INSOMNIACS place to talk in the wee hours
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HI Beatmom, Love when you pop in
THanks for the invite. We would laugh so much. I owe Philly a call from last night. Sandy just went back to Houston. I'm sure they had a great time. They have been friends since high school. Neat. You know the invitations there in return. I have solar heat for the pool now. 0 -
Did any of you watch that special on CNN about Glenn Campbell? I've known about his Dementia, or some call it Alzheimer's... But looking up more, I find it could also be mis-diagnosed as Alcohol Dementia... Didn't even know about that one... I KNEW there are many types of Dementia, but at least they are bringing more awareness to Alzheimer's.....
But changes my perspective on the whole thing... I felt so bad that they were broadcasting his decline! And most of us have been around our loved ones who have suffered from this... but thinking that this could have been prevented, puts a different spin on it.
I remember reading about him and Tanya Tucker years ago, and how he used to beat her silly after drinking.... so things aren't always what they seem.
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OH Chevy what an uplifting this too say. HUGS. Glad it went well with Theresa. Would it be to much to ask for you to tell the full story about Theresa and you all the way back from the beginning in the 1940's. I loved the story when you told me. Please, please. All the details. It's such a good story. Good stories need tellin
they do our hearts good Mema the eyes doing good? How many weeks post op?
LOverly, you are going to laugh at me. All my sources on Baclofen said different initial does than my PCP's drug source. According to her palm pilot drug source, I should have started at 5 mg. and work up.
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Chevy- I did not see the special, but knew he had Alsheimers. Wow, who knew that there was an alcohol related dementia? We have tons of dementia in the family, including early onset (father) so I follow everything on this disease closely. After reading up on it this morning, it makes complete sense that alchohol would damage the neurons. Glad I don't drink much anymore, I already have some genetics working against me on this one.
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wow this is interesting. My relative in france has alz and he drinks red wine with every meal 2 bottles a week hummmm
Jazz funny you mentioned but I stopped dreaming during treatment it was so wierd completely blanc brain. And now after 2 1/2 years out of chemo it's all coming back I started to dream again .
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There are lots of forms of dementia. I had clients with alcoholic dementia and my brother in law had hepatic dementia as he became more and more ill with Hepatitis C. I think they're finding dementia in football players and boxers who had a lot of hits to the head.
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I went to a poetry reading the museum today with a friend and heard the ABQ Poet Laureate Jessica Helen Lopez recite some amazing poems. I first of all a) did not reallize my city had a poet laureate in residence and b) her readings were JUST amazing. I have not been to a poetry reading in a long time, and this one was so worth it.
Here is something from that I can share with you from a TedEX talk she did here called Love Letter to ABQ. Enjoy.
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Oh my Dear Ms. Sas!!! How do you function with that kind of head pain? Yikes! My head hurts too reading your description. So sorry.
You did't go straight to 20 mg, did you?? Ay ya. Ok, there is still hope that the med will do what it's supposed to do in the general population. I think healthcare workers are the worst patients. Hahahahaha
We have rain again,Ms. Smaarty!! Are you back in town?
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Feel lazy with this weather...and so is Mitzy.
Thanks, Jazzy for sharing the poem
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Yes.... I also heard that the only way to tell if it is Alzheimer's, is AFTER they pass away.... I was told that by my Grandma's Doctors.
I was also told there are about 5 different types of "Dementia".... When Grandma started getting so forgetful, I didn't know what to do! I called a Senior resource center to talk to someone, because I was really afraid.... Sometimes Dementia starts from a "life change".... Like a "Fall, or a heart attack"...... which was what Grandma had..... But it hit her really fast!
Alcohol related Dementia makes so much sense.... Guess Glenn Campbell was also into Coke.... not only an Alcoholic... at least that's what I read. Heavy drinkers just don't make any sense anyway.... And it figures that it pickles your brain, just like it does when they get drunk.
