New to HealthUnlocked.

[Spencer53]

Hello, I'm new to HealthUnlocked. My main interest is news and treatments regarding Parkinson's. My husband into his sixth year and doing reasonably well at this time. Always interested in natural options and exercise choices.

Thanks,

Spencer53

[Hidden]

This is a medical research YouTube channel on neurodegenerative diseases (e.g. Parkinson's, Dystonia, Essential Tremor, etc). The videos uploaded of patients treated with the novel high-dose thiamine therapy in addition to their classic, standard therapy.

youtube.com/channel/UCwsHIc...

[Zella23]

Welcome to this community. Lots of really useful and helpful info on the site and lots of helpful and knowledgeable people.

[Spencer53 in reply to Zella23]

Thank you - looking forward to gaining more knowledge.

[JohnPepper]

My name is John Pepper. My Pd symptoms started in 1963. I was only diagnosed with Pd in 1992 and put onto Pd medication. By 2002, because of all the actions, taken subsequent to my diagnosis, I was able to come off my Pd medication and have lived a normal life since then. I am now 86 years old and have helped a lot of people deal with many of their Pd movement symptoms.

You can contact me at [e-mail] and I will send you my videos and lots of information as to how I went about doing this, I do not charge anything for this service.

[Spencer53 in reply to JohnPepper]

Thank you JohnPepper - I look forward to hearing from you about your Parkinson journey. I'll be in touch soon.

[JohnPepper in reply to Spencer53]

Will you be emailing me?

[Spencer53 in reply to JohnPepper]

Hi there - I'm taking in a lot of information at this point in time - I'll check out the books on amazon. Thanks, Spencer53

[wifeofparky]

Welcome. As a spouse of someone who had PD, I recommend you learn all you can about PD. Read, attend educational seminars. Go to Parkinson.org where you can request free booklets of valuable information. Knowledge is Power.

Since your husband is doing well, help him to maintain his level of wellness or improve it. Be his advocate. If he is reluctant to ask his Movement Disorder Specialist questions or mention new symptoms, ask for him. Keep a notebook with all his doctor visits. Record the results of tests and don't assume all his doctors 'talk' to each other. They send reports but they can get buried in his charts. Keep them informed. We cannot remember everything so the notebook will become his health bible.

Remember that PD is not the cause of all his symptoms. The human body is complex and he may develop other health issues as he ages. My husband saw his MDS, a cardiologist, our Primary, a urologist, needed gall bladder surgery at one point...

Join a Caregiver Support Group. Most are virtual right now but search for one so you can attend when able.

I wish you both the best.

[Spencer53 in reply to wifeofparky]

Thank you wifeofparky - a lot of what you write describes us. We dove head first into learning all that we could. I pushed for cat scan, speech, occupational and physio - I took my husband to our GP two years in advance of a diagnosis because I knew something was wrong - not fun when the doctor thinks I'm paranoid. I finally pushed back and so on we went to numerous webinars, Davis Phinney events, Parkinson Canada events and more. I created a personal protocol for my husband after reading numerous books - one in particular was by Dr. Dale Bredesen (The End of Alzheimer's) - my husband had MCI - I put together a list of supplements that are supporting him. Five years after the diagnosis, we consented to trying the Levodopa/Carbidopa - less than two weeks into taking the pills, my husband was falling, feeling confused and had a sense of being drunk - we were in touch with our Movement Disorder Specialist - after a six week period - we chose to stop the medication. My husband is a compliant person with parkinson's and so our journey at this point is for him to continue his various exercises, daily walk, keeping mind alert and doing his personal protocol. His progression is slow and so we continue. The doctors are supportive and that really helps. I will certainly do the notebook Bible to gather information from our visits. Please stay in touch. Sincerely...Spencer53

[Sapeye2020 in reply to Spencer53]

It would be a great gift to all members if you posted your protocol for others to compare and discuss.

Those little Ah Ha's when you put 2 and 2 together.

latest was yesterday when I got to adding up the mgs of Mg that I was taking and realized that may be why I have had less constipation days lately vs "my norm".

Good to see another Canuck on the HU discussions.

[Spencer53 in reply to Sapeye2020]

Hi Sapeye2020 - I will gather the information of my husband's Personal Protocol - in doing this I want to emphasize that it is his protocol alone that is working for him. Calm Magnesium is an excellent product that can alleviate constipation. I will put things together in a day or so. Meanwhile - take care.

[Sapeye2020 in reply to Spencer53]

Mg , Neuro recommended 600 mg daily of Mg Bis-glysonate , has better absorption for cramps, minimal to slight reduction of cramping. For Constipation Mg Citrate, with the added 'benefit' of you getting an upset gut, and multiple BMs a day. I also take aNew Roots Herbal C Vit C called C/8 having 8 different forms of C in it including Mg.

From some reading a while back on 'Cleanses' It sounds like they formulated for use as a "Vit C - CLEANSE" product where you keep on taking pills until you become ''loose".

[OptimusPrime]

Extended release C/L was the game changer in our experience...some PWP can't tolerate the regular C/L for whatever reason.

[Spencer53 in reply to OptimusPrime]

My husband tried C/L late 2020 - after six weeks, he was far worse than not being on the medication. He's off now and he faring well.

[park_bear]

Qigong has been very helpful for me. It takes dedication and is not for everybody:

healthunlocked.com/parkinso...

[Spencer53 in reply to park_bear]

Hi park_bear, I'm interested in looking into Qigong. I am seeing a Chinese doctor for acupuncture. He has helped correct areas of pain so I'm looking to add another layer of natural health that can improve things more. Thank you

[park_bear in reply to Spencer53]

At the link above you will find a good beginning practice from my teacher Mingtong. In addition here are some meditations guided by Mingtong:

healthunlocked.com/parkinso...

[JeanieBeanie]

I give my husband half a teaspoon (25ml) Pure Selva 100% percent Mucuna Pruriens in a pill bottle with a little cola and a Sinemet 10/100 dissolved in it. Shake the bottle and give him it with half Sinemet slow release 25/100. We are in Uk so not sure what other versions are. This works well for him and he has had PD for 26 years. I buy the Pure Selva on Ebay uk. You will need to experiment on dosage. It is very reasonably priced and lasts a good while. Works better than the Mucuna capsules which we have tried.

[Erniediaz1018]

Welcome, glad he’s doing well.