Dear friends thanks for your reply: Yes, i have tried everything, i plead to whomsoever I can to make her understand. Been to church too and you know they do not support MAID, so yeah. We do not see the doctors because they have recommended 2 pills every 3 hours plus other meds but she will not allow me fearing the bad side effects. So, what I am doing is trying to set her up for life after me. Our families have deserted us, because she married me in this condition and they cut their ties with her and I do not have much of a family. This stress was killing me and i had no outlet. So, as a last resort, I posted here. She only believes in alternative therapies anything but no PD meds. My anxiety is so bad but she wont allow Ativan or clonazepam for fear of addiction. I love her a lot and she does more so but she is not able to see the real picture. Your comments
DOS cont.: Dear friends thanks for your... - Cure Parkinson's
DOS cont.
i wish I had an answer. There are a lot of holistic remedies that can help support brain health, etc. try researching? Sorry you are dealing with this.
I want to be sure I understand. Your/her neurologist prescribed Ativan or clonazepam for her Parkinson's?
I believe he is the one with Parkinson's
Thanks
For us to make suggestions as to what might help you, it would be helpful to know what symptoms you are experiencing. Be that as it may, many people in responding to your prior post recommended high dose thiamine/ vitamin B1. Since your wife is agreeable to alternative therapies this should be okay with her. Dosing instructions and other information at the links. Allow four months for full effect:
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
facebook.com/groups/parkins...
A good source of thiamine HCl is here:
vitacost.com/vitacost-vitam...
Another alternative therapy has helped me and others:
• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...
By not allowing you to use standard medications, she may very well be denying you any semblance of normalcy. I am sorry to say this, but she is torturing you with her fear of side effects. You may have a chance at some reasonable level of functionality with proper care and treatment. At the very least, palliative care should be provided. I don’t say this lightly as I am struggling hugely with symptoms and side effects after 14 years with PD. You both need psychiatric help IMO.
Amen, to your reply. This is serious business.This gentleman and I have had PD for about the same amount of time and I am on my feet taking care of myself and walking everyday. I find it interesting when people are so afraid of side effects that they live with misery when they don't need to. I find off times are much worse than any side effects. To think of somebody living in off time all the time, well, that just sounds painful on every level.
We can't change other people but we can take better care of ourselves.
Since your wife wants you to use only alternative care, besides the meds you are using already, you could get the Thiamine book that explains Dr Costantini's methods using vitamin B1 along with those meds.
I agree with park_bear's suggestions.
To consider MAIDs would be very upsetting to her. You can't undo it. You don't really know what would happen to you in the process either.
I hope that your wife cares the way you say she does. If she is concerned over side-effects, reading the Thiamine book will take care of that. And there are many testimonials that she would like in the book.
Hi Gurdeep, I'm very sad to read about your situation on all the posts you have made.
I am rather stunned by what you are going through. I have always been there to support my husband and his wishes with the PD. We discuss things that we don't agree on to a conclusion that is satisfactory to both.
My husband was diagnosed at 38 yrs. He is 61 yrs now, we both are. In pretty good shape overall, still goes to the gym, cycles, still walks unaided (although falls are an issue, his worse issue at present, but he wears knee pads). It's apparently because of how long he has had the PD around 25 years since DX. He had symptoms probably 8 to 10 years earlier in Dystonia in foot. He has no tremor barely, ever.
He started at age 38 on Amantandine, then stopped that 2 years later. Added Requip for movement and restless legs, Artane for rigidity and Effexor for depression - low doses.
In 2006 due to the meds not really keeping him "On" enough, decided it was time to try the gold standard - Sinemet 100/25. All the other meds were dropped except Requip. It was fantastic for him right up until 2012, with slow increases in the Sinemet. Things were pretty much under control but he was starting to get more Dyskinesias and wearing off quicker. So Requip was stopped as new Neuro wasn't happy with the effect it had on cognition and also it was causing a little obsessive behaviour, heavy fatigue sleep attacks. (So that was a Side effect we did not need). Also at this time we had decided along with his Neuro that it was time for Deep Brain Stimulation so end of 2012 he had the DBS surgery - both sides into the GPI. The benefits far outweighed just adding more meds. He has never regretted the surgery and to this day is so appreciative of getting his life back. Side effect - yes his walking is worse, DBS doesn't help with gait, probably the opposite.
