Hi all,
Probiotic supplements to get your gut bacteria balanced, might help given the indications from research. xxx
Just weaned myself off sinemet , feel better bit slower but will see how it goes more physio at end of month, so may be a bit more speedy next month. Rasagline 1mg and Ropinerole back down to 4mg and painkillers Naproxen got dignosed 2008 and want to get a bit further down the road before I have to contemplate side effects of taking levopda long term. I think theres some merit in being in an "off" state all the time rather than this "on" "off" thing, thats just me and probably easy for me to say as only 9 yrs into this, and we are all different to get to full mobility would take too many meds so choose to be a bit shaky and slow.
Take care xx
Hi all,
The probiotic recommended, (although it's not really a probiotic), is Kefir, pronounced kee-fer. You can buy two different types in Asda, apparently. It's made from small, gelatinous beads that look like grains containing a variety of bacteria and yeasts and left in milk to ferment. Sounds delicious!!!!
Here's the link: https://www.bbcgoodfood.com/howto/guide/health-benefits-kefir
Havent tried it yet, but may give it a go. Will let you know the results!
Twinks.
Hi,
My husband and I have been taking Kefir for two years now. We've had no tummy upsets since and even feel that colds etc are shorter than they used to be. It's expensive and pasteurised from the shops so I bought some grains on line for around £16 and have produced our own from those grains ever since.
I make it in the kitchen in a kilner jar with the lid loosely on. Use only organic whole milk as non organic may have traces of antibiotics that would kill the kefir. I put it through a sieve once a day. Put the liquid in a jug in the fridge for morning. Put grains back in rinsed out jar with more milk. Job done! Plenty of advice on line as to how to do it.
It is an acquired taste and a bit sharp which is why we take ours straight from the fridge in the morning before we have breakfast. It does separate out and look yucky but give it a brisk stir and drink quickly! Start with a small amount first so that you don't shock the tummy. But we both feel the better for taking it and neither of us would think of stopping it now.
Hi Clemmo
Re other family members noticing symptoms before diagnosis. My son and daughter both independently thought maybe I had parkinsons but my long suffering husband who said he felt he had been "treading on eggshells for months" thought I was anemic - bless him!
Take care Daffy
Hi Clemmo and all,
My Senior Officer and I take Organic Prebiotic Inulin fibre, which we buy on line.
We saw one of Dr Michael Moseley’s programmes about substances that may help sleep. Prebiotic fibre was one of them. It also, it is claimed, promotes the health of good bacteria in your stomach.
We have found it helps a little with stomach and gut functions and we find it does help a little with sleep.
I won’t go into all the blurb, suffice to say there is lot’s of information on line.
Caveat!
It might not suit everybody, so ask advice.
Jules77
(In between attacks).
Thanks Daffy for the information. You sound well into your Kefir! It sounds a bit of a phaff to prepare, but I suppose once you get it going, it's easy. Pleased to hear that it seems to help. Will definitely try some. Also interested to read your post Jules77.........will read up on your fibre too!
Twinks.
Hi TeeHee,
I can relate to that, I am so intolerant of so many things I am wondering as I am in the early stages if anything to profound can wait, It is not just me it seems to be a family thing both my sisters have trouble tolerating medications, and all 3 of us are analgesia intolerant, I think I will try some reflexology, or massage as I think Twinks suggested, I must say though since finding all you lovely people I am much more positive, went to my seated exercise class today.
C xx
Hi Clemmo,
Must get my diet sorted out and in a routine. Sounds great what you are doing and try not to give yourself a hard time. I am spurred on by this site too xx
Hi Everyone,
I really don't know which way to turn I didn't respond to simenet at all in fact tremors only got worse, and spread to my neck lips and jaw and other arm, locum GP told me to stop meds as he suspected I have a kinetic essential tremor task specific as I do not have a resting tremor in fact the only time I get any peace is when I am resting in bed or in the arm chair then the minute I get up off it goes. I have asked GP for a second opinion but looks like that isn't going to happen until at least March as they are very short of neurologists in this area.
I think it doesn't hep that I have other things going on which is making their diagnosis difficult I have Paroxysmal atrial fibrillation ACCP positive palindromic RA and fibromyalgia all of which I am informed can cause the tremors. it also doesn't help that they have been unable to find any medication for any of those that I can tolerate apart from the PAF for which I am on Warfarin and Bisoporol.
Any suggestion from you lovely knowledgeable people would be much appreciated
Clemmo x
Hi Clemmo, I can’t really offer any advise as I am fairly new to all this myself being diagnosed in August. What I can say is that the med thing seems to be hit and miss. I am still suffering with my symptoms and the meds dont seem to be doing anything. Finding it very frustrating but remaining optimistic as I’m sure a solution will be found.
Keep the faith
thanks for replying Wildrover,
I agree so frustrating, optimism is the only thing we have, I speak to other people with PD who say once they got the medication they were fine and could get on with things, I can't wait for that day, I have also been experiencing pins and needles in my fingers and feet and sometimes in the side of my face, don't know if PD causes it.
C x
The pins and needles is probably PD, I often wake up with a numb hand as if Ihave been sleeping on it when I haven’t
Clemmo /linda,
Just catching up on new forum… How are you ? Any news on medication or physio.
I really hope you are ok. Xx