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By tomhuth On 2016.06.18 18:15
For twenty years I have been caring for a wife who has Parkinson's disease. I am now 74, and I have found the judicial use of marijuana to be of immeasurable help for reducing stress and burnout. Marijuana can lift my head above the clouds while still leaving my feet on the ground so I can walk the caregiver's walk. Has anyone else had the same experience?

By mylove On 2016.06.18 21:42
Yes. Just got back from the store ourselves. Try something high in CBD for your wife and something with some THC for your own stress. We personally like hybrids. It really works to help both of us sleep and calm stress and anxiety when nothing else can.

The app Leafly now recognizes Parkinsons as a medical use condition, and has several suggestions of strains that may help. Also for those of us with stress and our own pains.

By tomhuth On 2016.06.19 12:32
For years, dope helped distract my wife Holly from her anxieties and discomforts, and especially from her endless agonies of withdrawing from the Parkinson's drugs. Now, as she nears the end, I sometimes give her a spoonful of oil to bring a smile to her face. I've been an enthusiastic smoker since I was 30. I have a memoir out, Forty Years Stoned, about caring for Holly. Marijuana makes me a better caregiver, I think, by helping me stay refreshed and relaxed.

By cmm On 2016.06.20 13:41
This is interesting because I often wondered if this would help. However, I have allergies and the smoke kills me. My PWP also does not like the smell. I have never heard of the oil as I am not a drug user at all.

By LOHENGR1N On 2016.06.20 16:05
Why was/is She endlessly withdrawing from Parkinson's medication?

By tomhuth On 2016.06.20 16:14
Reply to CMM: There are many edibles such as cookies that you could try.

By tomhuth On 2016.06.20 16:17
Reply to Lohengrin: For five years she took Permax, Eldapryl and Amantadine. They caused paranoia and hallucinations. In order to reduce withdrawal symptoms, she took ten months to slowly wean herself off of them. Nevertheless, she suffered two years of nighttime terror attacks and six years of excrutiating senstions of heat. Neurologists said it was PD. But it wasn't. The symptoms gradually went away. Now, twelve years off the drugs, she is in her last stages, but at least she is serene and unruffled.

By LOHENGR1N On 2016.06.20 20:19
Is She on any anti-parkinson's medication? She might find some relief and even regain things thought lost from some of the medication.

By cmm On 2016.06.20 20:46
Reply to tomhuth: My husband had the same reaction to those meds as well as others. He is med free and had DBS but the drugs can have horrible side effects.

Where do I get cookies.

By tomhuth On 2016.06.20 23:28
To Lohengrin: She hasn't been on meds since '02. They just weren't for her, and now she's right near the end.

By tomhuth On 2016.06.20 23:31
To CMM. Where do you get cookies? Depends where you live. In a state that allows medical marijuana? If so, you'd need a prescription for one of you or the other. (Unless you want to go to a black-market dealer). If you're in a state like Colorado which has retail outlets, you can just go to the store and order edibles.

By mylove On 2016.06.20 23:48
There are lots of smoking alternatives. Edibles like cookies, candies or beverages. Tinctures. Teas. Ben likes a particular brand of hard candy lozenge that helps him sleep the night through.

One caveat - edibles take longer to take effect, and last longer. Get good advice from a dispensary on what strain to try, start with less than you think you need, and go slow until you know how you like it. A reputable place will help walk you through all of these.

By LOHENGR1N On 2016.06.21 00:34
What Neurologist has a patient with Parkinson's Disease not on med's for 14 years? I cannot believe She isn't on or retried Carbidopa / L-Dopa? Over that time it makes no sense.

By tomhuth On 2016.06.21 11:11
Lohengrin, you are too quick to judge a situation you know nothing about.

By SJWR On 2016.06.21 11:18
I would assume the only way you can legally use marijuana is if you live in one of the states in which it is now legal. Correct? We live in Florida so we're out of luck?

By LOHENGR1N On 2016.06.21 11:19
Tom, just going by what information you provide.

By tomhuth On 2016.06.21 11:27
That's right, SJWR. Legally, you are out of luck. But the penalty in Florida for small amounts is only a misdemeanor, and I can't believe they'd prosecute an elderly PD patient or caregiver for a seeking a little relief. You would have to ask around discreetly for someone who sells it. Millions of Americans do it. But I understand that many people wouldn't choose to.