But if it helps bring awareness to the Alzheimer's Foundation, then that is good.....
And Theresa....! Theresa would remind you of the Golden Girls.... "Ma'! That feisty little Italian Mother of Dorothy! She is soooooo sharp, and just cracks me up.... I've known her since I was 10... We moved in a block away from where we are now, and I used to play with their next-door neighbors! Theresa & Eddie then had 2 little boys... Danny & Steve....
I used to do her hair in the 70's! I charged my cousins and neighbors a dollar! And everybody got the same hair style! Like mine! We moved here in 1964....DH used to go fishing with Eddie, and the 2 boys!
But we really got close... Danny had a hear-attack when he was 50! Had to have a heart transplant... Finally a few years later, he got Lymphoma, and the chemo from that was just too much for his heart.... He passed away .... It was so hard on his folks....
Then we were going up every morning, when we would walk Lacee... She LOVED our dog.... And Lacee would go sit on her feet.... But Eddie who was a couple years older just became too much to take care of.... Steve and Judy finally moved him into Assisted Living.... And Theresa's nerves and stress caused her so many problems... High blood pressure.... passing out spells...
So then they moved her over to Assisted Living, in a different room from Eddie... which was GREAT for both of them.... SHE got better! Could see Eddie whenever, but didn't have to take care of him! But he got worse.... passed away....
But we always cared for Theresa... Then SHE got problems... a little at a time.... Just too old to get over anything! Now she is in this dinky little rehab place. But she seems to "like it!" And that's all that matters.... I honestly don't think she will ever be able to go back to Assisted Living.... Her "mind" is getting better, but not her body... very weak... but they are working with her....
So I love her... she is like my Mom.... closer to me than my Mother was... or like my Sister that I never had... We just enjoy being around each other, and making each other laugh... I know someday this will all change, but right now, things are good.... That's all I want.....
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lover, not home yet, still in Fresno. Didn't know it rained at home. We might catch some of it in Fresno and on the way to walnut creek tomorrow. Don't know which day I'm going home yet. Need to see DS before he's off to Oz again.
Cubbie, I still sleep with a pillow held to my chest. Not big, about 10 x 16 or so. For whatever reason, it hurts if I don't cuddle and its almost been a year since the last sx.
Sassy, sorry about your head, ouch. Hope it still keeps getting better.
Patty, where are youuuuuuu.??
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Beatmon, so glad your David liked his fajitas! We should all meet there sometime, hubbies, cousin, and us. Maria would be in her element.
I finally got my other digital painting posted in Artists thread if anyone is interested. A little fuzzy. I've looked everywhere for that doggone file, can't find it, so I had to take a picture of the framed piece.
Sassy, what do you know about Post Exertion Malaise? I've been researching but my brain is so fried I have no idea what to look for.
Rose wants out, later Owlettes.
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Thanks for all the sleep position tips everybody. I'm normally I side sleeper, and I'm just getting to the point where I can lay comfortably on my right side for short periods of time.
Chevy, I'm glad that Theresa is back to being "Ma" of the Golden Girls (can totally picture that). Glad she likes her rehab place, it's amazing what rehab can do sometimes. I've seen people come back from being very weak physically. Even if she can't go back to Assisted Living, they should be able to do a lot for her.
Sas, I hope your head feels better.
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Chevy- both my parents had dementia at the end of their lives. My father had early onset dementia and went down the path that many people are familiar with around the disease from repeating himself to the point where he could not talk or even focus his eyes to look at us. He was very much in there though, and every once and awhile would say something as clear as a bell.
My fathers sister got it later in life too, although I never saw her during the worst of it. Their mother had it too, but it was thought to be related to small strokes. I saw her towards the end and she was pretty high functioning but did not know who I was. The last time I saw her we had the most wonderful lunch together at a Perkins Pancake House in PA and when I asked her if she she knew who I was, she said "no, but I know you are important to me." Good enough for me. Needless to say, the family history on that side is not encouraging.
