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She is 63 yrs old on oxygen and pretty much self sufficient. She has been doing this for years and so far has not seriously hurt herself. Shes on a fentanyl patch which i think has a lot to do with it. When she first puts the patch on she will be up for the next 24-36 hours minimum, then the 2nd night she starts getting up for water or the bathroom or to eat and between getting out of bed and doing whatever she intended she will fall asleep. If I dont hear her get up usually i hear her hitting the floor and shaking the house. Alarms dont work (the kind you attach to nightgown to bed) because she wakes up to do something so she just unplugs them. I cant stay up 24/7 listening for her and she never sleeps on any schedule, never has. I really dont know what to do short of say a posey vest, and im sure she wont let me anyways, not to mention the fire dangers and such. I was wondering if maybe someone has heard of an alarm that either wears like a watch of she holds in her hand that once she gets up it will go off every 30 seconds or something unless she keeps resetting it. That way if she gets up if she falls asleep standing and doesnt reset it, it will go off and wake her? I used to be a CNA yrs ago as well as an EMT and honestly I dont want to have to use the latter skills on her if possible, so i need to figure out something before she does break something.
Thank You all in advance, and I hope you are all having a blessed day!
Craig

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We can all hope that 'no news is good news.'
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Has anyone heard from Meno's daughter???? this is breaking my heart, and Vivian thank you so much for letting me know..... when he sent me a hug , he told me he put me in his circle that he draws every morning.... and said things about angels I've never heard before.... if this is true, and i hope it's not, we are so blessed for him crossing our paths and teaching us so much is a short amount of time..... my heart is hurting.. if ya'll hear anything please let me know......
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Judy...forgive me for calling u Ruth.....once again....typo...
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Ruth....as has been said in previous posts....i am in complete shock to hear about Menos decline. I have, literally, clung tightly to every word, of every posts that he has shared with all of us. He has made me a better caregiver to my father, helped me to see beyond the disease of dementia, n connect with the soul of the man that is my dad. There are not enough words in the english language to say thanku for the blessings we have all received thru ur dads posts. He became our mascot...the voice behind the mind of dementia....he became our family...

U have been such a strong n loving daughter...n i dont know if we ever said "thanku" to u for allowing Meno to post on the thread after all the misunderstanding with typos n all. We were saddened to think of the thread without his insight.....now.....we r feeling devastated at the possibility that he will be silenced...I cannot believe this is happeneing.. Please kno how we are all praying for u, Ruth, n for our beloved Meno. I lay down tonite with a very heavy heart, n pray tomorrow will bring a miracle....God Bless u, Ruth.....Angels surround Meno in a tight circle.....n in the center of that circle ...the word.."Me".....
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He has given us all a glimpse into his world and helped us appreciate what gentleness and kindness mean. I hope he pulls through ok. He has touched so many on this forum in a positive way - I hope he knew this. I hope he took notes of how many of us thanked him. So many here thanked him. I hope they can somehow put his posts into a 'folder' for posterity - all future care givers.
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Ramblingman, My thoughts are exactly the same as yours. I had no idea that he was anywhere near death. They have been on my mind all day. I will continue to pray for a turnaround. I just found him less than a couple of weeks ago, but he shared so much of himself in his posts on another thread I felt like I knew him. He has touched my heart. Judy you are a wonderful daughter, you are so lucky to have such a great spirit in your father. Its my belief the human flesh dies, but the spirit (life force) does not. He will always be with you. I pray he stays longer he still has so much to offer to the world. Thank you for sharing your life with us. Vivian
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Oldcodger and Vivian, sounds to me like for some reason they took him off his pain pump and because of that had to go to the er for the withdrawal, not sure though if they took him off pump because he was passing though , because she said he has to wait 18 hours till the sublingual meds wear off..im kind of confused to about why the pump was stopped, if itwas because he was dying, usually you do whatever possible to keep comfortable, even if its too much meds...I too will be praying that all is ok and they get him on something soon for the pain....
