Hello, All! It's been a while since I've visited on here on behalf of my father, Billy Joe. He is so wonderful and special to me! How can I be a comfort and help to him and my mother for the next 4 more days while he is off all his PD meds to prepare for an upcoming shot in his back for pain? He has had PD for about 14 years, feels pretty bad most of the time, but has a fantastic attitude. I am heading to their house in a little while (they live closeby) and I just wish I could do something to help them get through these tough days.
Had To Come Off All Meds and Supplements ... - Cure Parkinson's
Had To Come Off All Meds and Supplements 5 Days
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rsacdoolittle
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40 Replies
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A dozen donuts and a 12 pack of beer for Dad and maybe a box of chocolates and some Earl Grey Tea for Mom. Yep that should do it
Haha GymBag, good thinking! He won't drink, but I'll bet a PB milkshake would brighten his outlook! Take a look at my overall response below...
Why does he have to be off his meds for 5 days? My mom has had numerous shots in her back and hip for pain over the years and never had to stop her PD meds.
OOOOO good question
I missed that
how do they put a needle in you when your bouncing on the table
Thanks for responding GymBag! See my response below...
Yes, I was thinking the same thing, as my husband has had numerous injections in his back for pain and didn't ever have to stop his medication beforehand (only prior to the 3 ops he had for both knee joint replacements plus a discectomy on his back)
Take a look at my later response. Thank you for yours, Glenandgerry!
Juliegrace, thanks for your concern. For some reason, it wouldn't let me put my response directly below your comment. Please see my overall response below....
Just being there will help. Do any housework needed, cooking, dishes, errands. He'll more than likely be slow, tired, not want to do much, and a little grouchy, but don't take it personal. I was off my meds for 24 hrs one time for a trial and it was not a fun day. Good luck to you and your family.
Good ideas Laglag, thanks! I responded to the overall thread below...
That sounds very difficult to manage, are the MD s helping you through this? I thought coming off meds very quickly wasn’t very good for a person with PD.
Coincidentally my husband had 8 shots in his back this Thursday, under sedation in hospital and the doctors made sure he took his PD meds as usual. He was a bit wobbly on fetching him but that was due to the anaesthesia. He’s fine now.
Hope you manage all this ok and the best of luck.
Zella23, thanks for your concern. I did an overall response below...
I don’t understand this at all. My husband stopped his medication suddenly on instruction by his Neurologist (big mistake) and went into withdrawal with serious consequences after a couple of days. He’s never been back to where he was since then. I would query this.
Thank you for your response Abinat58. I totally agree and responded to the overall thread below...
Agree that any time a doc or nurse tells you to stop your meds, or even to miss a dose, question it strongly. They should work with you on the timing of the procedure rather than expecting your med needs to adjust to their schedule. In fact, our meds are helpful to the med staff working with us. I pity the nurse who tried to set up an IV during an off period. She needed two additional people to hold my arm still. Very stressful for all of us. The higher the stress level the more symptomatic I became. Nightmare.
Thanks for responding Jana86. That indeed sounds extremely stressful. Please see my response below...
Jana86 thank you for sharing that because it's so true I recently had 3 hip replacement surgeries between Feb. 6, 2023- June 5, 2023 and it got to where I was so stressed out. My PD symptoms got so out of control and it's taking a lot to get somewhat back to normal if that's what you call it......mm
Don't assume anything where doctors are concerned! Research and ask question question question! This is a terrible idea. There is a long, oh heck I can't think of what it's called, let's say affect from the meds so even though we may feel horrible in off times we would feel much much worse if we didn't have any meds in our system. Don't assume doctors know what they're doing!!
Enidah, thanks for your concern! I have a rather long response to my post that begins "Ok...so my husband misunderstood..."
