Edited to add: Lynn is late stage Alzheimer's. He was dying a slow death from starvation.....This is our personal experience, and my personal beliefs based on the research I have done. Please speak with your own doctors, and do your own research. We must all make the best educated choices that we can for our loved ones. We will not all make the same choices. None of them are right or wrong... we each must do what we feel is best. And that is what I have done... what I think is best for my beloved Lynn ♥ ..................... First let me say I am not advocating the use of Marinol for all Alzheimer’s victims. Nor am I implying it can help everyone as much as it has Lynn. I am simply sharing our experiences with the hope that it could possibly help someone else.
Briefly, for those who do not know what Marinol is, it is a pill form of medical marijuana. “ Dronabinol, the active ingredient in Marinol, is synthetic delta-9-tetrahydrocannabinol (delta-9-THC). Delta-9-tetrahydrocannabinol is also a naturally occurring component of Cannabis sativa L. (Marijuana).”
You can read a lot more about it on the internet, here is one link http://www.drugs.com/pro/marinol.html
From that site “Dronabinol also demonstrates reversible effects on appetite, mood, cognition, memory, and perception. These phenomena appear to be dose-related, increasing in frequency with higher dosages, and subject to great interpatient variability.
After oral administration, dronabinol has an onset of action of approximately 0.5 to 1 hours and peak effect at 2 to 4 hours. Duration of action for psychoactive effects is 4 to 6 hours, but the appetite stimulant effect of dronabinol may continue for 24 hours or longer after administration.”
Now onto our incredible experience with Marinol. Lynn was put on it for an appetite stimulant because the previous drug he was using, Megace, was too dangerous to continue after he had the pulmonary embolisms. I was hoping for nothing more than for it to help increase his appetite.
It did indeed help with his appetite!!! BUT, what I did not expect was some AMAZING changes. Somehow, someway, it broke some of the the chains that were holding on so tightly to Lynn. The first change we all noticed was that he was able to talk again!!! He has always been able to say “ I love you” it was a struggle, but he somehow managed!
He is not able to carry on a conversation or anything on that grand scale. But, he started chatting again, and often times he said things that actually made sense! For example, he went from only being able to say I love you, he couldn’t even respond with yes or no….. to responding to me. Like while feeding him he would say, “that’s good!” or “that’s too hot”. He of course says things that make no sense at all, but the major point I am trying to make is, he went from not being able to talk hardly at all, to talking all the time!!!!
He is very animated now. He chats and interacts with people and things. When we watch TV he points at certain things that he finds funny and laughs right out loud!! If I am in his way, he either motions for me to move or tries to move so he can see around me. Proof to me that he is indeed watching the tv and not just lost in a stare.
Before when I took him to music shows he just sat there. He often smiled at my animations, but that was about all I could get for a response. NOW when I take him he not only smiles but laughs right out loud. He tried to clap his hands, he taps his feet.. And he said “this is fun!” with a huge smile on his face. I was floored!!! Not only was he responding, but he was experiencing fun, and he KNEW he was having fun!! Oh … My…. God!!!!!!
Many things are happening, each as shocking as the first… all incredible blessings, and to me, nothing short of miracles!!!
He hasn’t been able to feed himself at all in well over a year. Not even lift a cup. Now he often times will take his cup off his tray and take a sip of his drink. He shakes a bit, and sometimes it spills a bit, but who cares? He went from not being able to do anything to being able to take a drink all on his own!!!
The other day on one of our daily walks, out of the blue, and much to my shock, he READ a sign out loud!!! It was a posting about the activities, it was 4 words, and he said them all perfectly!!! He hasn’t been able to read in a very long time!!!
Clearly he has always been able to, but Alzheimer’s locked that ability away. Somehow the Marinol is opening up these doors and letting parts of Lynn to resurface.
To some these are not big deals, I am here to tell you that to me, THEY MEAN THE WORLD!!!!
My husband went from a basic vegetable state. Where he could hardly talk, could not move at all, where he had a blank stare 90% of the time…. To staying awake and alert for my entire visits... To responding and interacting with me again!!!
(((Nikki))) that is such wonderful news! This has been brought up as an option for my DH, and I have seriously considered it. If nothing else, it may make him more confortable. I'm blessed to have an "out of the box" thinking advocate on my team, and this is something I am going to try. Couldn't hurt or harm, right? Alzheimer's throws all of our pre-conceived notions out the window, and if I can find anything to make DH more comfortable, I'm all in! Thanks for sharing your experience with us! God Bless!
Emily, it is legal in all states. One should have no problem getting it. It comes in pill form and is much safer than most medications given.
Edited to add: I was told by Lynn's doctor that this drug is "much safer" than the medicines he was previously on. This included Seroquel. This is after he almost died from pulmonary embolisms caused by one of his other medications. I do NOT want to imply it is safe. NO DRUG IS SAFE! We all must make our own EDUCATED choices on how best to treat our loved ones ♥
Diane I hope it works as well for you DH as it has for Lynn. Is certainly worth a try! Best of luck!
I understand this is a serious subject, and I don't mean to offend anyone, but the first thought that came to my mind was - If it doesn't work for them, we can sure use it - Bet it will work wonders for our stress.