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I've been sitting here stunned. I think I'm shocked. I feel I've got to know Menohardy. I loved listening to what he had to say. Please tell me this is just a horrible mistake and he is going to pull through. Judy my prayers are with you and your father. God bless you.
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Am I understanding this post? Is Menos near death???? Tell me it isn't so!!! Is this his daughter? This is heartbreaking news.............
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It is so disgusting. In Menos last hours they removed his pain pump and gave me 10 sub-somethings to put under his tongue and had to take him to the emergency room where he was admitted for severe opiate withdrawal. His PCP said the amount of new pain meds was so little it was a wonder he didn't die from the shock alone. You'd think they would be humane and waited so he could die in at least a comfortable state. He has to wait 18 more agonizing hours to get the sublingual med out of his system before they can re-start the medicine he's been on for 2 years. PCP said he himself wants to get a piece of the pain management doc who has not returned his calls. I just looked up the doctors record- graduate of Ho Che Minh hospital and fired from 3 hospitals where he was an anesthesiologist for suspicion of using narcotics-dirty urines!
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Yes - I do believe that our 'kids' will be sicker than WE are! If that is possible :0) But I am nearly 64 and am able to 'get by' on supplements instead of prescriptions - so even though I don't feel GREAT like when I was younger - there are many who feel far worse. I have been a 'health food nut' long before it become popular to be 'green.' ha ha. I have to laugh because my 40 year old son now CHOOSES to eat the way I fed him when he was a babe of his own free will. THAT IN ITSELF IS CAUSE FOR LAUGHTER. I was the mean mom who fed her kid yogurt and called it pudding, ha ha
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Oldcodger,
Thanks glad to hear that, usually people dont understand or get my humor, but considering your screen name i guess its no surprise that you get it. lol.. I wish I wanted a tens unit for muscle spasm, I have something more exotic and just now making headway after the CDC devastating and handled wrong conclusion on "morgellons" disease.. ALthough i am not onboard with most the conspiracy people out there, I am on board with science and the fact that the affects of environmental toxins and dental procedure toxins, eating habits of this generation, and overall poor nutrition has developed a new and hard to understand disease. It is real and very hard to find a doctor to treat, although more and more are starting too, disease has a close correlation with Lymes which in itself is still denied by some Docs. lol I guess dealing with this the past 4 years has made me a bit cynical to the medical field and especially pharmaceutical companies or Big-oharma as i guess the charlatons are called now, treating symptoms instead of the causes...lol..sorry..See i did choose a fitting screenname. =) I looked up those supplements you mentioned, some good beneifits listed, Some day hopefully soon the FDA will lift its "ban" on holistic medicines and start making headway into solving more health concerns...somewhere a happy medium exists between traditional and holistic medicine...just wish the day comes soon where healthcare is driven by love instead of greed
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Almost forgot - DON'T TAKE CURCUMIN IF YOU ARE ON BLOOD THINNERS without getting ok from doc!! Also, you MUST take it with oils - I just take it with my Omega 3's. But it can thin the blood - so you must be careful - be sure to ask doc first!
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Just have to tell you ramblingman - I love your sense of HUMOR!! Glad it wasn't a heart attack and yes, the TENS can help muscle spasms, etc. too so you could 'kill two birds' with one machine - ha ha.
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Personally, I have been using Life Extension brand Super Bio-Curcumin for my osteo arthritis and it does help a lot. Almost overnight. My sister is now a believer too :0) Sometimes I take one am/pm and sometimes just once a day. It may be worth a try if much of the pain is caused by inflammation. Trouble with drugs is you take one and then it cause a problem that you need another drug to fix. It would be funny if it weren't so sad.
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Yeah drugs to save us from the drugs that saved us. Thats why personally I avoid even tylenol like the plague. for myself i try to stick to natural or holistic practices first. But I am only 43 I dont hurt that much yet.