Ok....so my husband misunderstood and my father ONLY CAME OFF OF ZANDOPA, MUCUNA PRURIENS CAPSULE, vitamins, Tylenol and Advil. Whew! You see, Roger my husband went over to Mom and Dad's yesterday to take him his favorite ice cream (PB chocolate 
and have a bowl with him, and Dad was shaking worse than normal and told Roger he felt really bad today, because "the doctor took him off his medicine". My husband assumed he meant ALL of them. And that is what Roger told me. WE MISUNDERSTOOD! THANKFULLY. The shot he is getting Tuesday is an "Epidural Steroid Injection" and he will be there a few hours. I'm taking them for the procedure. His back pain is worse than his PD actually but is too bad for surgury. His imaging photos show the back of a paratrouper, in the back specialist's terms. Only 2 of his vertebra look okay. The rest are shot. All broken up. We do not know why. He has always been so healthy and strong and the hardest worker. It may be due to the work he did with his first job in a mine or from him and his brothers rock/cave jumping growing up. Could be some osteoporosis. I don't know. I wish there was something for his severe pain, especially since the PD shaking and stiffness make it so much worse even. The back specialist doesn't hold a lot of promise for the injections since the back is so bad, but praying he will be one of those it really helps. If marihuana were legal for medical purposes in TN, we'd probably try that, but alas... Sorry to rant on everyone and for the misunderstanding, but THANK YOU ALL FOR RESPONDING, IT MEANS SO MUCH TO ME AND TO MY FAMILY TO HAVE AN ONLINE SUPPORT GROUP.
No problems that’s what we re here for.
"only came off of zandopa, mucuna pruriens capsule..."
Still not okay. This is a source of levodopa which is an essential Parkinson's medication.
Park Bear, I totally agree. Dad found out just how HELPFUL MUCUNA AND ZANDOPA ARE!
• in reply torsacdoolittle
I had screaming pain. After epidural injection, pain free for over three years.
rsacdoolittle• in reply to
Roy Prop, HOW ENCOURAGING! His back doctor said it helps some and not others. Praying Daddy will be one it helps like yours! Thanks!
My husbands back was equally in a bad state, told it was degeneration of the spine. He was nervous of the procedure but 3 days down the line feels a lot of improvement. He always said his back pain more painful and difficult to manage than PD. Fingers crossed your father feels similar after his treatment.
Same here for my husband - says his pain is worse than his Parkinson's.Glad to hear your husband is feeling a lot of improvement. Unfortunately that has not been the case for Glen after several epidural steroid injections and a discectomy op........the pain has just moved!
Such a difficult one isn’t it? John usually just puts up with the pain and it sometimes gets worse. Heat and Neurofen gel relieves it then it goes back to discomfort instead of being intense pain. Tried lots of things but he just seems to put up with it! Hates painkillers says he takes enough pills!
Zella23, sounds encouraging that your husband has improved these 3 days after the injection! I'm so happy for him and pray it continues to improve.
Thanks me too! Fingers crossed it seems a little easier and he managed to walk over 3 miles today without discomfort, which surprised him! He says his back seems different, so I ll go with that! Review in 6 weeks time. Let’s hope your father gets relief too.
I don’t know if it would help him, but it might be worth trying acupuncture for his pain.
There is also a supplement that could help: PEA (palmitoylethanolamide) that can help with chronic back pain.
ncbi.nlm.nih.gov/pmc/articl...
I have back pain and PD, although both are quite mild at this point, not like your dad’s. There are a couple of other supplements that can help with pain by lowering inflammation primarily: Meriva curcumin (make sure it’s Meriva, which is not a brant but a particular formulation). The other supplement is BoswelliaAKBA (a more potent formulation than regular Boswellia).
For PEA, (Palmitoylethanolamide), the brand I’ve found to be best in the US is Vitalitus.
I am definitely not an expert, but these were recommended to me by health practitioners I trust.
If you decide to try them, make sure you research online first for potential interactions with meds, side effects, etc., and check with his Doctor first.
Good luck! I hope your dad finds some relief.
Rebtar, that is very informative on back pain. I will study! Thanks much.
Good news! Well, not completely. I am really sorry to hear about his back. I also had a very active youth and young adult years and it’s amazing how we pay for it later. Old injuries come back to sing their sad tunes when we’re older. When we also have PD...it sucks! Hope and pray the shots help!
