Looking for some positive news please


#1

Hi,

I am newly diagnosed and am struggling to cut through the vast amount of information available, both written and online. Please see my post on the ‘Newly diagnosed’ forum for more details. Hence I would really appreciate help with the following:

Exercise – What really works? Running, Cycling, Tai Chi, Meditation or something like PD Warrior if there is a class locally or just by following the YouTube clips? How much exercise per day results in a positive effect and how long does the effect last for?

Food & Diet – At this moment in time I propose not to take the one a day timed release Mirapexin that the neurologist prescribed for me, as I would like to try and fight PD naturally as long as I can. This may be difficult as my symptoms are starting to show and I may be more in control when on medication. However, for now I would like to receive any advice on how to structure my diet, what to include plenty of and what to avoid etc.

I realise that everyone is different, but at least if someone is having some success with a particular diet then it is a starting point. Are there any simple natural, easily purchased MAO-B inhibitors and Dopamine agonist foods/supplements available that people find actually work?

Vitamins & Supplements - The same question applies to what vitamins and supplements i.e. which seem to have a positive effect? At which concentration do you take the product? Who are the ‘quality’ or ‘trustworthy’ brands?

Mental Health – One of the biggest issues for me is how I feel mentally. I no longer feel myself. I feel down, tired, and mentally shattered. I would like to know if anyone has had success improving their mental health using natural products.

Sleep – At present I am only getting about an hour before pain seems to kick in and my body tries to turn over waking me. Then I settle back for another hour before waking and turning again. Sometime I remain awake after turning for some time. When you add this lack of sleep to feeling low I find it very hard to be positive.
I would therefore really like to know whether anyone has found a natural way of addressing sleep and mental health issues.

Also for future reference I would like to know whether any of the medications help with improving sleep and mental health in terms of feeling more energised and positive

Apologies if my questions come across as a bit random and disjointed. I am feeling really ‘dazed and confused’ at present, so any comments/help/advice would be gratefully appreciated.


#2

Hi Dazed and Confused

I am also recently diagnosed (20 Dec 17) and have pretty much the same questions as you.

I'm on sick leave from work for another couple of weeks and have spent pretty much most of my time reading and trawling through every forum possible.

What I've picked up so far is that exercise is key as it is believed to slow down progression; some of the advice is any exercise and others advise the PD warrior, LSVT, rock steady boxing and Nordic walking. My PD nurse has referred me to the NHS neuro physio but there is a 12 week waiting list. The support worker from Parkinson's UK recommended a private one and I have an assessment this afternoon. I'll let you know how it goes.

I have been prescribed the lowest dose of ropinirole and I am hoping to start taking it at the end of the week. I have been advised about side effects but not everyone gets them or to the same degree. I am now ready to start taking them as people have started to ask why I'm limping and I'm struggling to use my left arm.

I've read all-sorts about CBD oil, mannitol and various vitamins, but think I'll do some more research as there are varying views and results from what I've read so far.

I've also used the time I've been off to get my pension, finances and other stuff such as notifying DVLA and car insurance.

I don't know if this is of any help to you or not, but I know I feel like I need to talk to people who understand what I'm going through. Also it's helped me talking to a few close friends and not having to hide it and they've been really supportive.

Jayne849


#3

Hi
I was diagnosed two years ago and still get overwhelmed with all the information and the do's and don't s
But for me the main thing that helps is exercise I'd say more than taking the Meds
I find swimming is the best for me and try to get every day, after only a couple of minutes of swimming makes such a difference
Also running helps for me and cycling to but anything is beneficial
I've found that making achievable short term and long term goals and targets help focus the mind and really helps when you're feeling down so you could incorporate exercise with these targets

Hope this helps a little
Paul


#4

Dazed and confused,

If you want to know if there is a pd warrior class near you rather than watch you tube as I suggested. Try looking at PD support groups in your area and see what they provide.