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I had 3 tens units and the same pain management doctor who prescribed them for dads back, knee and both shoulders then went to hydro and morphine-doesn't matter now and the spinal injections they gave him brought on terrible spells of depression.
I just read an article where Pain Management doctors are being forced to stop writing pain scripts so now they are burning nerves off the spine and since they are afraid of prescribing opiates they now have come up with a drug to get all the people they addicted off the narcotics they addicted them to in the 1st place but in the next paragraph it reads the new drug is more addictive than the old drugs. It all seems crazy to me.
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OldCodger,
Hey thanks for the suggestion, Yeah in the past she has had a tens unit, and if I remember correctly she really liked it. I will ask her about it and see if she wants to talk to her doc about getting one again. besides I have wanted to get one anyways for awhile now to see if it might not help me with my own health problems that I guess according to the CDC is just "delusional".lol but thats a whole other story. =-)
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I have no experience with those particular patches - but my MIL did use some sort of morphine patch after surgeries and basically slept a LOT.

Last year she was fitted with a portable TENS unit - we call it the 'bug zapper' - but basically it has 4 pads that stick on the skin (he has degenerative disk problems in lower spine) and these pads have wires that go to the small TENS unit and you can choose which 'program' you want your zaps/pulses to be on. It tricks the body and messes with the pain signals and she gets a lot of pain relief with this and it requires NO medication.



She will wear it for a few hours and then may not need it for a day or two - sometimes a week. It was the BEST thing they ever did for her pain. I don't think there is a limit on the amount of time you wear it - you can turn the signals up or down. Medicare paid for hers, but sadly, Medicare no longer covers the cost. But they are not horribly expensive and you can buy replacement pads and wires on Amazon.com fairly cheaply.

Just thought I would mention this device if you have never tried it. Her pain management doctor suggested it. It sure cuts down on spinal injections. It may not eliminate them completely - but she doesn't complain of pain when she wears it. It is about the size of a couple of decks of cards stacked on top of each other. I clips on your clothes and can be concealed if you want to wear it out and about. The website shows the unit she has - but there are a lot of them out there. This one is fairly substantial - not cheaply made and can hold up to a accidental drop :0)
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What I always hated at the bad nursing homes is when I would go in and see these residents that werent mobile on their own sat i in front of a ttelevision in the day room with crap like mtv or something on it that they would never watch. To me that was abuse. As far as my mom, yeah i agree, those patches are wicked, ive heard they are even more addictive than heroin. No wonder she likes them so much. Hoping for eventually to try the ms contin, Funny how growinjg up I was the black sheep of the family, but now when its time to play baseball, im the only one wearing a home jersey...I get no support from the family, and even though shes at home, my sister has not once visited in 4 years, My moms sister lives 3 miles away and has seen her once in the past 4 months...what happened to the world, when did it become so insensitive?
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I sure hope they (her pain doctor) doesn't go too fast causing her to go thru withdrawal
Your mom is certainly fortunate to have you for care and protection. My heart gbreaks when I see our aged people siting at the doors waiting for someone (anyone) to visit them. I asked once if they were made to do that and ws told no-they do it all day every day waiting , waiting,waiting, And the hardest is when someone who can hardly see or is fogged in thinks you are their daughter for a moment and those eyes light up and then when reality hits them they go dim again! God Bless-hope you will stay in touch-menos daughter
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Well she went to the pain specialist today, He seemed like a decent doctor and took the time to talk to her and to me as well. He is going to cut her patches down from 15 a month to 10 a month and see how it goes. He said that working towards getting off the patches and onto a different pain med would be the best as like you said the patches are getting harder and harder to get and no doctors want to prescribe them anymore (thank God).
