As long as I have nothing to do and no responsibilities I seem to be okay.  But I cannot take care of myself or my cats in this low state.  I have to figure something out for this midstage.

Addendum: I forgot to mention, I had a hard time with the trip preparation.  It was hard to choose and gather what I wanted to take with me.  But once I got on the bus everything was handled for me, so I was able to handle myself okay.

Iris

Joydean

Iris, so glad you enjoyed your trip. 

I have read a lot of your post, and I don’t have the words to say how much I admire you. I have learned a great deal from the advice you post, your wisdom, you are in my opinion a very special lady! I pray for God to just bless and protect you! I hope this does not embarrass you! 

Iris L.

Hello Joydean, no, I am not at all embarrassed.  I post to let people who might be dealing with the same challenges that I'm dealing with, know that they are not alone.  

Posting also helps me figure out things in my own mind.

Isolation and feeling disconnected from life around oneself are very real.  

Best wishes to you too, on your journey.

Iris

Michael Ellenbogen

II wonder if a lot of this  has to do with the time of the year and getting  darker  sooner.  I have really  been struggling for about 5 weeks now and in need by 7.30. Even worse since the time change. In bed by 6 pm yesterday. I have never had so many issues related to this in the past.

eaglemom

Iris I'm glad you were able to take your trip. Planning what to take is difficult - short sleeved shirts or long sleeves? These pants or those? If I take X then I need to make certain I have shoes that match. On and on. It can be and is difficult to think it through.

I'm thinking your exhausted from the planning and the trip itself. That was out of your 'normal' routine, therefor different and you certainly were more engaged with people than when your home. I think its good your looking into it, but don't focus on that. As Michael said the time change messes with many of us.

Do you have a patio? Some place where you can sit outdoors. I am such a great believer in the power of fresh air and sunshine. If you end up taking a nap outside, even better. See if going outside for at least 15 minutes a day doesn't help you some. Of course you can be out however long your comfortable with. Its just a thought.

Feel better and let us know how you are doing.

eagle

Iris L.

Michael, I'm glad you mentioned that.  A couple of years ago, I realized that I am affected by Seasonal Affective Disorder, due to not getting enough sunlight.   I did purchase a light box to use.  I have to look for it.  Like everything else, I misplace things and I can't find them.

I can't seem to get to bed earlier because my mind gets stimulated in the evening.  I am wide awake between 6 pm and midnight.  Today I slept for twelve hours, from 1:30 am until 1:30 pm.  Not straight through however, I got up several times but never felt rested enough to get out of bed until 1:30 pm.  Of course, by then, there are only a couple of hours until the sun starts to set.  It seems that my days and nights are reversed.  I sleep in the day and I am awake at night.  Not good!

Eagle, I do have a balcony, and when the weather is warm enough, I do sit out there to read the newspaper.  I try to sit on the balcony in between feeding myself and feeding my cats and cleaning up a bit.  Nevertheless, as I mentioned, after a couple of hours,  the sun begins to set.  

My issue with trip planning is not so much in making a packing list, but in making a decision on each item.  My mind goes back and forth.  This is a function of my particular form of cognitive impairment.  I have been dealing with this type of indecision for years.  It is exhausting!  I wind up not making a decision and thus bring too much, bringing items that I don't even wear.  I have more trips that I could be interested in, but I cannot deal with the indecision.  Nor the subsequent fatigue.   Anyway, I have to see what the cardiologist has to tell me about my heart and this shortness of breath.  I can't go out-of-town too far with an unknown heart problem. 

In our American culture, we like to be constantly on the go.  It has to be OKAY to live a life that is not constantly on the go.  Okay for people like me.

Iris

 

Michael Ellenbogen

I cant believe it but I was in bed by 6 PM yesterday. I just feel so tired these day and keep in mind I have not traveled or had to unpack any more for a long while. I also spend a lot of time outside these day and I am seeing the sun almost all day because I now spend my day in my sunroom. Does not seem to help me.

My2moms

Hi. I would like to add that I to have a northern light that gives you a full day of sunshine to your brain in 20-30 minutes. U just let it sit beside u while eating breakfast works best for me.  Must b at least 10,000.00 lumens.  

May I also ask if you had vaccine? I know that's a personal question so you don't have to say, but if so. That may be a big part of it. Do research, it's finally coming out in the news now for which has been hidden from the public. I hope I'm allowed to tell the truth on this site. It needs to be known to EVERYONE. 

best of luck,  I pray for everyone everyday for my mom also I believe is lewy body dementia. I've been her caregiver for 4 yrs, now it's to the point of placement.  I've kept her healthy through out this whole so called pandemic. I've not been sick either..good home remedies are the key.  God gave us tremendous immune systems. We shouldn't mess with them.

My opinion, best of luck,  get chked regardless asap. There's help with the hospitals if you ask them. They have money set back to help, but you have to ask. They won't volunteer that info.

Hope that helps

My2moms

MMichael,  please read my post to iris. You could have an iron deficiency or more serious.  Esp if you got a jab. Please research this asap.. 