Cycling some recommend but I was told by my physio any excercise that puts you in a bending down position is not good. Thats just advice given to me and may not apply to you.

Arrange an appt with a neuro specialist physio for fitness advice.

Yes excercise as Paul and others say is crucial. John Pepper has written books on how 'fast' strenuous excercise in his case fast walking is beneficial. Google john pepper and read his story. Nhs recommend exercise and stretching excercises you can copy these from you tube if no class in yiur area.

Google or look on pd uk site there is lots of information and research papers.
Alternatively, you could discuss the issue of diet with a professionally trained dietician .

I take D3 as best type to address vit D deficiency but you need to check if you are lacking vit D first. Recommended dose varies and of course depends on what you eat that contains Vit D, taking supplements and getting vit d in diet, sunlight can cause problems, vit k2 is recommended to help.

It is really too much information to repeat and google search or any other search engine is a good resource.

Overdosing on natural supplements can harm you and cause negative interactions with medication you are taking.

Any diet or medication has to be individually tailored to your needs.
Excercise can be harmful in the sense that it may increase posture problems it is not all about keeping fit and excercise potentially slowing down the PD. It is about keeping upright not stooped, keeping your balance to prevent falls.
Nothing is that simple, get support pick up tips get pointers in the right direction.
Please read information available and discuss with a professional your health and well being are so important.

Take your time and work your way through it, website michael j fox in America is also a wealth of information.

Good luck and take care


#5

Hi,

Thank you to all of you who have taken time to reply and share words of wisdom and advice.

It is great to know that I am not alone and that others also have similar questions and a desire for more information.

Sorry I haven’t replied individually, being new to all this I did not know the format, so have waited and replied to you all in one go.

At the moment it is all still so confusing. I have asked to be referred to a neuro –physio but there isn’t one in the area. There is a private one, but they charge £95 for an assessment!

I have also asked about referral to a Dietician, but again been told not one available. However, I was told how to access private ones, again at my own expense.

As for PD Warrior, again nothing in my area.

It is very infuriating to think that having been given a diagnosis, I have decided to do something positive and proceeded to attack three key areas associated with PD i.e. mobility, diet and exercise, only to be told that in reality there is no support. How am I to know what stretching to undertake; what foods will help or best supplements to take; and what exercises will benefit me most?

It is starting to feel like I am meant to guess. And as we all know sometimes you end up guessing wrongly! So with that in mind I’ve started the long trawl of websites to try and find the ‘positive news’ I am looking for.

If I do find anything useful I will gladly share it on the forum.

Sending you all my Thanks and Best Wishes.


#6

Hi D & C

I agree - I was diagnosed about a month ago and have spent so much time online, reading anything and everything, and sometimes getting even more confused as to what I should be doing. The amount of information available is enormous, and of course it does no all apply to each of us - we all have our own variations on PD!.

think is it a question of trial and error, seeing what works for you. But take it steady, not too much at once.


#7

HI Dazed and confused
Just being diagnosed is a scary place to be. My PD nurse told me that it’s a slow disease, nothing is going to happen quickly. So there’s no need to rush.

Take your time reading things and don’t scare yourself by reading too much. It won’t change anything.The main thing is to keep being you. You’re still the same person you were before diagnosis. It’s just that now you know what’s the matter.

It’s important to keep active, doing as many normal things as you reasonably can. Take your time to find an exercise regime that suits you, we’re all different. In the mean time there are some useful exercises to follow on you tube if you look under “exercises for Parkinson’s”. Just look for something that appeals to you. Then you are more likely to be able to keep it up.

As for diet, I think you can’t go far wrong following a normal, varied, well balanced diet. You can always tweak it as you go along.
Try not to worry about what you can’t do. And most importantly remember to treat yourself from time to time.

It takes a while to get used to the idea you have PD, it’s not instant. Take your time. Best wishes Daffy (diagnosed 2016)