By tomhuth On 2016.06.21 11:32
Lohengrin, if you want more information about our experience with Parkinson's, go to Amazon and buy my new memoir, Forty Years Stoned: A Journalist's Romance. But I still suspect that we'd disagree about the meds.

By flowers12 On 2016.06.21 12:34
Interesting subject. I'm curious how many PWP have used marijuana for a number of years before being diagnosed? My hubby took a few tokes every night after work and on weekends for maybe 30 years or so. Since we don't know what causes PD I've always wondered if it could have been pot. When my hubby asked the neurologist for a prescription for some 4 years ago she said no, that will just get you high and has no medicinal value. I personally don't use it but I do think there is certain value to it's use for some people. It's easily available to him now but now he isn't interested.

By tomhuth On 2016.06.21 13:31
Thanks, Flowers12. Interesting that your neuro said, "It will just get you high." It was precisely the "getting high" that served so well to distract my Holly from her discomforts and anxieties.

By Maddie52 On 2016.06.21 14:01
Hi Everyone,
My husband ( 68 yrs old/22 yrs with PD) does use marijuana. It does calm him and sometimes we see a real benefit for him with movement etc. This disease is so awful that I feel that anything that either actually helps or a PWP thinks helps them is a good thing. He can do so little now that if something brings him a little relief or happiness-- then so be it. We live in Denver, Colorado so we don't have the issue of legality. Perhaps being a child of the 60s/70s makes me support legality for the entire country.
My husband does continue to take his PD meds and all his others too ( Heart stuff, diabetes, etc)
Thanks

By SparkysGal On 2016.06.21 15:29
My hubby PWP - takes meds for PD, heart, diabetes, etc. BUT marijuana is the only thing that truly helps with pain and anxiety. His Neurologist says "do what works". So it is a supplement when he's having a particularly "shaky" day or leg cramps or what ever. It also helps relax him to be able to go to sleep more easily. I don't use it and never have, but I'm not going to judge anyone. It works for him and that's good enough for me. (he's 63 diagnosed at 46)

By LOHENGR1N On 2016.06.21 16:51
Yes Tom we will disagree about the med's, unless you understand the dynamics involved in the disease. The lack of dopamine and other neurotransmitters which have to be replaced to function properly which pot doesn't do for all the feel good pluses. And I'll pass on buying a stoners story and continue to disagree on the medication. To me, myself I'd rather have a caregiver on top of things than with their head above a cloud and their feet on the ground (your words not mine)

By tomhuth On 2016.06.21 19:18
Of course, marijuana can't cure Parkinson's. But it can make it more bearable, for patient and caregiver alike.

By cmm On 2016.06.22 10:44
To LOGHENGRIN: My husband could not take the Parkinson's drugs because he is Bipolar and they cause him to go extremely manic. He also had hallucinations and other side effects. He tried Maripex and that almost killed him-total disaster! I would imagine if you have any type of mental disease (even depression) some of these drugs could have adverse side effects. Fortunately DBS has the shaking under control...for now.

By jcoff012 On 2016.06.22 13:15
This is a tough topic.

When our son was going through chemo and radiation, we had to discuss possibly using pot for his nausea...we left it up to him. He was told by his doctors that it was not legal here in California, so they could not prescribe it.

The same would be for pot and PD here. It is not legal here, so it would be a difficult decision for many. For our family it is not. We err on the side of legality. But, to each his own, we don't judge. No one truly knows how they would/will react until faced with the choice.

By tomhuth On 2016.06.22 14:33
Likewise, no one can predict how a person will react to a drug, whether legal or illegal, until he or she tries it.

jcoff012, I like your open-mindedness, but I'm perplexed. I also live in California, and medicinal marijuana has been a legally prescribed drug here for 20 years. I have a prescription myself.

By jcoff012 On 2016.06.22 15:53
I am open-minded, but I am also aware of the abuses of "medical marijuana". You know very well that it is not difficult to get a card here...that doesn't make it a truly legal drug to me. To me, if it were truly legal, there would be no need for the card!