Seriously, Nikki, that is just great.....that compound seems to have many good uses.....I know it helps with the pain from MS. Who knows what else it could be good for....
Joan you are not alone in your thoughts! Funny story, when the staff all started noticing how much better Lynn was truly doing the heads of staff came up to make notes....they were amazed at the personality changes! I told them I thought every Alzheimer's victim should be given it....and then I said and a lot of your staff could use it as well!! LOL
Thank you all very much! Your support means a great deal to me. I have been wanting to write about this for sometime....but I was hesitant....because this is an older crowd and I wasn't sure just how far out of the box the thinking would be here...... I SHOULD have known better! Above all, it is support we all find here <3
He is doing so well it seemed tragic almost to not share if it could help someone else too! You guys are the best! :D
What a wonderful gift you have received, nikki. But you mention it is legal in all states? I didn't think so. My friend was telling me that she had heard itms good for glaucoma, however her dh has severe glaucoma and she can't get it. I told her to go to the bronx and get it on the street if its that good! Ii don't know why its not used for manny thhings, eg, nausea during chemo.9
" A pill known as Marinol has been legal and approved by the Food and Drug Administration for use with a prescription anywhere in America since 1985. "
Thanks for sharing Nikki. I think folks are mixing up medical marijuana (the stuff you smoke) with the pill Nikki is describing. The former is legal only in 15 states and DC, the latter everywhere. In the states medical marijuana is legal, there are different rules about home-growing, dispensing, etc.
I think the pill contains the primary components of pot (THC); but pot contains over 300 compunds.
Pot is supposed to be better for AD than Aricept: "Research done by the Scripps Research Institute in California shows that the active ingredient in marijuana, THC, prevents the formation of deposits in the brain associated with Alzheimer's disease. THC was found to prevent an enzyme called acetylcholinesterase from accelerating the formation of "Alzheimer plaques" in the brain more effectively than commercially marketed drugs. THC is also more effective at blocking clumps of protein that can inhibit memory and cognition in Alzheimer’s patients, as reported in Molecular Pharmaceutics: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562334/?tool=pmcentrez "
Thank you Nora, I all most didn't...... I just hope it can be the miracle for someone else as it has been for Lynn. Heck at this point, even if it just makes them a bit happier to me it would be worth it! Now if I can just get a prescription for me <big grin>
I was just sitting down to dinner tonight when I got a call from the nursing home. As soon as I saw the number, my heart about stopped, just as it always does whenever they call me. However, this was FANTASIC news!!!! The nurse said Nikki, Lynn is asking for you by Name!! And he wants to talk to you!
WHAT!? and Oh... MY.... God!!! He hasn't said my name in forever and hasn't talked on the phone in over two years!! We had a great conversation! Some I didn't understand and it made no sense... but who cares? He wanted to talk to me! He asked for me by name!!! And he said " I miss you baby" *gasp and tears"
I continued to talk to him as I was getting in my car to go see him. He wanted to see me, you can bet I was going! Dinner forgotten, my sister and I went to visit with him. What a wonderful visit it was! He was animated and talked our ears off. My sister who hasn't seen him since he started talking again, knew that I said how much better he was doing, but was stunned when she was actually witnessing it!!!
He had us laughing right out loud. I will never forget the gift of tonight with Lynn ♥
Nikki-one of my daughters works with a large dementia care chain of facilities. I have been sharing your and Lynn's experiences with marinol and she is following with interest. Our local hospice uses the drug. Keep up the good work.
Thank you Nora ♥ Because I go daily I know a lot of the spouses there. They too of course have noticed the changes in Lynn. They ask me about it, and I tell anyone who will listen how wonderful Marinol has been! They can see it with their own eyes!!
My hope is they will be able to get past the fact that it is synthetic marijuana. I do not know why our society seems to have such a hang up about it? They seem fine with dangerous opiates, but you say marijuana and people seem to freak out. It is much safer than many of the AD drugs we give our loved ones.
A couple of spouses are in the "thinking" about asking their doctor about it.... to me, in late stage, ANYTHING is worth a try. One can't know how it could help their loved one unless they try it. Bless you daughter!! Anyone who does this type of work is an Angel on earth in my book!!
Edited to add: I do believe that marijuana is safer than most man made drugs. That is my belief based on personal experience as well as my first hand knowledge of many people who have had to use it. Smoked marijuana is not legal in my state or I would have asked for that instead. For most people who have to resort to this for some comfort or treatment, they do not have the luxury of worrying about "long term effects". I am not advocating recreational drug use!! But I do believe for many, there is a great advantage to using it. This is MY belief. Again, please do your own research and speak with your doctor.
Hi, Nikki. Several members contacted me to ask about this thread.
I am, of course, thrilled beyond words for you and Lynn. And there is indeed reason to believe that Marinol may be helpful in treating *some* symptoms associated with Alzheimer's in *some* patients.
However, it is NOT safe, and anyone considering trying it should be aware of what is (and is not) known.