For him now, after all these years. He is still on Sinemet 1 x 100/25 - 4 x daily. From 2015 also Sinemet CR (extended release) 200/50 - 2 pills - 4 x daily, 1 x Comtan to help extend the Sinemet. Digestion Senna tea.
Gurdeep, this is your life, surely it is up to you what you put into your body. The side effects can be challenging, but also, each person is very different. Some people have no side effects to meds. It's all down to balance and working on a plan with your Neurologist. You have so much life ahead of you at 37 years old...... I'm gob smacked that your wife cannot support you in what your wishes are so that you can live with the PD in less discomfort. You are putting up with enough stress already in your life and some !! Life is about living, the Church surely agrees and things could be so much easier it seems. I'm not sure what else to say.
As I have said above, this is my husbands journey and this is working well for him, with obviously some progression issues in the mix. But his life has been extended into a very good situation with modern medicines and the DBS. Wishing you all the best, please feel free to message me. JB
Sorry realise you are now 45 years old..... I hadn't seen that until now. SO you were the same age as my husband basically when Dx.
Don't forget Mucuna Pruriens Powder. That is herbal and has been used in Ayurvedic medicine for centuries. There are a lot of different types of mushrooms being used for anxiety now also.
Jeaniebeanie, have you had much experience with the Mucuna. Our Neuro is adamant it's a waste of precious time and energy trying to get the dosage right for any effect at all. She is very supportive of anything we want to try, but this she was not.
I took Mucuna, it delayed my need for med by 2-3 years. Dosing is a lot like the medications, there is a lot of trial and error.
Thanks House2. So you weren't and aren't taking in conjunction with meds now? Because it was of no benefit or the meds just do a better job?
I have a pretty complex medical history including a blood clotting disorder. So
I had to stop taking a number of things I felt were beneficial
Been using it for years and it does work. Half teaspoon mixed with a little juice. I buy from Natures Root in Uk. We prefer the powder.
Oh that's interesting. It certainly seems from the many people I have read that do use Mucuna that it takes a time to figure out the dosing. Powder seems to be the best extract. Do you mind me asking, what do you think has become better for your husband since he started taking the Mucuna? Less Sinemet, and so less dyskinesias? Very interested as it's definitely something I would like to see my husband give a try with.
I give him it to bring him on sooner. He has had PD 29 years but it definitely seems to help. I have read it last 4 hours in the system
Mushrooms? As in magic mushrooms 😁..... That's a new one, have not read about that before. Do you keep records or excel sheets of symptoms, meds etc like I do .... Just interested really as I do a lot of work on Excel looking at placebo affect with changes we do or don't do versus meds changes and what we see get better or worse... in conjunction at times with the Neuro... especially with the DBS programming that we can change ourselves to a point.
Actually I realise we are hijacking Gurdeep11's thread. So I am going to send this on a separate posting ... Sorry Gurdeep
this may sound harsh but your wife’s behavior seems very controlling. It borders on emotional abuse. There is no reason for you to be in this state with so many options out there. You are in control of your body and what you put in it! C/L allows me to function almost completely normal when I take the correct dose. You seem to be way under medicated. The benefits completely outweigh the side effects. The only side effect I have is a little bit of a queasy stomach after my first dose of the day before I have breakfast.
There is also B1 therapy available, DBS, FUS, etc. no need to suffer like you are. And the stronger you get the more you can exercise. I am definitely stronger now than before I was diagnosed
I had to look up what MAID means, I am not sure what you are asking. PD is a progressive disease that is managed either by MEDs or alternate treatment. Many people chose MEDs and are reasonably stable for years. I don't understand why your wife makes all decisions for your health, did she get medical waiver? I understand the hesitation in trusting Pharma, but this is extreme. Have you ever trialed any medication? Imagine forbiding a diabetic meds bc you don't like side effects or refusing blood pressure meds etc. I am sorry this is very strange, I really do not understand.
Is there a local agency you can call where a social worker could intervene?
I found this:
canadianhealthadvocatesinc....