there are good nursing homes out there, I have worked in a couple of them, but our of the four I have ever worked at only one of them is somewhere i would be willing to let my mom live in. it was a private facility with only appx 50 beds, and each CNA would only have 5 sometimes 6 residents each to care for. which was nice because we were able to do the things these people deserve, basic things like make up, nice hair styles, and the best of all no Sweat clothes all the time...ugh The owner was blind and always there and he cared about the folks living there, it was nice, he also took care of us CNA's and the crew was all top of the line AIds. it was an gero/psyche facility and probably one of the more rewarding places ive ever worked. Ive also seen some real dumps, trained in one actually, sad sad sad is all i can say. unfortunately most of these places are only as good as the worst aid and used to be almost anyone could be one, now adays its a little stricter and slowly the help is getting better. Ive seen aids abuse residence and yeah i reported them, was better than breaking their hands too i guess. ANyways thanks for the suggestions and for anyone else who replied also, I do sincerily thank you, pretty cool site here, too bad i didnt know about it back when i was an aid in the nursing homes ..=-)
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no-I'm scatterbrained. What a horror story about the oxygen-thank Goid you caught it. I am certain that grown children should care for their parents like they cared for us. I mean making sure the nurses and doctors pay attention. They may not like it but I stick my nose in everything-the squeakey wheel gets the grease. I am very leary of nursing homes. I know my dad was man-handled but I can't prove it. A fellow patient said my dad didn't want to shower-he never does-the water hurts him (he thinks) or the chlorine does so I rinse him with distilled water to get him to let me give him a bath. The patient said he watched a big dark orderly drag him off his bed and all the way to the shower. I believe him-how else would he get two dis-located shoulders and two ruptured discs? That is why I will not put him in the geriatrics ward at the VA. He is not violent -just a big kid. He did go thru a cussing me out spell and we got that straightened out. Daughter is the boss now. So he hangs with his crew-my kids-his grandchildren and they are always up to no good. I hope you find your doctor will put her on the M.S. Contin or Morphine Sulfate E.R. He was so calm but not glazed-just comfortable. The patch nearly killed him because he absorbed it faster-some skin types do-some don't get the medication and they suffer. I read that the patch is on the way out from all the deats associated with it. Good luck and God Bless-Ruth-Menos daughter and caregiver
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No you are fine I'm the one who wasn't understanding. Your mom is fortunate to have you and I can relate to the mistakes with the O2
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Menohardy, Thank you I am glad that you are understanding now what it is I am trying to say, I am not very good at putting my thoughts into written word. lol.
I definitely will ask the Pain specialist about that today. I am actually quite glad she is finally getting to see him because to be honest her regualr Doctor imo hasnt a clue. I remember when my mother was living at my Aunts house and had gotten sick, I would call and ask my aunt how my moms doing and she would say alright, but shes just really tired. well after a couple of days I went over there to see how she was and when I would talk to her, she would mumble incoherently Well at that point against my moms lethargic protests I loaded her into the can off to the Docs. This was the first time I had gone with her to the Doc since she moved from mexico, up to that point my Aunt was going with her or she would go alone. Well when she got called back and the aid came in to take her vitals the aid started taking her blood pressure and kept redoing it and looking perplexed, I asked her if she needed help or anything (its hard not to say anything when you too know what or how something should be done, they hate me there now..lol) and the aid tells me I cant hear anything for her blood pressure, she then tries again and this time she goes, well i think I got it.,..Of course I was like "you think?" at that point i took the cuff and her stethescope (yes wiped with alcohol first :-) ) and took my moms pressure, I understood why the girl was having trouble, her blood pressure was 58 over 40 scary, and her pulsox reading was 74, i couldnt believe it. So the Doc comes in right then and she tells him the numbers and he gets her on oxygen right away, well to keep this shorter, she slowly starts to become more coherent and tells me that every time she comes to her appts the doc puts her on oxygen. So I ask the doctor about it and he says well she needs to bring her oxygen in with her for her appointments..I asked him what Oxygen, and he looks thru her charts again and say Oh I thought I prescribed that to her awhile ago...ugh so yeah im happy she will be having this specialist over see her meds now...small town i live in, not many choices... Once i saw the same Doc in what i thought might be an emergency situation but wasnt sure of, i had severe chest pain, but thought it might be a muscle in my chest but maybe me heart, welll he hooked me up to the ekg, and after a minute tells the aid, call EMS hes having a myocardial infarct (actually he said MRI) he then says actually tell them to send a ALS (advanced life support) crew..he then looks at me and says dont worry, youre going to be ok.. i was like huh..then i got some nitro and some morphine, and was in the ambulance all of 2 minutes when the Medic looked at the ekg the doc gave him and says, you arent having a heart attack..I told the medic that i didnt think so because everytime the driver turns or hit the brakes it hurts worse./.. so unfortunately i got the Doc who probably just squeaked thru all his exams...they still call them guys doctor though..lol