Our understanding of the cannabinoid (CB) system is still very much in its infancy. However, it is known that the cannabinoid system is widespread in the central nervous system and plays essential roles in a range of neurophysiological processes such as pain, appetite, and cognition. The CB system includes the endogenous cannabinoids anandamide and 2-arachidonoyl glycerol, and at least two cannabinoid receptors (CB1 and CB2).
The CB1 and CB2 receptors are targets for the psychoactive cannabinoid delta-9-tetrahydrocannabinol (THC) found in marijuana.
Acute and chronic exposure to marijuana are associated with dose-related cognitive impairments to attention, working memory, verbal learning, and memory functions (immediate recall, short-term memory, and memory retrieval). These impairments are *not* completely reversible when marijuana use is discontinued.
Marijuana use is a risk factor for the development of psychotic symptoms, and also thought to be a risk factor for the development of psychotic disorders such as schizophrenia. Some experts believe there is a *causal* relationship with schizophrenia. (Note: given what I've been reading, I would have thought that someone would have started looking for a causal relationship between chronic marijuana use and Alzheimer's, too, but if anyone has studied this potential link, I haven't found it.)
There are known gene mutations which can make the people who carry them much more sensitive to the ability of THC to induce psychoses and cognitive dysfunction.
THC is the primary psychoactive ingredient in marijuana. At least two of the other 60-plus phytocannabinoids found in marijuana are also bioactive. One of these, cannabidiol, is thought to help *minimize* some of the potential adverse effects of THC. I.e., THC by itself can cause more problems than marijuana.
As you have noted, the synthetic form of THC is a legitimate drug, approved by the FDA for a number of applications (such as control of nausea and pain during chemotherapy, and treating AIDS anorexia), and sold under the name Marinol (dronabinol).
During clinical trials of marinol for such applications, one-third of the patients reported adverse effects involving the central nervous system, including abnormal thinking, confusion, amnesia, depersonalization, hallucinations, paranoid reaction, anxiety/nervousness, ataxia, dizziness, euphoria, and somnolence.
Marinol can also cause cardiovascular problems, including tachycardia, palpitations, and, less frequently, hypotension.
Seizures and seizure-like activity have been reported both during clinical trials and post-marketing.
Marinol is known to interact with many commonly-prescribed drugs, with some of the interactions having the potential for very serious adverse effects.
Abrupt discontinuation can cause unpleasant withdrawal symptoms, including irritability, insomnia, "hot flashes", sweating, rhinorrhea, loose stools, hiccoughs and anorexia.
Stupid software is still objecting to the length of my posts.
With regard to dementia:
There is a growing body of evidence that the cannabinoid system is involved in the neuropathologies of amyloid-related diseases such as Alzheimer’s, Huntington’s, Parkinson’s, multiple sclerosis, and Down syndrome. For example, the number of CB1 receptors is dramatically reduced in some parts of the brain in Alzheimer's and Huntington patients. In post-mortem AD brains, CB2 receptor mRNA was found to be upregulated in the hippocampus and in microglia and astrocytes surrounding neuritic plaques; and CB2 receptors were also expressed within neuritic plaques.
Because of the broad impact of endogenous cannabinoids on neurotransmission, various cannabinoid drugs, including marinol and nabilone (both of which are available in the US), and Sativex have been suggested as possible treatments for symptoms associated with these diseases. (Sativex -- which is a combination of THC and cannabidiol -- is available in several countries, and was very recently licensed for development in the US. An aggressive program of Phase III clinical trials for select applications is under way.)
The vast majority of the clinical studies I've found on cannabinoids in patients with neurological and psychiatric disorders involve multiple sclerosis and schizophrenia. Results from numerous studies on both disorders have produced conflicting results. Most studies on schizophrenia patients, for example, found that marijuana or THC worsened their psychoses. However, in some studies, some patients were not noticeably affected, and in a couple, a small subset of patients actually improved on marijuana and/or THC. (I wonder whether this is, perhaps, related in part to the known effects of genetics on sensitivity to THC-induced responses.)
There have been a handful of studies on using cannabinoids to treat behavioral and motor symptoms in neurodegenerative disorders that cause dementia. None of them evaluated the impact on cognition or memory.
Two tiny clinical trials have been done on Marinol for treating behavioral problems in dementia patients.
In one, 15 Alzheimer's patients received 2.5 mg bid of the drug for six weeks, to help improve appetite. Of the 15, three experienced severe side effects (grand mal seizures, serious intercurrent infections) and had to drop out, and a fourth died of a heart attack. The drug did help decrease behavioral problems in the remaining eleven. (Note, please, that the "black box warning" on antipsychotics is due to sudden deaths of elderly dementia patients from heart attacks and infections.)
In the second trial, 6 dementia patients (5 Alzheimer's and 1 vascular dementia) with night-time agitation and behavioral disturbances received 2.5 mg at bedtime for two weeks. Agitation, aberrant motor behavior, appetite disturbances, irritability, and night-time behavioral problems improved, and there were no reported adverse effects during the two weeks.
To these studies, I would add a "case history" from the Alz Assoc. One of my favorite members there has AD. He is a passionate advocate of marijuana for controlling pain, muscle spasms, and anxiety, and has used it himself for quite some time for these symptoms. (Cannabidiol is a known anxiolytic.) He developed severe behavioral problems (anger and aggression) and has been on fairly high doses of Seroquel to try to control them. When last heard from, the Seroquel was not helping as much as it had, and he is no longer able to participate on the forums.