I agree that her behavior, while well intentioned, is abusive. You may have agreed with the mostly “natural” route until reality raised its ugly head and told you it wasn’t working. You have other options. She has chosen to be your caretaker, that is her decision, but you need to make your own medical decisions as long as you are mentally capable, which you seem to be.
YOU need to make your care decisions. Call your neurologist, your General Practitioner a therapist, someone -a leader- from your religious community if you have one, or any friend who understands your side of this situation. Ask for help. Consider this an emergency.
If you are considering MAID at your age and with options still on the table for relief, you are probably depressed. Your beloved wife DOES NOT have the right to control you in this way. Someone from outside needs to come in and talk with her, and defend your rights as a patient.
Have you told your wife seriously that you don’t agree with her and will be making your own decisions?
It sounds like YOU are the only one who can get you out of this situation. It may take more strength and willpower than you think you have, but YOU CAN DO IT.
I found this: canadianhealthadvocatesinc....
Can you call them and ask for help?
If your wife loves you, she will eventually come around, but she needs someone from outside to talk to her. Her behavior is irrational, but underneath it may be fear of losing you that is driving her. She needs counseling, so do you.
My heart goes out to the both of you, and wish you to find a better way.
you are right we need someone from outside and I do not have that... what you think why i am here posting about my misery.. she does not understand and i agree with her to some extent but what option do I have. She says i THREATEN her of starting on meds....i make her read the replies too hoping better sense will prevail
where do you live in Canada?
chilliwack BC
Have you looked at this guy’s story?
fightingparkinsonsdrugfree....
He no longer has Parkinson’s. I am trying his recipe for recovery.
Good luck,
Gerald
Your wife may not be aware that l-dopa is a natural substance and, by taking it, you would be addressing a deficiency. Perhaps she can be convinced.
I got this slant on l-dopa from a recent interview with Dr. Laurie Mischley on YouTube: youtube.com/watch?v=Q0EUGrB... . She addresses this at 35:01 on the video. Here's what she says: The standard drug-based therapy "is based on supplementing an amino acid called l-dopa .... so [the pharmaceutical treatment addresses] a nutritional deficiency disorder....[People with Parkinson's] for some reason can't produce enough dopamine .... and you have to augment l-dopa from the outside world, and, as long as you supplement this amino acid, the machinery runs quite well. In over the last 30 to 50 years we've gotten really good at packaging and delivering this amino acid supplement in a lot of fancy versions, but, even though they come with a high price tag and you fill them at the pharmacy and your physician prescribes them, we're kind of deluding ourselves to think that all of this is anything than a nutritional supplement. We are just giving you l-dopa so things can work as normal. So I would argue that the only success that Parkinson's has ever had has been realizing that, when you supplement things that the body needs, that you're not making enough of, you do way way way better. "
L-dopa is a natural substance. Carbidopa-levodopa essentially is a supplement. The formulations prescribed by doctors just enable the amino acid that you're deficient in to go where it needs to go and do its job.
She must realize that you are the patient not her Even though it is a collaboration Are you doing any P D exercises?That has helped me a lot
I am trying everything in my capacity.. I tried B1 pill 100 mg, read the book too. I even emailed Dr. C in 2016.. but it does not seem to be doing much .. my condition is such i cannot experiment too much..
Gurdeep,
I think it is completely pointless following any alternatives right now because none have been proven to work and you are hyper anxious at the moment so they are very likely to be drowned in your stress levels.
But people have given you the answers here. You can continue to ask questions or find reasons it will not work for you but from what you have written you are living with an abusive, controlling woman. Sorry to be blunt but if a man was doing this to a woman we would call it domestic abuse or coercive control and get a refuge involved. Your Parkinsons poorly controlled complicates matters. You need help from an outside agency. You live in a country where there is that help. You need to work out who to approach who will help you get out of this situation. Rebtar has given good suggestions. Even just following up on MAID will alert people that you need help.
Hi gurdeep, how are you doing. Have you managed to improve anything on the symptom side or your situation. You are in many peoples thoughts I'm sure. Let us know how you are.
Thank you Bunny for your thoughts and making me realize there are people who just do care for others. I am trying my best to hang on as long as I can.. God bless you and everyone
🐱😇 You can do it !!
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