What can we do for ourselves to improve our situation?

[marchtoo]

Hi all, it's 5 am and I can' t sleep (again), so I thought it was time to share m thoughts on some of the research I have been doing into possible ways of improving my lot. Please bear with an typos i miss, as apart from PD I have to contend with a keyboard with a broken "T" and a cat that insists on climbing inside my dressing gown (it's b***** cold in Christchurch).

I was diagnosed with PD about six years ago and was told very little about he disease and even less about what could be done to slow down the inevitable decline. I was told that, with luck, there would be about a ten year "honeymoon period" before the symptoms would really kick in and have to be managed. In the meantime, 'here's some pills, come back and see me in about a years time and we'll change the dose, if necessary'. So, after a few years of this, and with more time once I had retired ( I'm 67 now). I decided to find out if there was more I could be doing. I have read a lot of books since then, some rubbish, some valuable, and have come up with some ideas that I want to share, Nothing is all that earth shattering, but I put it out there to discuss. i will give the titles of the books (if I can remember them exactly) I have found to be most useful.

Firstly, one thing I have found very useful to me - I was approached by the NZ Brain Research Institute (formerly Van Der Val inst) to take part in some research programmes, so every couple of years I get a test of my memory and cognitive ability, so I have a definite record of my current status and and changes.

DIet

This appears to be more important than is currently recognised by the medical profession. There has been a lot of recently published information of the importance of good nutrition, most of which has been dismissed as fads , but there are some common themes that are worth checking on. If, as recently stated at a PD society information session, chronic constipation is now recognised as a symptom of PD, shouldn't we be looking at ways to improve our diet and reduce our need for dealing with this uncomfortable problem? It would seem the various "low carbohydrate , good fat" diets have a case worth considering. I have been reducing my carb intake and increasing "good" fats (olive oil, coconut oil, and butter, cream and fat from healthy grass fed animals), and adding good protein and lots of (above ground) vegetables. I'm still working on my sugar addiction!

Books:

What if there was a cure for Alzheimers

Grain Brain

Healthy brain, happy life

The Paleo Approach

Practical Paleo

The Coconut oil Diet

The woman who Changed her Brain

Exercise

I go to a exercise called PD Warrior here in Christchurch, it was developed in Australia. The book Healthy Brain, happy life also mentions an exercise group that targets that improve the brain functions. It seems that the best workouts are vigorous and varied to stimulate the regrowth of brain cell connections

Brain stimulation

I'm not talking about surgery, but i seems that the more we use our brains the more brain we keep. several books mention "neuroplasticity' , whereby your brain can be stimulated into renewing damaged cells by constantly challenging the brain with new stimuli, puzzles, learning a new language, a new skill, whatever. I haven't seen any research specifically with PD, but, hey, what's there to lose?

Blackcurrants

I've heard there were "promising" results in a recent study of the beneficial effects of blackcurrants. It will probably be years before anything comes of it, but in the meantime I have started taking a blackcurrant supplement - again what hove I got to lose!

I hope this is of interest or help to someone. It seems to me that we don't have to sit back waiting for things to happen, if we just knew what we could do.

[oldlux]

I think you are on the right track. I have a PD condition bought about I believe with too much heavy metal in my system, mainly lead and arsenic, I burnt hair in an atomic spectrograph and this was confirmed by two brain scans. I have not had another hair sample after 6 years but am due another brain scan at the end of 12 months. I have always been on a macrobiotic diet - Japanese, and it has the theoretical - I think true - effect of increasing the bodies immune response and increasing the brains capacity for action by decreasing acidity, the brain electricity being anions.

I have to go but I have more to add but am keen to be involved with looking deeper.

Cheers

[rhyspeace12]

My husband started on legal medical marijuana two weeks ago and feels calmer and his tremors are much less.

[Hikoi in reply to rhyspeace12]

Medical Marijuana - available in NZ then? I don't think so.

[Anna55]

Hi, My name is Anna . I was diagnosed in 2011 at the age of 49. At first I did not want to know what was ahead.but now as my needs are changing and I have more courage I have been investigating too. Your email comes at a very fortuitous time. So it has been very helpful. My experience sounds similar to yours with a lack of information from the doctors. I am about to change my neurologist because of this. I was never told that exercise was important just asked if I was doing any. And when my foot started to cramp she didn't tell me it was dystonia. I read that on the internet after many frustrating nights of pain and then found out it comes with muscle wasting and weight loss, my current problem. Have you had any experience with the drug Amantidine?

Thank you for your thoughts

Cheers from a fellow Cantabrian

[marchtoo in reply to Anna55]

Hi. No i haven't tried Amanatine. I was prescribed Ripineral, but after the gradual getting up to dosage period , I experienced leg and ankle swelling . I cut out the Ripinerol, but the symptoms stayed, so we were not sure if it was the PD medication, or something associated with the cancer meds I was also taking. Nobody seemed very interested in finding out the cause, so after having been given advice on how to manage it, I was left to manage as best I could. ($120 for a pair of elastic stockings? -don't get me started on this).

There is a booklet available from the Parkinsons society called The Drug Treatment of Parkinsons - you might find this helpful.

If you can get o Chch have a look into PD Warrior -- There is a website, and is run in Chch by Muscles Physiotherapy. It's not cheap, but you might be able to get a disability allowance from WINZ. Even one session would be a help, if only to show you are not a;one.

[Anna55 in reply to marchtoo]

I had the same sort of issues with Amantdine. I took one tablet for two weeks and ir worked well,sorting out the highs and lows, then I took the second tablet. Major insomnia, followed by every side effect they listed. I am now withdrawing from it after 5 weeks, not nice it makes the PD worse. I am hoping this is temporary. Ripinerol was next , won't be trying that.

I will keep in mind what you said about the exercises , thanks.

[goldengirl91 in reply to Anna55]

I was on Amantidine for a year and experienced swelling of my ankles and feet, also developed a red rash on my arms and legs. I was changed to sinimet and ropinorole and found these very good for me.

[goldengirl91]

Interesting reading' marchtoo' .I have also done research with Van der Vere, and have just finished an exercise programme called LSVTBig. which I found very good. It was four weeks of fairly intense exercises, instructed by a phsyio. who comes to your own home.I now run through the exercises on my own each day

[marchtoo in reply to goldengirl91]

Hi there, yes I have heard of LSVTBig from the physios that run the PD Warrior programme, but haven't heard of any programme running here. I wonder why the parkinsons society don't run these programmes? I am no good at doing exercises by myself at home - I do have a rower and a cycle - these are OK because I can set the timer and the rate, so it keeps me going. Same with aquajogging, I do better, when i go with my cousin!