Nabilone (which is another cannabinoid drug with a pharmacological profile similar to marinol) was successfully used to treat agitation and restlessness in an Alzheimer's patient who had not responded to trazodone, quetiapine, or olanzapine. No side effects were reported during three months' continuous treatment. (Nabilone is known to have the same general potential for adverse effects as marinol, including convulsions and serious cardiovascular problems.)
A survey found that roughly 45% of Parkinson's patients who have used marijuana reported improvement in motor symptoms such as rigidity, tremor, bradykinesia, and dyskinesia. In a clinical study, a single dose of nabilone reduced dyskinesia by 22% in 7 patients. Marijuana extract administered for four weeks to 19 Parkinson's patients had no effect on dyskinesia.
A clinical trial for using marinol to treat behavioral problems in Alzheimer's patients is planned in Europe. The patients will be hospitalized for at least part of the trial (it's not clear how long -- schizophrenia patients have been hospitalized for two weeks in clinical trials on marinol), presumably due to concerns about the potential for seizures, heart attacks, and life-threatening infections.
Marinol was approved by the FDA in 1985 indicated for side effects of chemotherapy such as vomiting. I'm not aware of it being prescribed for AD and thought the idea of it being an anticholinesterase as one line of thought was unproven.
Having said that the germaine line of reasoning in this doctor's prescription of an approved drug for an unindicated application may not be the potential side effects which exist in a vast array of prescribed medicines and those off the shelf such as Aspirin (which is an NSAID), nor is it the virtual vacuum of formal clinical trials for the multiple prescriptions many patients in these situations are on (the combined pharmacology of which is in almost all cases anecdotal which is a travesty)- it is precisely what was described. An attempt to stimulate the appetite and avoid Megace which was considered too dangerous.
The scientific community in my view does what it does best. Investigate the science. This situation is not as much about science as it is about viseral life. Nikki's husband is having side effects that are worth more than the weight of the Salk institute in gold. By whatever means and with the known change in medications (Nikki does not advocate the use of Marinol which was her opening statement) she is in a heaven where her loved one now knows her and talks her ear off. We can all try measuring what that is worth when the patient was all but unreachable prior to the prescription change.
I'm neither an advocate of Marinol nor against detailing it's dangers which is prudent. I simply want Nikki to continue the story of her experience with what the doctor prescribed. She has already expressed uncertainty about posting these experiences - yet they are beyond valuing for both her and her husband. And I'm sure for all of us it is a joy to follow the humanity of this happy story.
Sunshyne, good to see you! ♥ I appreciate your research and your input. I always have.
But, I do have to say I find some of the concerns laughable. Now please do not get me wrong... I am not trying to argue or go tit for tat on research pros and cons. What I find laughable is these concerns in a TERMINAL, Late Stage Alzheimer's patient. From your post..."During clinical trials of marinol for such applications, one-third of the patients reported adverse effects involving the central nervous system, including abnormal thinking, confusion, amnesia, depersonalization, hallucinations, paranoid reaction, anxiety/nervousness, ataxia, dizziness, euphoria, and somnolence"
Really? This is a concern how? He has Alzheimer's!!! and has or has had every single one of those problems listed already. Which makes me wonder, how they could even know if this was a concern with an Alzheimer's patient? It just can't get much worse than he was. He was in a vegetative state 90% of the time and slowly starving to death. In contrast, to me....the worry of side effects is minuscule.
Every single drug has adverse reactions and side effects. NONE of them are *safe* ....Take Namenda for instance....
"Namenda …Some of the milder side effects may include joint pain, weight loss, anxiety, rapid heartbeat, nausea, vomiting, swelling of the hands or feet, weakness, dizziness, fatigue, swelling around the eyes, frequent urination, aggression, constipation, diarrhea, loss of appetite and being easy to bruise or bleed. Some of the more serious side effects may include hallucinations, seizures, confusion, sudden numbness, chest tightness, problems breathing, fever, fainting, blurred vision, lack of coordination and less-frequent urination. If you experience serious side effects, you'll need emergency medical help"
Lets take a look at Seroquel.... "WARNING: INCREASED MORTALITY IN ELDERLY PATIENTS WITH DEMENTIA-RELATED PSYCHOSIS Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death….(etc etc) Seroquel (quetiapine) is not approved for the treatment of patients with dementia-related psychosis"
Side effects Constipation, drowsiness, upset stomach, tiredness, weight gain, or dry mouth, Dizziness or lightheadedness, restlessness/constant need to move, shakiness (tremor), signs of infection (such as fever, persistent sore throat), mental/mood changes (such as increased anxiety, depression, thoughts of suicide), difficulty swallowing. fainting, fast/irregular heartbeat, seizure, severe dizziness. This medication may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Quetiapine may rarely cause a condition known as tardive dyskinesia. In some cases, this condition may be permanent. Tell your doctor immediately if you develop any unusual/uncontrolled movements (especially of the face, lips, mouth, tongue, arms or legs). etc etc etc
My point is, ALL of these drugs have serious possible side effects. Seroquel frightened me to death!! Yet it seems to be a standard AD drug even with all of its dangers.