Prayers for all, as Om needing them too. Giing through a lot w my mom and it's so sad and heartbreaking.  She doesn't deserve this but God is in charge and can't question him. 

Pray and get that faith inside of you, he will take care of all his children. 

Hope you get better  

Michael Ellenbogen

I have had both COVID vaccines and the flu shot. Were is the other thread to look at. Thanks

Iris L.

Hospitals and doctors can help only so much.  I have SEID, formerly known as chronic fatigue syndrome.  I like the new name, systemic exertion intolerance disease.  I get wiped out when I exert myself.  I like the new name, not the disease.  Most doctors deny that this is a real disease.  But it is real!

Last night I went to bed at 1 am, got up six times, and was awake all night until 7:15 am when I got out of bed.  It is now 10:40 am, I am still awake and alert.  It's very odd, how I can oversleep on some nights, but not sleep at all on other nights.  

This is not new for me, this has been happening for a long time.  For many years I used prescription sleeping pills to help regulate my sleep, but with my cognitive disorder, I wanted to get away from the pills.

I'm going to try to stay awake all day and go to bed early-ish.

Michael, I had times in the past when I had to stay in bed all day until I built up on my rest.  Perhaps you need to build up on your rest.  People tend to overextend, leading up to a holiday.  Then when the holiday comes, they are too wiped out to enjoy it.  Don't let this happen to you,  Michael!

2moms, Xanax can overstimulate PWDs.  If she is very out of control, she may need an ER visit.  A sudden change can be a sign of a silent urinary tract infection.  Specific antibiotics are needed.  If you post on the Caregiver boards you will get more responses.

Iris

Iris L.

Success!  Last night I slept ALL night and awoke feeling refreshed!  What a great feeling!  

I kept myself awake all day yesterday despite being drowsy in the early evening.  I was ready to go to bed at 9:30 pm but my brother telephoned, so we talked for a bit.  I got to sleep at 11 pm and slept until 6:15 am.  That was over seven hours without interruption.  That included DEEP SLEEP.

Deep sleep is very necessary for normal brain functioning.  But no one understands this.  Only one of numerous doctors I have consulted over the years has ever talked to me about the quality of my sleep.  

It has long been my hypothesis that some of the behaviors exhibited by PWDs is related to lack of deep sleep.  It is well known that PWDs sleep poorly.  This should be an area for clinical trial.  

I know that I function poorly when my sleep is fragmented, which is usually every night.  I am very excited now.  I wonder how my day will go today with a rested brain?

Iris

jfkoc

2 moms.....what is the truth about the vaccines you are referring to? I am unable to find anything online

Joydean

Iris so wonderful you got a good nights sleep and are rested! God bless you!

Iris L.

Thank you, Joydean.

Iris

aannaa

So glad you enjoyed your trip!!!

Tfreedz

I’m relatively new to this forum so just saw this older post of yours Iris. Wondering how your sleep has been now?

I too believe lack of sleep can contribute, cause cognitive disfunction. My mom, who was diagnosed with FTD 5 months ago at 70 yrs old, was known for not sleeping. She was a single mother working night shifts my whole life, she would spend the days awake taking care of us. I remember her often saying she had no sleep for 72 hrs. Also remember her being somewhat delirious at times due to lack of sleep. Now I wonder if that was what caused her dementia. I’ve read that your brain needs to refresh or renew during certain sleep cycles so preventing that from happening must do something negative. I wish there were more studies on this, or maybe I just don’t know about them.

Either way, hope your sleeping and energy has improved!

Larrytherunner

Iris, I have a suggestion about getting better sleep. I started taking the anti-inflammatory drug montelukast in February 2016. After starting 10 mg twice a day, within a week, not only did my extreme mental fatigue go away but I started having dreams again like in my younger days. The drug doesn't make me sleepy but once I sleep, I go into a deeper REM sleep. One 10 mg per day doesn't seem to work, I believe because of its short half life. Twice a day is effective for me. A year later after starting, I started taking 10 mg three a day after I was able to get the generic in Ghana. One reported side effect of montelukast is having bad dreams, but the vast majority of my dreams have been good.

I would never suggest that children should take this drug because of possible side effects due to its possible interference with childhood synaptic pruning, but for older people having increased neuro-inflammation due to aging, it could have a benefit of better sleep. The completion of the Emory University FDA trial using montelukast for early stage Alzheimers should answer a lot of questions, but unfortunately its completion will be delayed until at least 2024 because of Coved.  

Taking it for a week to ten days could determine if it can help you get better sleep. I know you are a physician so you are aware of the possible risks and benefits of taking it off label.

Iris L.

I went to bed at midnight, stayed awake, finally got out of bed at 4 am, ate breakfast, read the newspaper, fed the cats and looked at my emails.  Now it's 7:25 am and I'm here.  I would like to try montelukast but it is not available otc here.  I know my poor sleep is the cause of my poor functioning.  I'm going to try to stay up all day today and try to get some chores and errands done.

 

Iris