The pot debate has been going on for years. We were teenagers in the 60's and 70's, so drugs were everywhere, that didn't make them accepted everywhere. Pot users always have, and always will, defend it's use. There is no need for a lengthy debate, as no one ever changes his/her stance. For me, pot is not a drug of choice. But if anyone finds it useful or soothing, I will not condemn them.

By umajane On 2016.06.22 16:05
It's great to live here in California and have a choice. A little marijuana laced brownie could be just what the doctor ordered for the caregiver or the PWP.

By LOHENGR1N On 2016.06.22 19:05
One of the great things about a forum like this is you can register and post, answer, ask questions and share your stories or voice your opinions. However with this comes a responsibility. Most here have PWP Who take many medications. Some cannot keep track of these medications, how many, what time to take them and so on. We all have a hard enough time making sure there are no interactions with prescribed medicine and over the counter medicines. Many times people who post are in the midst of a crises desperate for help and understanding. We do our best to calm and explain what is or could be going on. AND we stick here! Why do we do this? I guess for many reasons probably as varied as the individuals who post. Maybe for comradely and compassion, maybe for feeling useful to others going through this too. A feeling that whatever we are going through we can still help someone else struggling.

However once in awhile some come in with their own agenda. To sell their own book. Or tout a product like marijuana and We don't need lengthy discussions or debates which will end in stalemates. but these agendas come with a danger and that doesn't take that long to arise. This thread for example in a couple of days now has the statement "no one can predict how a person will react to a drug legal or illegal until he or she tries it." Too late then the adverse reaction has already happened (if there is one) and now patient and caregiver have to deal with it. We patients here deal with it the speaker doesn't. Or a statement "it's great to live in California and have a choice. A little marijuana laced brownie could be just what the doctor ordered for the caregiver or the PWP". Unless that brownie relaxed the caregiver enough so they didn't notice "pill time" and now the patient suffers from med's being off schedule and it takes days to get back into sync. And the caregiver is posting in a panic what is wrong and doesn't include what happened because of embarrassment of what did happen. Again there may be a post worried about a change in situations and disease say nothing happened different because the herb is harmless or said to be helpful. There is danger to patients because we rely on our caregivers to help us with our med's. If they have their heads above the clouds and not into the battle we suffer and so do our caregivers.

In answer I suppose one could say they're adults they make their own discussion, it worked for me. One could say that or just stop posting and move on to more fertile fields (forums). Maybe without other medications involved no harm but with all the medications involved, with the timing of them all day, a you can't predict how a person will react to a product until they try it. Speaks volumes of compassion (in my estimation)

By flowers12 On 2016.06.22 19:25
I think this subject has raised quite a difference of opinions and each has the right to his own. I would be hesitant to give someone marijuana if they haven't used it before or in a long time. Who knows what the combination of PD meds and pot could do. Anyone who has a PWP with dementia and bad episodes probably wouldn't want to take a chance of what reaction pot may present. It's another drug to add to the mix and all drugs have side affects.

By tomhuth On 2016.06.22 20:03
LOHENGR1N, you have too many false assumptions and fanciful scenarios about the effects of marijuana to make a credible argument against it. We should stick to topics where we have some expertise.

By Maddie52 On 2016.06.22 20:30
Good Evening,
I am not trying to be unpleasant but
I just want to interject that I think we all respect each others opinions. My husband uses marijuana but takes all his meds, others don't think it is appropriate, some think its better than taking meds, etc. All of us are just trying to help each other and make our PWPs and our lives a little better. Sometimes as with emails posts are misunderstood or taken out of context or misunderstood and then we start reacting defensively. I know I did with a post and the response I got once. There is no reason to judge others beliefs etc. Tom, I understand your position and respect it but Al has /does bring such insight to all of us from the PWPs perspective that you really need to respect that. Glad you are reading/posting on the forum and hope you will get valuable info in your quest to make your precious Holly's life better (as that is all our goal for our loved ones) but perhaps it is time to put this thread to bed at least for now. Tom please continue on the forum just not on this topic.
If I am out of line everyone, please tell me.