As I did state, I am not advocating, just sharing what has been nothing short of a miracle for Lynn. We all must make choices about what we feel is best for our loved ones. I certainly didn't want Lynn on Seroquel, but I had very little choice. I didn't want Lynn on Megace either, Yet neither did I want to watch him slowly starve to death. They believe the Megace was a large part of the reason he had the pulmonary embolisms. He can no longer take it.
I did A LOT of research, and I asked that Lynn be put on the Marinol. As I stated, I asked that he be put on it for an appetite stimulant. It DID increase his appetite, he has gained 13 pounds!! The rest, is nothing short of a miracle to me.
If God forbid, something did happen to Lynn that was proven to be from the Marinol..... I would not regret my choice. I would in fact do it again! Since December when he was put on it, I have seen aspects of Lynn I NEVER thought I would see again! Research and scientist told me I wouldn't. YET, HERE HE IS!!! Saying my name!!! Laughing!! Reading!! Talking!!! And much more…..Well worth any cost to my thinking.
I would rather have just these few months with him as he is now, than 5 years of him in a vegetative state completely lost to me. Having said that, he has not had one bad effect from taking it for over 3 and 1/2 months. Everything has been BETTER! and continues to improve!! I hope and pray that we have a long time to enjoy these miracles together! ♥
That is me, and my choice. We each must make our own choices. Lynn is late stage and there isn't a cure in sight. My goal then, can only be to make what time he has left as good as possible. I am grateful beyond measure that I stopped listening to science and followed my heart. ♥
As always, Wolf I thoroughly enjoyed reading your post. To me you said it best with this line..."The scientific community in my view does what it does best. Investigate the science. This situation is not as much about science as it is about viseral life. Nikki's husband is having side effects that are worth more than the weight of the Salk institute in gold." LOVE IT <big grin>
I will continue to share our story. At times I feel I might just bust from joy............. a far cry from how I felt just a few months ago!! Marinol has helped unlock some of the chains that were binding Lynn. In doing so, it also let some light into the dark abyss that my life had become. The science behind it doesn't really matter to me. I am much too busy enjoying my time with Lynn!!! < huge happy smile>
To my way of thinking-when a loved one is in the final stages of a terminal disease it is time for the heart to take over. Clinical science can do no more. No more worry of possible side effects of treatment. Why not accept each good day as a gift? Indeed-why question "why". Nikki-all my love to you and Lynne and thank you for sharing these precious moments of joy.
In the never ending search for something/anything to turn this disease around or stop the progression, I was very excited about Nikki's posts. I was ready to contact DH's doctor to ask for it and I was one of the people who contacted Sunshyne. I trust her research and accuracy in reporting. My DH is in the moderate stages and still pretty functional. What she reported changed my mind about asking for it for my DH but if he were in the stage Nikki's DH is in, I would definitely try it. I'm still very excited for her and the wonderful changes in her DH.
Nikki, as I said, I am thrilled by Lynn's response to the drug. Nothing succeeds like success.
I am simply pointing out that other ADLOs may not be so lucky.
The percentage of *nondemented* patients reporting severe central nervous system side effects from Marinol was extremely high -- far higher than the percentage of demented patients reporting CNS effects from Namenda. One should look at frequency with which the adverse effects were reported and the general health of the patients reporting them, not just a list of infrequent and rare adverse effects seen in patients with an advanced neurodegenerative disorder. (Remember, Namenda was studied in patients with moderate to severe dementia.)
Moreover, in studies on patients with diverse health problems, the range of responses for diverse symptoms was consistently very wide, often with roughly half of patients being helped, and half being made significantly worse. I.e., it would not be at all surprising for one ADLO to respond well to Marinol, and another be seriously harmed.
And most importantly, Marinol carries the risk of seizures, heart attacks, and sudden death for ADLOs. For 25% of patients in a study to drop out due to such severe adverse effects over such a short period of time is highly unusual. It was a very small trial, so perhaps the numbers are skewed. However, it's very unusual for ADLOs to be hospitalized during a drug clinical trial, so clearly the people planning this new Marinol trial are seriously concerned about the safety issues. I.e., when sufficiently large studies are done, it's quite likely that Marinol will carry a "black box warning" just as the antipsychotics do -- or even be banned for use in this particular patient population.
I believe it is very important for caregivers to make informed decisions. A decision is not "informed" if the caregiver believes a drug is safe.
Even when a caregiver elects to try a given treatment, it is essential that the caregiver be aware of any serious adverse effects that could develop, in order to keep an eye out for the first signs they are developing, to nip them in the bud before permanent damage is done. I've seen far too many caregivers distraught over what they believe is the Alzheimer's progressing when, in fact, the symptoms have turned out to be caused by a drug.
Surely we all want the medicines we authorize for our loved ones to improve their quality of life, not make it worse?