Thanks for your advice and the story about your father, I do appreciate it..and once again my post lives up to my screenname, sorry about that. =-)
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ramblingman-I think I have a better understanding now. Meno-my dad- was taking 60mg of Morphine Sulfate twice a day and after about only a week he stopped nodding off and or getting high altogether. He was absolutely pain free and I had to go out of the states so I put him in a Veterans Hospital short term try out in San Antonio because he was an officer in the military. Somehow he slipped in the shower and a man tried pulling him up by his arms and dislocated both of them and even caused damage to his back again. I think something else happened but thats a didfferent subject. So to stop the pain in back and shoulders he is now on a pump because he is end stage and they are not concerned about addiction as am I-I am like you-I wouldn't care if he was given heroin or dilaud, demerol-he is dying anyway I just want him to not suffer. My point is you know the patch is killing your mom. Menos physicians all agree that MS.Contin ER does not hurt the heart or liver-at least that is what I am told and his liver levels are all normal and his heart is strong as a 15 year old but he takes a beta blocker to keep him from going into fibrilation. So maybe ask your moms physician about MS Contin ER. Meno was normal compared to the patch and Oxycontin and other medications . He never asked for more. His pain was completely under control while he was on the MS Contin-he was not a Zombie. For the first week yes-he was "high" but then he adjusted and was fine for a good year until the incident at the VA. I researched MS Contin ER and people who have dangerous jobs can safely do them after there body adjusts. Drug addicts do not like them because the high they seek doesn't happen after a week or so. Only for the short adjustment period. My brother took one to feel the effect and he said wow-how can he take those and not be on cloud 9?! His then pain management doctor says everyone says this for the first few days then they can't tell they are taking anything-but the pain goes away. So maybe this would help your mother. A word of caution. A person cannot stop taking them without going thru withdrawal every bit as bad as heroin. Meno didn't have that problem because he is getting the equivalent in his pump that doses him automatically but he doesn't know the difference. His doctors said the pain patch is dangerous and like you said will eventually destroy her. I hope I am making sense-The MS Contin ER is safer and not as harsh on the body-so they say but I don't know he has lived longer than they said he would anyway. With the Morphine I think it has added more months actually because it is easier on his system as a whole.. When he could swallow pills his PHD Psychologist said get him off the hydrocodein. He is a Palliative care Psychologist and he said in his experience persons taking that drug seem to die sooner
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Hey Meno, I understand where you are coming from, and I am sorry that your dad had to go thru all of that. As far as my mother is concerned she is of sound mind, and most likely could take care of herself. I am more here as her errand boy I reckon. Up until recently she was living in Mexico and when she first got there 3 years agp she decided to go off the patch because it was too hard to get in mexico, she was off it for almost 6 months when she decided she was in too much painand decided she would come to the states every 3 months and get the patch, she found a doc willing to write it for 3 months instead of the normal 1 month and went back on it. I think that she could have been more succesful if she had a Doctor that she saw regularly (monthly) and was prescribed something less serious than the fentanyl patch. these patches do not add years to a persons life, they kill people. so its not a matter of her being an addict at her age, its about these patches taking away from a more normal life that she can have not being on something that makes her virtually a zombie nodding off all the time. If it was just about her being an addict as you put it, well if she couldnt have a better life on something else, I could care less if she had to mainline heroin to not hurt. But thats not the case, these are taking away from her enjoyment of life, and no I dont want that to be how the last few years of my moms life was spent, medicated to the gills getting nothing out of what were supposed to be her golden years. Sometimes its not right to have someone restrained by medication, this is one of those times.