By jcoff012 On 2016.06.22 21:57
As I said earlier, I respect everyone's opinions, but I also think we need to take a deep breath and relax. Pot is ALWAYS a touchy subject and always will be. No one ever changes his/her views, not really. So, discuss if we must, but remember this is a forum which is supposed to be a place for caregivers to share ideas and not a place to chastise a reader with whom we disagree!

By Maddie52 On 2016.06.22 22:08
If my last post offended you or was inconsiderate or unkind I truly apologize. Perhaps it is just that my husband is doing so poorly that I didn't feel that continuing that thread was productive. That was selfish on my part. I certainly did not mean to chastise anyone. And as I said sometimes posts, emails etc. are misinterpreted.

By mylove On 2016.06.22 22:51
I don't feel like anyone here came in with any agenda, and I also don't think any one persons opinion is more valid than anyone else's. It's an open forum, the initial question was open and honest, and there's been a lot of discussion all the way around. That's what this place is all about - to share what they find with others in the same boat, and to ask questions. I don't think it's anyone's position to be hall monitor here. We have certainly had other subjects that have gotten contentious in the many years I've been here. But it's everyone's right to walk their own path, no matter if everyone agrees.

There was already a request to agree to disagree voiced. Let's respect that and welcome a new member.

By jcoff012 On 2016.06.23 10:16
Maddie, I don't think anyone was offended, I certainly wasn't! I agree with Michelle---we agree to disagree--she and I have become good friends, but we don't always agree...just like we are with our spouses! Lolol I love and respect her, so her life experiences are part of that. As she said, we agree to disagree, so be it. To anyone on the board, NEVER fear to post. We truly are all in the together. Freedom of expression makes us interesting and just that...free!

By VioletV On 2016.06.23 16:22
Tom,
A couple of housekeeping notes -- if you read through the past many years of posts on this site you'll see that our practice has been to respond in one post to all or any of the prior comments, rather than posting a separate comment to each person.

My own experience is that doing so reduces the sense of 'personalizing' responses, and focuses our comments on the content and ideas rather than on an individual.

We all seem to share the value of giving our best to each other and seeking information, support and encouragement, without polemics. We know each PD journey is an individual one. As Michael Okun MD says -- "If you've seen one person with Parkinson's, you've seen ONE person with Parkinson's." With that said, welcome. This is a loving and supportive community and a lifeline.

By Mary556 On 2016.06.24 12:31
Peace be with you, Tom. I'm sorry for your wife Holly being so ill and nearing the end of her earthly days. I sympathize with you at this difficult time. Most everyone at this forum is grieving in some way as PD continuously inflicts pain into the daily lives of our PWPs. I believe all of us are trying to give the best possible care to those we love. Personally, I would not have given one more mind-altering drug to my PWP who had dementia.

Someone I know had a bad experience wth marijuana, not medicinal but recreational. At college parties when friends would partake, they advised her: "this is not for you" so she trusted them and refrained. At some point she wanted to experience for herself the peacefulness that others seemed to get when they passed a joint around. The first time she smoked pot she did not get high. The second time something awful happened in her brain, a hellish experience that I could not begin to describe to you. It was a few days before she recovered the use of her thinking. I'm sure this is not the same for everyone, otherwise no one would ever want to go near marijuana. So, how do you know if your loved one is someone who would have a bad result? Unless they try it, as you say.

My own experience is limited. When I was in high school a 17-year-old boy who lived on our street was killed in a car crash. It was devastating for his family and friends. I did not know him personally but a friend who sometimes spoke with him at parties told me that he was always stoned. I made my own choice not to use marijuana. Other friends made a different decision. I do not judge them.

If I were a PWP and hired a caregiver to look after me, if that person got stoned when they were not on their own time, I would be upset. I would be concerned about their ability to make quick judgements and to keep me safe from falling.

I hesitated to open this up again, but wanted to give another side of the coin.
Prayers for all PWPs and caregivers.

By jcoff012 On 2016.06.24 22:13
Just got this in email, seems it needs to be shared...have a good weekend!

Why did the cows return to the marijuana field?

It was the pot calling the cattle back!

By tomhuth On 2016.06.25 14:32
I appreciate that what works for me might not work for some other people. I just thought it would be interesting to bring the subject of marijuana out of the closet. I'm glad it has stirred up a vigorous conversation.