And I've read far too many posts by caregivers anguished over the sudden death of a loved one after they authorized the use of an antipsychotic without ever having been told the potential for these drugs to cause death. It is one thing to consciously make the decision that the potential for improved quality of life is worth the risk of shortened life, and another thing entirely to live with the guilt of having unwittingly cut your loved one's life short.
I am well aware that you didn't have much choice when you authorized Marinol for Lynn. It has been beneficial beyond your wildest dreams, and that's wonderful. But even you should take a close look at the potential adverse effects to identify any that would be of concern in your particular situation. For example, if I recall correctly, you had a lot of trouble with anger and aggression, and Marinol is well known for triggering psychoses. If the aggression rears its ugly head again, it might be very helpful to know Marinol may be the cause.
And last, but not least, it appeared from your posts that you are not aware of the risks Marinol poses, and have possibly been encouraging others to try it, reassuring them that it is "much safer than most medications given". How would you feel if someone you know -- Dazed, for example -- believed you and put a loved one with mild or moderate AD on it and the loved one was seriously harmed?
Nikki, Thank you so much for informing me that there was this choice of medication out there and available. It is too late for my DH, but I have friends that are very excited about trying this medication with their loved ones. Each individual is responsible for checking side effects of medicines, every intelligent adult knows that without being told!!!! Those of us on this blog know that Lynn is in late stage and therefore understood that any medication that might help his comfort level would be worth trying. As you clearly expressed, this was your story, we usually only hear the negative outcomes of some medicines, I think it is very useful information to hear someone's story of a positive outcome of a medicine that has been approved by the FDA for use. Thanks for posting it, and please keep us up to date.
((Nora)) I have never forgotten your golden advice and it is something I hold deep in my heart to this day. . Science has no cure. Even the drugs they hope can slow the progression are iffy. We are left with little that can help our loved ones. Where every Alzheimer’s victim reacts differently to everything from medications to behaviors, there is no clear cut treatment. Having said that, all any of us can do is to follow our hearts.
((Dazed)), you bring up a valid point that I was remiss in stating in my previous posts. If Lynn were still functioning and not slowly starving to death….I never would have been desperate enough to do as much research as I have done. And therefore, I never would have even discovered Marinol. If he were still functional, I am not sure I would have tried the Marinol either. I would have to do some thinking on it….. As I didn’t want him on Seroquel either, but the benefits far outweighed the risks, so I did put him on it.
I have been thinking about this a lot as you can imagine. I am well aware of risks. They are a possible problem at best. I liken this to every choice we must make for our loved ones and even ourselves when it comes to medical choices. Not just medication, but also surgeries to help improve our lives, or even save our lives carry immense risks. Some even have high risks of death.
I am thinking of my first brain surgery for my Trigeminal Neuralgia. The disease is not fatal. It is just so painful that at times you wish it was. My family and Lynn had HUGE concerns that I was even considering open brain surgery.
The risk include “General Risks: These include general difficulties, such as bleeding, infection, stroke, paralysis, coma and death. No surgery is without risks. General complications of any surgery include bleeding, infection, blood clots, and reactions to anesthesia. Specific complications related to a craniotomy may include stroke, seizures, venous sinus occlusion, swelling of the brain, and CSF leak. The most common complication related to MVD is nerve damage, which varies depending on the nerve being treated; these include hearing loss, double vision, facial numbness or paralysis, hoarseness, difficulty swallowing (dysphagia), and unsteady gait.”
The risks were high. And needless to say, my family was frightened beyond measure. In truth so was I. But, the surgery had a high success rate and there was a chance that it could end the pain that was destroying my life. At that point, it was early in my disease and I didn’t have the coping abilities I do now. In truth, death didn’t sound so bad. THAT is how desperate I was. I HAD to try, and reluctantly and full of fear my family backed my choice.
It turned out bad. I did end up with a lot of the complications listed and I have more pain today because of that surgery. But, it was a risk I had to take. It was my best option at the time.
Lynn can not make these difficult choices for himself. I must do them for him, a responsibility I do not take lightly. I consider caring for Lynn an honor that I do in love. But, it is also my biggest burden. Something I think everyone here can relate to.
So my point is, we all must make difficult choices for our loved ones. Ones we wish we didn’t have to make. We each must weigh the risks and then make what we feel is the best possible choice for our loved ones.
Seroquel was not the best choice for Lynn. The risks were high. But, I had to weigh the risks against the benefits. The same is true with Megace. I knew how dangerous the drug was and I knew it carried a risk of causing pulmonary embolisms. It scared me to death! But these were possible risks. The fact was, Lynn was dying from starvation. I was left with the choice of possible risks, or certain death. I chose to put him on the Megace. Even though he did develop the pulmonary embolisms, I would still make that same choice. At the time, it was my best possible option.
The same is true now with Marinol. Starving to death is painful. Painful on Lynn I am sure, but also beyond measure painful for me to have to witness. The possible risks of the drug mean nothing at this point. He was already dying, there isn’t a worse risk than that.
Marinol “tricked” Alzheimer’s and did increased Lynn’s appetite. More importantly he enjoys eating again. Even more important to me, is that he now can express himself and communicate with me.