My mother had a stroke in the front of her brain so she lost her short term memory/executive functions but always knew who we were and was pretty high functioning until later on. Then she started really living in the past. But she always knew her children. Her dementia was much less cruel than what my father went through, and for not as long either.
So unfortunately, I know a lot about it, but clearly they are finding out more all the time about what contributes to it.
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Champagne: Study Finds Drinking Alcoholic Beverage Could Prevent Dementia and Alzheimer's Disease
A study published by University of Reading found that drinking three glasses of champagne per day could help prevent dementia and Alzheimer's disease and can improve spatial memory. My mom died with dementia at 87. She loved to drink!
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Jazzy, that's sad your parents both developed dementia. One of my aunts had it, although she seemed to enjoy telling us about the stuff she could remember. I learned stuff about her childhood and growing up before electricity that I never knew before, and I doubt we would have talked about otherwise. I hope they come up with better treatments soon.
Mema, you ever notice that all the alcoholic beverages that have health benefits are wine-based? Has anyone ever said that beer has health benefits? Not that I drink either one, I just find it interesting that grapes seem to be the key. Wonder if grape juice has any benefits!
Think I'm going to be up a while tonight. I've been having a really rough weekend. Lots of tears and worrying. I'm not sure why its worse now, of all times.
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Cubbie- ((((Hugs)))) You just had your surgery pretty recently and all surgeries take a while to recover from. It took a long time to sleep well after my mastectomy. Are you taking chemo or any estrogen blockers? That might affect your sleep. Ask your doctor to give you something for sleep. Lots of the pillow sugestions above sounded like good advice. Be gentle on yourself, allow your body to heal and don't expect an instant return to normal.
Jazzy the poem and visual tribute was gorgeous! What lovely skies you have. Thanks for sharing that. I enjoy all the posts. Mags- I love the stubborn sign.. pretty funny! I will never ask for directions - not ever!
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I suspected that about you Rose....stubborn.
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Oh Cubbie. First,
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Cubbie, what treatment plan do they have for you? Tears came out of the blue for me about 4 weeks after MX.
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Thank you, Rose. I'm not currently taking anything - chemo is not in the plan due to low range Oncotype, and I don't start estrogen blockers until after the first of the year. I have to have either more surgery or radiation first, don't know which yet. You'd think I'd be a bit more relaxed with the Oncotype news, but I'm just as tense as ever. Another woman I know is getting test results tomorrow, and I think that is part of the problem. I'm scared for her, I'm scared for me, and I'm sad this happened to all of us.
My family doc did prescribe lorazepam for sleep, but I've never even opened it. I'd rather be tired.
Thanks for the sheep, Loverly. Maybe this is all to be expected at this point in healing.
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Try to get some rest. It's ok to take the lorazepam. It will help with the racing thoughts and relaxes you. Sleep is important for healing. Maybe try half of a tablet first. Hang in there Good night and hopefully, no cancer dreams and only sweet dreams.
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I also read where wine is considered okay! Maybe not as much as my UNCLE drank in the old days, or maybe not that home-made wine DH's Grandpa made..... He squashed up his Concord Grapes, and then added sugar, and maybe yeast, (but grapes do have their own natural yeast on them) and then he set that crock by the wood stove, to let it ferment, until it was "ready"...
"Ready" meant if you drink this it would blow your socks off, and send you out in the streets willing to beat the chit out of anyone that walked by. Of course the younger folk would pay nary a mind to this, and found it "fun" to drink with Grandpa.... Usually winding up with staying there all night.... on the floor.... and no-one cared.
I made my own wine a few times! Just because there were all these GRAPES growing out back! So the FIRST time I made it, I followed directions. And it was GOOD! Siphoning the wine from one jar into the bottles was the best fun! But we finally gave it away... Way too STRONG! Grandpa loved it.
Hope you guys get some sleep!