By dans316 On 2016.06.26 19:02
I bought the book, seems to me to be more about a love affair with Marijuana than anything else. Amazon had some reviews about the book, the latest being dated 6/23 and the writer seemed to indicate that Holly had died????

By tomhuth On 2016.06.26 20:22
No, Holly is alive still. I see what you mean by that review, how it talks about a "bitter end." No, not yet. And when it does come it won't be bitter. Everyone has a right to die before the pain and misery set in.

By jcoff012 On 2016.06.27 17:32
Tom, you have a right to your opinion and to express your feelings, but try to be sensitive,as you are not aware of the back stories of others here. Some posters have lost spouses, some recently, and in their defense, "the end" may not have been "bitter" in their opinion. It may have been the end which. although accepted, came all too soon. We all do our best in our individual circumstances and we all need to respect the choices each makes. Part of that needs to be to not push an agenda.

By Mary556 On 2016.06.27 20:53
Tom, I'm sorry for your tragic loss of your brother as well. I went to Amazon to see the review Dan spoke about and also read your profile while I was there. Since you are a new person here, we are not familiar with your background either. the particular Amazon reviewer of your book used the words "until the bitter end" to say that you would always be with your wife until then, but those words were not your own expression from what I can tell. You speak of your Holly's death "before pain and misery set in". I just wanted to say that when my loved one's time came, there was actually a lifting of the suffering. Her time in hospice was peaceful and comfortable for my mother and for our family. The last words that my Mom spoke to me were happy and kind.

By mylove On 2016.06.28 09:54
With all due respect to everyone - I think folks are reading too much into too few words. Expressing your own truth is not pushing an agenda. We are all here for that safe space where we tell each other it's ok to discuss the hard stuff. There will always be those who disagree with us, but if we censor everything we say, then nobody advances the discussion any further. We can't avoid the tough topics. This is a tough disease!

End of life is that topic nobody feels comfortable with, and in the end we all have the right to choose how we meet it. We can decide that it's just too scary to discuss, but folks....it is THE biggest elephant in this room. (And maybe a better topic to start in another thread, though I didn't get the sense anyone was bringing it up to discuss it further).

I'm always a little dismayed when the board starts self-censoring. It's happened over the years periodically and causes everyone a lot of heartache... When the "doing great on medication X" folks disagree with the "medication X ruined my life" folks; exercise vs no exercise; when someone passes along a new treatment or research and is told to just quit looking for hope; or more heartbreakingly - when someone at their breaking point comes here to find sympathy and some semblance of sanity and is told they should just quit complaining and be more cheerful. We can't do that and still be a therapeutic place to find hope and help and friendship in the trenches.

Can we focus our anger on the enemy - the one that unites us into a club that we never signed up for? Because as for me - I'm all about getting through this rocky road as easily as we can, using whatever tools are in that toolbox. I'm always grateful to hear when someone's found another one, even if we try it and it doesn't work for us. Please don't stem the open and honest flow of information...we have to have it. (As a side note - there are folks here who live hours from their neuro, or have ineffective doctors who don't keep up. For those folks, you never know if this board is a major source of value for them in finding out about things they can take back to their doc and discuss.)

By jcoff012 On 2016.06.28 10:23
Michelle, glad you added your thoughts. As I said before, we agree to disagree! That said, to me a lot of decisions come down to my belief system from growing up. That includes my feelings on pot use and end of life. I respect your heart felt feelings and your struggles, so it would be wrong of me to impose mine on you or anyone!

It is true that a great many feel both concepts are valid, but just as those who feel that way are defensive, so are those of us who do not hold those opinions.

Name calling gets no one anywhere, neither does proposing one course over another. I totally agree that as long as we are here we all need to respect the differences of opinion, but realistically know that most of us have a belief system already in place that will rarely change.

Again, you are totally correct, we all are fighting against Parkinson's...that is a hard enough battle...we need all the friends we can muster along this journey! Believe what we will, but encouraging discussion does not mean one oerson's opinion is more novel or more important than another's.

We can spend a great deal of time with breaking down barriers, but we all should use our precious time against PD... Not each other!

By mylove On 2016.06.28 11:07
Hugs. I value all of my friends here on this board very much. I think I'm just the Rodney King of this board: "Can't we all just get along???" :)


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