I do not advocate Marino, nor do l feel it is the best option for all Alzheimer’s victims. In early to mid stages I would need a whole lot more research done before I would consider it as any form of treatment. But for late stage Alzheimer’s, death is certain. And for some poor souls death would be a blessing.
Until you are living the hell of watching the love of you life in the late stages, one just doesn’t understand. When you watch them disappear into a vegetative state, nothing but a blank stare, little to no communication, bedridden and totally helpless…….. The focus is no longer on trying to fight the disease. It becomes more about giving them the best comfort and quality of life we can for as long as they have left.
I gave Lynn Marinol to help make him more comfortable and so he wouldn’t starve to death. In trying to bring him comfort, we were given a miracle. One I do not question but accept for the miracle it most assuredly is. Lynn is happy!! And he can express to me that he is happy!! And THAT makes me happy. ♥
Where I do not advocate for it now….. In my future, “after” I can see myself advocating for its use with late stage Alzheimer’s. I am keeping notes, as is the nursing home and I am taking video to document the amazing changes.
I was writing a reply in word, so I did not see the latest posts.......
"And last, but not least, it appeared from your posts that you are not aware of the risks Marinol poses, and have possibly been encouraging others to try it, reassuring them that it is "much safer than most medications given". How would you feel if someone you know -- Dazed, for example -- believed you and put a loved one with mild or moderate AD on it and the loved one was seriously harmed? "
Wow, that cuts deep.
I can not post a reply now as I am too upset and hurt.... but I will say, I am not a moron. I do indeed know the risks Marinol poses. And I DID post in the very first post a link to the medication information that CLEARLY states the side effects. I am not sure what else I could have done? There are risks with all medications. It is up to each person to make an EDUCATED choice as to what is best for their loved one. I perhaps shouldn't have, but DID assume everyone was smart enough to consult their doctor and do their own research to make those educated choices.
Joan, please close this thread. I was trying to share with my family here the miracle that we were given. I do not want to take that gift and turn it into a pissing contest. I will continue to share our story on facebook for those who would like to follow it.
Many people are reading what you wrote, not the links you posted. And you said, in your posts:
"It comes in pill form and is much safer than most medications given."
and
"It is much safer than many of the AD drugs we give our loved ones."
They retain the impression that it's safe. And I know that because several of them have contacted me to ask my opinion. A couple of them commented that there was too much to wade through in your links, and some aren't sure which sites are reliable and which aren't. That's why I posted here.
But of course, your story is of significant interest to others facing the same problems you do, and I'm sure everyone wants to know how Lynn does.
Nikki, please keep posting your comments on this thread. As a medical doctor I am very interested in both your research and the results with Lynn. I haven't yet figured out how to use facebook, so I don't go there (I guess I'm too old a dog to learn new tricks).
Nikki - I am glad you found something that brought life back to Lynn, if just for a season. As you said, he was in the end stages and this was a last ditch effort. I do hope the doctor will document all this. I do not know if you are donating his brain after death, but if you could get researchers interested they might be able to discover what chemical in the marinol created the changes. I believe in the end they will find many causes of AD and whatever caused Lynn's may be affected by something in marinol. We are all encouraged to participate in clinical trials because without them no progress will be made.
In a Korean trial a compound in curry was found to help, yet no other studies have been done. I have my husband on a tumeric supplement even though there are warning signs about it if you get too much. Progress will not be made for the future without taking chances now. Namenda is highly touted but if I had left my husband on it last year I believe he would be low functioning instead of high functioning - the side effects he suffered would have had him sitting in a fog all day.
I am happy for you. Please do not be upset. In fact, look at it this way: you speaking out has opened a new communication here and maybe elsewhere. Marinol will now come up as a thought to others when their loved one is in the final stages. It can maybe be an option to add a little more hope for quality when there is nothing else.
I hear stories all the time of people with cancer where chemo and radiation have not helped.They have turned to last ditch efforts despite all the dangerous warning signs. You are no different Nikki, so enjoy the miracle as long as it last. Enjoy your Lynn.
Thank sunshyne for her info because she has educated others here where ones like Dazed got caught up in your excitement and sunshyne helped her to think it through - just like you did before going with the marinol. I think people in science tend to always use science instead of common sense or heart when it comes to what to try. Some people are just more cautious in nature - not willing to try things 'out of the box'. There is a place for all in this world.
Reminder: just because aricept, galantamine, exelon, namenda, serquel, and others work on one person does not mean it will work for others. AND - they all come with risk. Galantamine (Razadyne) carries a strong warning with it: has been know to cause heart attacks. I had to consider that before letting my husband take it.
I agree with marsh. We need this information, Nikki, because we're all heading for the end stage sooner or later and need to know what our last ditch options are.
Nikki--I urge you to keep posting about this as well. One of the most difficult aspects of my hb's dx is that I feel I am faced with making potential "life and death" decisions for him, and it is a daunting task to hold in your hands, literally, the life of the person you love most on this earth. Recently, I took the leap and voluntarily had him admitted for an inpatient stay to have his medications adjusted. I didn't know whether he would ever come home again, but he did, and so far there has been a big improvement (still some kinks to work out, hopefully they will be soon). My point is: after considering all the possibilities, we each have to make our own decisions based on what we think is right for our LO's. I, too, am seeing better ability in communicating, memory, attitude, etc.--things that I had thought were lost were not; they were still locked inside his brain, and apparently, with the right combination of drugs, are now accessible again. I am hearing him ask questions and talk about things that I haven't heard for about 2 years now. So, my conclusion is, sometimes taking a chance pays off.