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Upon doing research, trying to find a crock of fermenting wine by a wood stove, I found this........ It's long, but really funny... I thought.
http://musingsfromaworkaholic.com/2014/10/14/wine-...
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Oh never mind... I've been surfing silly stuff, and you would be AMAZED at what you can find... most of it isn't worth passing on.... Ha!
And Rhubarb! You can make wine out of Rhubarb, or even Dandelions!
So when you gals get up this morning, go out and pick you a bunch of Dandelions, and make some wine!
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Cubbie, I never took pills before this either, but I do take a lorazepam at night to help sleep. And sometimes during the days when I just need to relax. I am just a month ahead of you on the surgery. Tears at random here too. I think the randomness will be around for a while. This chit changes you.
Wow Chevy, that is so cool that you two have known each other so long!! So many memories! I am glad she is feeling better and hope her body follows suit.
Lol-Beautiful dog. I have a daschund mix named Mitzi, but she is a lot smaller than your Mitzi.
I have some dandelion home made jelly in my fridge a friend gave me. Delicious!
Great sign Mags!
Hope all have a great day!
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Cubbie- it sounds like a lot is hitting you now. So much happens so fast after dx, you get dragged through the tests and into surgery pretty quickly. There is no time to process anything. Honestly sister, it may all be setting in now. I am sorry you are hurting, we understand your tears.
My BS gave me some meds to sleep too. Take them as you need to. It is okay to get some help around this. Like other sisters here, you are still in treatment and the whole thing is totally scary. I am glad to hear your oncotype was low and no chemo (same here), but it sounds like you might need some more treatment.
Hugs sister, we are here for you.
I am very grateful there is more open conversation about dementia than when my father got diagnosed back in 1983. He was in his early 60s and I was in grad school. Trust me, no one in my peer group really even knew what that was, nor did they have any parents with it. It was a very socially isolating time for our family, but after I moved back near my parents, I went to an Alsheimers support group which REALLY helped me to know how to help my dad.
Rose- glad you enjoyed the poetry! The poet laureate does such a wonderful job articulating things. She read some other poems to that were so good. Lots more on her on YouTube if you are interested. Jessica Helen Lopez in New Mexico. And we have the most incredible skies here.
Mema- I love wine and I won't give up drinking, I just limit it per my MO. Couple glasses a week max. I know there are benefits to wine. Everything in moderation or even more moderation these days, right?
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OWLIES, morning, you've been busy. LOL. I have to do split screen to keep it straight.
Spookie, I avoid the worry on weather by not listening. Schatzi tells me about bad weather by her behavior. When she tries to lead me to the closet or under the table, I turn the news on and check the sky. Schatzi can be as much as an hour ahead of a storm. Then you are my alerting system for faraway storms. Works perfectly girlfriend
Jwooooo guess we missed you, Bummed. If you do another quick flyin think of Spookie and I. Were fine with short couple hour visits.
Loverly, head is improving, but not healed/fixed yet. PCP thinks it's my neck(very bad neck for decades). She wanted me to try the Baclofen again at much lower dose. I took 5 mg last night and 5 mg this morning when I noticed the spasms getting worse and the head hurting more. I posted before her palm pilot source said 5mg starting dose, but the original script was written for 10mg one to two every 4-6 hours. Standard daily dosing for normal folks is 60-80 mg, way higher than my 20 mg once a day. We will see what happens...........Is that your backyard? How is Mitsy doing?
Jazzy, her reading is wonderful. So, soothing. Hope you post on the jazz & poetry thread too
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Chevy, thanks for sharing your life story with Theresa. She is so like family to you. Hugs.
Mags. on the post exertion malaise. Never heard that phrase before, but it's a good descriptive phrase. It may have been coined recently and hasn't reached general usage yet. This link is to Medline Plus. It covers everything A_Z about malaise. Fatigue and malaise often accompany one another. Post exertion fatigue has been identified with post polios for several decades.
https://www.nlm.nih.gov/medlineplus/ency/article/003089.htm
For you and me, MS(you) and post polio(me), we are classic for malaise/fatigue after activity. We just get tuckered out if we do to much. With normal folks they recover with rest. We recover much more slowly. AND if we stress it too much, we may not get back to the level we were at before. Pacing ourselves is very important to maintain what we have.