Enidah, yes praying it works to alleviate some back pain!
rsacdoolittle,
There is something that your father can consider that most doctors never mention to their patients with intractable pain. While you're there visiting, call a compounding pharmacy in the same state and explain your fathers situation and ask them if they can compound a topical ointment, gel or cream that your mom can apply to his spine to help relieve the pain and muscle tension that is inherent with a situation like his. Once the compounding pharmacy gives their recommendation, your mom can contact his doctor and explain what the compounding pharmacy is recommending and then ask the doctor if he will write a script for what the compounding pharmacy is recommending.
I wrote about this previously on this forum because it was something I recommended to a long time friend that worked better than what her doctor or physical therapist had suggested for her spinal pain. Here is a link to that post.
healthunlocked.com/cure-par...
This seems to be something that compounding pharmacies excel at. It doesn't matter where in the state the compounding pharmacy is located because they will simply ship the topical compound to your parent's front door!
Regular pharmacies do not offer compounding of special formulations like this. The advantage of topical application over taking the same meds orally is that it does not affect the whole system the way oral use does and the topical application can actually reach higher local tissue levels of the pain relieving substances than oral use can. This often avoids many of the side effects associated with oral use of potent pain relievers. The compounding pharmacy can explain in more detail, but this should give you a basic understanding of the process. Good luck to you and your parents!
Art
Chartist, very informative and I love this concept. Our pharmacy compounds and I will talk to them about this, read the link you sent and discuss with parents. THANK YOU!
My condition is similar to your fathers condition. The pain from , my back deterioration and arthritis in knees are both a bigger problem than the PD. Pain medication was starting to hurt my stomach and it was not really dealing with the pain. I need one more cat scan and then they are looking at injections.
I have been using cannabis CBD suave and oil drops by mouth for about 6 months with good results and have replaced most of the pain medications. But I have been amazed at the result of also taking cannabis THC oil . I have only been taking it for a week and I have been as close to pain free as I ever will be and I am also in better mood . My daughter suggested it and got some for me ( Better than donuts )
You can arrange an appointment with a Canadian company for your father to be interviewed by a medical team all over the internet , who will write prescriptions for you that can filled in a pharmacy in your home town legally by stock already in the store . Go on the internet and search Canadian cannabis prescriptions.
GymBag, this seems about the best news I've heard in a long time for him. I'm very curious about these 2 types of cannabis oil, but honestly am unfamiliar with CBD oils in general. We have dabbled a bit in what I THINK to have been a pretty good brand, since it's a brand often used at our Autism Center where our daughter is assistant director. I think we likely didn't know how to use it properly with Dad, though and I cannot even tell you exactly what he did with it. I think Mom rubbed it onto his feet for a flare up of Gout/Neuropathy pain in his feet and I believe his back. It's been a while and I don't know if they even still have it or used the bottle or what. So your post is VERY INTRIGUING to me. Would sure like to help them in this area of severe pain. Thanks much. I will do as you said and contact the Canadian prescription center I research if my parents want. Pretty sure they are open to any help at all at this point!
Glad to see you got a response from Gymbag and Park Bear, possibly the wisest and most savvy of any one here. Don't assume anything. You never go off your meds cold turkey. When your Dad started his Parkinson's meds, his dosage was deliberately started low and was increased gradually. These meds ALL have side effects. Enough said. Run it to ground. By that I mean check with your Neuro, hopefully he is a movement disorder specialist. CBD oil is a wise choice. Is medical marijuana available? Also if he gets admitted to any hospital make sure he gets his meds on his schedule!
Isthistheone, thanks for responding. I am thrilled with all the responses and support on here. He is going to add Ashwagandha to his Mucuna after the procedure tomorrow, since he has never tried it and I've told him so much I've read about it on here and elsewhere online. Thought that would help encourage him to just get through this time without the Mucuna Pruriens Capsule and Zandopa for the injection and then next time he gets the pain injection, if he does, we will ask his Neurologist and Neuro Spine doctors if he can stay on the Mucuna and Zandopa (and Ashwagandha perhaps) prior to procedure. Also, I am going to look at the Canadian Prescription Medicinal Marijuana that can be made into a prescription at his pharmacy. I DID NOT KNOW THIS IS POSSIBLE IN A NON-LEGAL STATE, so am excited. It's hard seeing him like this and we now know just how beneficial the Zandopa and Mucuna capsule really are to his overall health. Pain worse with it, shaking, overall state of well-being too.
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