Archive for the ‘parkinsons’ Category

Using supplements to treat young onset Parkinson’s from LRRK2 mutation

Saturday, February 18th, 2017

As some of you know who frequent my blog, I was recently diagnosed with young onset Parkinson’s. I also recently learned that I have a genetic mutation called LRRK2 which is responsible for my disease. Over the past few months I have been working with an amazing naturopathic team (Thank you Dr.Samantha Evans!) and doing my own research and I am actually getting better and feel like my brain is starting to heal! I want to share what I have been doing and also find a way to connect with anything else that is helping other folks, especially with LRRK2. I’ll get back to the animals soon!

My natural parkinson’s protocol for YOPD 8 (LRRK2 mutation) – click on the names for Amazon links

  • Sinemet 100/25 1 twice a day. This is the standard drug for Parkinson’s disease. I’m on a very low dose! I know my Sinemet helps my symptoms but it is really everything below that is healing me and keeping me on this low dose.
  • Niacin 500mg 2 capsules three a day . Niacin completely got rid of the severe anxiety component of my disease and decreased my fatigue symptoms significantly. Niacin helps with blood flow to your brain and helps preserve mitochondrial function. It converts to NAD (Nicotinamide adenine dinucleotide) which is showing promise for neurodegerative diseases.You need to take real niacin, not flush free and you will go through flushes. See The Niacin Flush I started with 500mg a day and slowly moved up to 3g a day. I rarely flush now and when I do it’s mild. There was a recent study on niacin and its potential benefit for genetic parkinson’s to slow disease progression. People with forms of early onset PD may benefit from Niacin.
    I followed Bill W. (who started AA)’s protocol.
  • Lion’s Mane 3g (6 pills) a day . I saw significant improvement in my fine motor control and bradykinesis with this dose. Lower dose didn’t help me. Lion’s mane contains NGF which helps repair nerves. This mushroom is pretty amazing. See Anti Stress Lion’s Mane Mushroom and Parkinson’s Disease. It also enhances cognitive ability and lowers stress. The dose I take sometimes causes mild itching.
  • Glutathione – I can’t say enough about glutathione. I get immediate improvement from the injections. We know that PD patients have reduced glutathione. We know it improves symptoms. Us LRRK2 folks don’t make it properly. It is a powerful antioxidant and reduces oxidative stress. I get injections from my naturopath, take an intranasal twice a day and a liposomal product orally when I travel. To have it work orally you need a liposomal product. Here’s a couple pubmed studies
    Glutathione and Parkinson’s disease: is this the elephant in the room?
    Reduced intravenous glutathione in the treatment of early Parkinson’s disease
  • Citicholine 1g a day has been shown to improve the effectiveness of l-dopa drugs like Sinamet. See Citicoline in the treatment of Parkinson’s disease . It seems to have some ability to repair the brain as well. My Sinemet doses last a long time, I think this is why.
  • Fish Oil 2g a day – helps increase dopamine in your brain and reduce inflammation, need I say more. Make sure to use a product that is tested for heavy metals and high in Omega 3s. See A Simple Intervention in Parkinson Disease?
  • Vit D/K2 – vitamin D may slow down Parkinson’s progression. Most of us are deficient in it anyway. See Study shows vitamin might be beneficial for parkinson patients with certain genetic makeups
  • Vit B multi – Sinemet can make you deficient in B vits so I take this to compensate.
  • Ginkgo is an antioxidant which increases dopamine and blood flow in your brain. I take a supplement with gotu kola, ginkgo and Siberian ginseng, 2 pills a day. Gotu kola also increases dopamine production.
  • Magnesium with calcium and vitamin C This supplement almost guarantees that I will sleep well! Magnesium lowers stress and relaxes muscles. If you have issues with constipation it also helps there. If I forget my magnesium my sleep is off. Sleep is what let’s us heal!

This protocol is working well for me. If you have something to add that has helped you please let me know!

And so begins a new chapter in my own journey with chronic disease

Friday, October 28th, 2016

Today will be my last day not being on a drug that I will take for the rest of my life. As of tomorrow I will come to rely on a drug so I can move the left side of my body normally again. But with this comes hope that I’ll be able to use my body in the way that I did before my nervous system decided to stop working a year and a half ago. I look forward to dancing normally, doing yoga, typing with my fingers (Yes I’m dictating this with my voice), and I look forward to walking without people asking me why I’m so stiff. Already with an herbal called Mucuna I’m getting a hint to what it’ll be like. With taking a small amount of this herb, I have energy again and feel like myself. My skin is no longer too tight on my body, I no longer feel so twitchy and out of sorts and I’m not as painful because of the rigidity in my muscles.

Three days ago I was diagnosed with early onset Parkinson’s. It didn’t come as a total surprise, I’ve been having symptoms for almost two years, although I’ve been hoping for a long time that I have a disease called dystonia, which isn’t so great anyway. You would think with this diagnosis but I would feel sad and fearful. But really I don’t, I have found that I’ve smiled more in the last few days than I have in awhile. This came as a surprise to me also, I had no idea I would respond to this outcome like this. In many ways it is freeing to know what I have, it’s an illness I share with many many people in this world. There are treatments for it and there’s promise that there will be better treatments and even a cure for it within my lifetime.

And I’m finding that I don’t want to fight this but I am convinced that it can be cured or kept in check by embracing it. I think the key is actually accepting it but not letting it take over my life.

In my cancer book I wrote “And in embracing life fully, I found that these dogs and cats didn’t progress into death. Once we have embraced death fully there is nothing left but to live. And live they did!” While I do not have a death diagnosis I feel the same. I plan on living fully! I look at the animals I treat that have cancer who live a long time and in many cases they aren’t in remission but their body has learned how to live with the cancer within it and it is not the cancer that kills them or even makes him sick. Many of them died of normal old age changes and live better lives than if they had not been diagnosed with cancer. So I think the key is finding peace within my body, within the fact that I will have to take drugs probably for the rest of my life. I think the key is opening my eyes to each day and not regretting anything that I don’t do. I think how to live with this disease, is to find happiness in every step of the way and to appreciate everything in every moment. To not say I’ll do that in 10 years, to let go of all resentments, to take ownership of living my own life in the best way possible. To find joy and move towards joy. When I am eighty someday, and no Parkinson’s does not kill you, I want to look back and not have any regrets of the things I didn’t do, especially the things I didn’t do while I could still do them. This is really no different for any of us whether we have a chronic disease or not.

Everyday I plan on telling my dopamine producing cells in my brain how much I love them and care about them. I plan on getting myself in the best physical shape possible and everyday making a conscious decision to move towards joy. I get to dance again!

I have not been me for a long time, if it takes a drug or two to make me me again, that’s okay. I look forward to what the future holds and I’m ready to meet it with open arms.

One last thing, please don’t feel sorry for me. I don’t and you being sorry for me doesn’t help me. This is part of my journey and I plan on learning and growing, loving and living!

Blessings!