As we age are musculoskeletal systems are not aging like normal folks. Bummer, but true. Trying to maintain an exersize and work schedules that helps us maintain our highest level of function is what we should strive for. I've studied post polio(PP), superficial standard knowledge re MS.
When PP was formally recognized in 1980 by Dr. Halstead. At the National Rehabilitation Hospital in Wash, D.C., he and his colleagues identified the differences between how PP's may deteriorate if the do too much. Prior to that the thought was "just do more and you will get better". Even today physicians/nurses/physical therapists have that attitude, unless they have taken time to learn about PP and other neuromuscular disorders in more depth than basic school.
With PP's the most has been written about post exertion fatigue. The little research that has been done points towards using modified cardio training. Modified to not stress us too much, yet give us the benefits of some cardiovascular strengthening. Modified strength training with light weights can be guided by a physical therapist if you can find one schooled in understanding your needs. This being 2015, things may have improved. My last experience with a physical therapist in 2011 was good, but I had worked with him on the nursing floor in years past, and thought him head and shoulders above the other therapists.
I have found swimming is my go to exercise, and walking. I'm retired so work is no longer an issue. 12 hour shifts were my nemesis. My legs would give out. The extreme was when I would need to be taken to my car in a wheelchair. A joke among the staff was, it was a bad day for them when they started walking like me by the end of their shift.
So, even if you can't find anything directly about post exertion fatigue as in studies, breaking apart the words is easy enough. Suggest you look at post polio fatigue. All the concepts would apply to MS.
That's why I get a work up every decade or so. Other neurodegenerative diseases have so much in common with PP. If you put PP, MS and Stiff Person Syndrome(SPS) side by side the s/s's are very similar. MS and SPS have drugs that help. PP doesn't. By getting a work up, I'm not missing something treatable by assuming it's PP.
For you the Arimedex adds a whole layer of problems. The AI's are such poison. Having a neurodegenerative problem then add an AI on top of it. Sheesh. Not suggesting at all that you quit the AI, but I did. I've experienced my whole life protecting myself from PP. I made a quality of Life choice to stop AI's. I was 62-63. 2 1/2 years of the three wreaked havoc with my body. Also, b/c my CYP3A4 is abnormal, I was effectively on twice the recommended dose when I was taking them. My CYP3A4 wasn't tested till 2014. It wasn't identified by science as an abnormal allele until 2011. I could have been tested then, but it slipped by my radar until late 2013.
Did any of this help?
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LOverly, YAY the baclofen is doing wonders for my TMJ. It did last night and the previous doses. Hope I don't get into the insomnia. Amazing what a relaxed jaw feels like.
Mema heard that on the news today. Trying to follow the breadcrumb trail. The study was originally published in 2013. I found the abstract, but not the full study. This is an article about the study written when the study was published. Nicely written
http://www.reading.ac.uk/news-and-events/releases/PR503596.aspx
My first question when I heard it on the news was 1. who funded the study? Now it's 2. why is it being publisized now when the study is 2 years old?. Somethings happened to cause it to get wide press coverage now. Could be that another study has been published duplicating the original results. I'll post if I find anything.
In the short term what I have learned is, it's due to phenolic acid in the champagne. BUT don't react to this research to heavily until I read the whole study, as the bolded portion makes me question if this was a mouse study. Emphasis in bold is mine.
"Dr. David Vauzour, the researcher on the study, added: "in the near future we will be looking to translate these findings into humans. This has been achieved successfully with other polyphenol-rich foods, such as blueberry and cocoa, and we predict similar outcomes for moderate Champagne intake on cognition in humans."
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