OK... Now I'm worried :(

Might be useful to read some research data on chronic inflammation linked to PD.  Explores role of exercise in reducing chronic inflammation.    Article title" effect  of exercise training on chronic inflammation " NCBI, NIH. google it, the information is all correctly referenced and dated.

Hope everyone ok x 

Hey, thanks once again for all the advice everyone.

I have one more week of school and then I'll have plenty of time to research and try things out :)

I have a telephone consultation with the doc on Thurs when I think he will discuss referral to a neurologist.

When you've got a bit more time, may be worth googling "pd Warrior" and "forced" cycling for PD (suggested maintaining over 80rpm).

I'm a few years post diagnosis and more and more I'm realising that diet and exercise are the main things that I may be able to control that may slow progression.

Hope your results come back soon.....waiting is the worst thing!

 

Nick

Hi Emvee,

I was diagnosed 2 years ago, after suffering symptoms for some time before that. What I would say, is that even at my age, 72, the most relief from symptoms comes through exercise. I look after young grandchildren during the week, walk and do Pilates . I also sing in a choir, which is great for projecting the voice. I really don`t sit for too long. If you can a few minutes of stretching can help. I also found PD Warrior helpful.

Frances

Hi Emvee

I agree with all these comments about exercises. I don't think it matters what you do as long as you keep active. It's probably best to do things you like as then you're more likely to keep it up. I tried gym membership some years ago and hated every minute of it. Now I concentrate of walking the dog, I meet a lot of nice people to talk to that way, and Tai Chi which gives some really good stretches that I find very good for me. just try what interests you, you don't have to keep it up if you don't like it; you could just try something different until you find what interests you.

Think I'll have to try for a bit of cycling during the hols then, as I used to love it when I was younger.

Nick / Buzbyc Iw as interested that you say that diet makes a big difference. What kind of diet makes a difference? I am already a pescatarian and have been since I was 18.

Hi emvee,

If you start googling phrases such as Parkinsons and gut-brain connection there is an increasing numbers of studies which suggest that PD starts in the gut in at least the majority of cases. 

Personally I'm currently trying the Ketogenic diet (low carb) which has a very small amount of evidence suggesting it may be helpful for PD sufferers.  I can't say definitively whether it has benefited me yet, apart from saying that I've lost about 8kg when combining it with exercise and feel generally a lot better. Again I'm increasingly reading things which suggest that inflammation is connected to PD, and there is a clear explanation for how eating a high-carb Western diet causes an inflammatory response.

Hope that gives you a bit to go on.

Nick

Hi Emvee

I haven't tried any special diets but 2 years ago I did start taking a  daily kefir drink. This costs a fortune in the supermarkets but if you google kefir grains there's a whole load of info out there. i bought some grains 2 yrs ago for around £16 and have been making our own ever since - from only one purchase of grains. All you need is the grains and organic whole milk to get your own perpetual brew going. I grow mine in a kilner jar in the kitchen.

Kefir boosts the guts natural brew of probiotics. Since taking it (an acquired taste admittedly!) we have not had any tummy upsets and coughs and colds are rare and short. Could be a coincidence I know.

I've never been overweight except briefly after having my children, never smoked am only a moderate drinker. I was brought up a vegetarian on a well balanced diet and still am vegetarian now. It's no chore to me as I'm quite happy with my diet. Though my son did take it very personally when I was diagnosed with PD despite my so called healthy lifestyle. Daffy.

Hi all, 

Just back from my first Tai chi class. I do yoga and pilates too but I found the tai chi so relaxing. I may feel the stretches tomorrow. Booked 10 so I hope it helps. 

I do find the diet confusing. I have lost weight over the last few months so I want to maintain it. I believe (please correct me) that good fats ie avocado and nuts are good for you? I eat fairly healthy with the odd vice (vino). 

The low carb diet is certainly one I believe is very healthy as eating refined carbs like white pasta is like eating sugar as your body turns it into sugar almost straight away.

The thing that confuses me is that I'm sure I read that PWP should avoid protein during the day and only eat it in the evening because otherwise, it interferes with the absorption or effectiveness of dopaminergic medication.

Is that true, or did I get it wrong?

Oh, also I had a doctors appointment today. Bloods all normal so no cancer. Yay!

The doc has sent off an urgent referral today to a neurologist.

My wife thinks I should pay for a private consultation to be seen quicker. What do people think and how do people go about doing this?

The NHS choices website I looked at that allows you to compare hospitals shows that the one I am being referred to has an average wait for first neurology appointment of 33 days. Whereas most of the other hospitals in the area have waits of around 80-90 days.

Hi emvee, 

I ended up going private for my results and got an appmt the following week. We went through my husbands insurance. The same consultant took me on as his patient on NHS. Having said that 33 days is quick but I guess feels long if you're waiting for a diagnosis. 

Just to update:

The neuro appointment came through just a couple of weeks after the gp referral.

Neurologist doesn't know what it is but is fairly sure it is something neurological. He said to do a couple of MRI scans first and then if they didn't show anything would move on to doing a DATscan.

Had the MRI about three weeks ago but no results yet or contact from neuro.

And now I have a DATscan next week. Scary monsters!

Hi emvee,  the DATscan isn't as bad as the MRI scan, so don't be too worried. Hope all goes well for you and you get some results soon.

Twinks.

Oh, I'm not worried so much about the scan itself, rather what it might reveal.

These scans just make everything that is happening all the more real :(

All rather worrying.

But which is more worrying- a normal scan, or an abnormal one? You have to consider both eventualities, and expect either. Neither would be a comfort for sure. 

DATscan done yesterday.

Now the waiting game :(