Some of you will be interested in the thread about the chemical "anatabine" from cigarette smoke on the Alzheimer's Association's message board "Medications/Treatments for Alzheimer's and Other Related Dementias" http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/7584029887
"In a Korean trial a compound in curry was found to help, yet no other studies have been done."
Charlotte, if you're talking about curcumin (turmeric), this is a very active area of research -- although perhaps not moving as quickly as we'd like. To date, clinical trials on AD have proven to be disappointing. However, studies have shown that plain oral curcumin supplements are not very bioavailable and are quickly metabolized. Some of the most exciting research is being done by a group at UCLA. Cole's group is developing formulations that appear to be better able to consistently raise the levels of unconjugated curcumin in the serum and brain.
See, e.g.: http://jpet.aspetjournals.org/content/326/1/196.long http://www.ncbi.nlm.nih.gov/pubmed/20092313 Whether these levels are high enough to confer any benefits to ADLOs remains to be seen. Note the statement in that abstract, "In both healthy individuals and osteosarcoma patients, high interindividual variability in pharmacokinetics and nonlinear dose dependency was observed, suggesting potentially complex absorption kinetics."
There is a clinical trial on treating AD that is currently recruiting ... in India. http://clinicaltrial.gov/ct2/show/NCT01001637
Dr Cole remains cautiously optimistic.
The formulation that is being tested in the trial is already commercially available, LongVida from Verdure Sciences.
Nikki God Bless you honey, it is to late for my Bob but if just one person can get a little relief from your post it will be great, I wish I knew about this while he was alive I for one would have done anything to keep him here with me as long as he wasn`t suffering. Love you
Dear Nikki I am so sorry that you have been distressed by some of the input here, strange because you are speaking about a legal and medically approved drug. Here in Australia it is not legal but during my husbands illness (ALS/FTD) I went on a search for an illegal supplier of said marijuana (in tobacco form) By the time I found one ( wasn't easy at my age) his diaphragm muscles had atrophied too much for him to be able to inhale! I wished I had begun my quest sooner, it would have been worth a try just as we try all the other medications in the hope that they will help. All the best to you and Lynn, may the good results last a long, long time.
Nikki, I am so glad you shared your real life positive experience with Marinol. I have filed it away for future use if needed. Please do not stop posting. Please keep us up to date. And mind you, these pleas are coming from a spouse who is so opposed to pharmacueticals, I have so far only gone along with nutritional and vitamin supplements. Knowledge is power and what you have shared adds to my knowledge base.
I'd like to share an entry from my blog just to demonstrate that research and real life are 2 different animals, and that these pharmacology decisions are difficult for all of us:
January 11, 2011 Aricept / Exelon - no thank you? I have been mentally debating for months whether we are doing the right thing in not giving DH the Aricept / Exelon drug (cholinesterase inhibitors). Today it seems I can rest assured we have made the correct decision. This study indicates their use is associated with clinical decline: http://archneur.ama-assn.org/cgi/content/abstract/68/1/58?view=short&fp=58&vol=68&lookupType=volpage
A picture is worth a thousand words:
[I can't copy and paste the graph. you can go here to see it : http://downtherabbithole-mary.blogspot.com/2011/01/aricept-exelon-no-thank-you.html] You can click on the graph to enlarge it.
These scientists have basically concluded that anyone runnning a clinical trial should not have patients that are taking these drugs - the declne from these drugs will interfere with trial results. Hmmmmm......
But wait! Here is anecdotal evidence of a woman saying "that after she started taking the medication it felt like a bag of cotton balls had been removed from her head.": http://www.reporternews.com/photos/2011/jan/10/75331/
After talking with Joan, and many of you here as well in private messages I have decided that I will continue to post about the changes I am blessed to witness in Lynn. I will however only post about Lynn and I, not debate medical facts or fiction. After all, I started this thread as the title states, Our personal experience. It was not meant to be a research paper, so I did not state all medical facts. I leave that to you very intelligent, well equipped wonderful people to investigate for yourselves. ((hugs))
For the first time in simply ages I am happy, and I want to share that delight with my family here ♥ I thank you all sincerely for your support, compassion and well wishes. I will reply to the most recent post you have all written at a later date…. For now I need a little break… thank you all for understanding ♥
sunshyne - I have read about the ongoing trials on tumeric and realize the supplement he takes is not as high as they are using nor absorbed that good, but when I ran out I believe I noticed a slight difference. His neuro is open to trying any supplements as she realizes the current drugs will do little to help in the long run. As she says: if you think it might help and won't hurt him, try it.
Thanks Nikki, always see the positive's you bring to others lives, and go from there. I am praying that you and Lynn continue enjoying the very positive success of this medication. I am so glad to know that this medication is out there along with the Alz meds. I am on this website to hear personal stories and learn from them so I can help others that are now going through this. Thanks again.