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I often wonder how much pain will someone subject there loved one (who has no say in the matter )to before they realize that Pain management doctors are being scrutinized in tripliket for over prescribing and giving already depressed patients huge doses of injections of Steiroids and wh knows what else into their spines which work
it's way to their brains , or burn off nerves only to have them grow back and the procedure is repeated? Dad was injured in the service and had part of his spinal cord chipped and then a few years after discharge he had ruptures-then surgery, then more surgery and a rod, then a cage, then 3 years ago the patch which nearly killed him now he is addicted to Morphine via pain pump and he has no pain and out of the clear blue sky his new pain management doctor wants to burn nerves again. I said he is in no pain so when you burn his nerves will you get him off the Morphine I asked? No-he will need that for the rest of his life. Well why burn off nerves that are going to grow back anyway if he isn't in any pain? I said no. The doctor said okay and that was that. His Psychologist and Psychiatrist said this: Never-under any circumstances let your father be subjected to any more injections of any kind. Your father is dying! Let him die painless. Steiroid Injections cause Major Depression in many persons especially the older ones. I thought back to my dad crying for no reason days and weeks after spinal injections. I was balled out by his primary care physician as well. He said he never got a report that you okay'd any procedures on your father! Read this order:. I read it. It was an order for the Pain Doctor to limit all procedures in this 63 year old male to Narcotic' s only
as a remedy to keep this patient as free of pain as possible as he is not expected to recover. Note: Suggest standard dose meter pump. I never read the doctors order I just handed it to the pain management doctor. How stupid of me. I think back to my dads tears and how he screamed while the doctor was inserting large needles in his spine and dad was calling me momma! Help me Momma! Why momma?
I'd like to stick some of that in that doctors back. People. If your 87 year old loved one is dying or 63 or 23-let them die without pain! Please do not subject them to invasive procedures that cause depression or further stress. These nerve burnings and injections are to get working class people back on their feet but I have read horror stories about things going wrong. Who gives a hoot if your mom or dad is an addict at their age? Sorry about the spelling-I am in a hurry to take Meno for a walk before it gets too hot.
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Hey thankyou all for taking the time to answer me. Reverseroles, unfortunately this sleep disorder has actually been around for a long time with her, at least 10 years. She has always been on lots of meds because of degenerative disk disorder, shes had cadaver vertebre put in and fused, but it collapsed, now she has a titanium cage supporting her spine and us in pain a lot of the time. I have talked with her doctor and thankfully she has a appt tomorrow with a pain specialist, maybe he will get her meds in order,
Vivian, sounds like you can partially relate to the fentanyl patch, i know she is on the lowest dosage of them now which off hand i believe is either 25 or .25 Id like her to get off them altogether. I sometimes wonder how much of the pain is from the opiates tricking the brain and how much is from her actual problems. I personally have experienced addiction to lortabs, and had a running script for them for a broken neck (not that bad. lol really) i was always in pain, that is until after 18 months on the pills i decided to stop taking them, it took about 2 weeks to get over them and after that, no more pain. sore once in a blue moon now thats it. I just wish Docs would explain in detail to patients how addictive those patches are, basically like heroin, only stronger and every bit addivtive.
Thanks to all of you again, nice to see people are still out there that have time to help even a stranger.
Craig aka ramblingman
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You need to call the doctor, thats Not normal, safe, or fair to your mother to go thru that. Are you sure shes not having a seizure either? Please stop that patch as soon as you can. Other than that, I hung bells on strings hanging from the ceiling, moms bed, chair, or where ever I needed to hear her. Good Luck.
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