Toonarmy, from my humble experience working in Switzerland and then returning with a thump to the UK, I can understand how you have so many vivid memories that you want to share with other people but that maybe they cant appreciate. Once at a mothers meeting, I felt like standing up and saying I have barbecued sardines on a mountain, I have lived with peasants in Italy etc. I have heard that soldiers returning into civy life often find it difficult to settle into peacetime because noone around them understand what they have been through.
Time has passed now and with PD I have seen that my loved ones are the most important thing. I hope things work out and you can still realize some dreams. I was diagnosed at 57 and am 63 now.
thankyou polly i just get so annoyed as to why i got this at my age im only 40 and i have had it for 3 years now so its unfair especially when i was fit and healthy i was told about about the pd diet that was on the pd website but cant find it if anyone can email it then tell me and i will send them a personal message telling them my email address i was going to take my daughter to the pictures this morning but not having a good day so my partner who also has neurological problems ie ms took her instead so im not pleased on that but never mind i would love it if any one on the forum has any kind of idea how it can happen in the first place i know if they knew how parkinsons happend in the first place then they would have a cure but i need to get any kind of help mainly to tell my parents to reasure them any kind of help either on the diet and the pd will be helpfull thanks
Hi TRikey. Hope you enjoy your day at Eastwood Hall. I considered going as I live in Nottingham but unfortunately the wrong side and as I can no longer drive it was not possible. However it looks to be a very interesting day. Enjoy.
Thanks Vivian, you've confirmed what I've been thinking for a while, like your friend I have a light non protein breakfast the rest of the week, but on a Saturday we like bacon and egg or perhaps poached eggs or whatever and lo and behold I very often have a bad day on a Saturday. As from tomorrow I think we will swap to having our bacon and egg perhaps on a Friday evening. Thanks for your very helpful post.
Leogirl
Leogirl
hello leogirl i had a salad with chicken and had eggs with it about an hour ago and i felt rotten still if anyone has a copy of the pd diet can you email it to me when i see your name hoever it is i will private message you and tell you my email address i read on the micheal j fox website that a problem with parkinsons can stem from the gut this is being tested its not fully conclusive as yet but hope you feel better soon
Hi Leogirl and Toony,
Sorry you can't find the fact sheet I have retired from the branch now so I don't have the boxes of information with me but I will do my best to get one for you. In the late eighties we belonged to the younger group called the Yapper's and we all felt that a lot more could be done to assist research and to get a much clearer picture of this condition if the docs concentrated on this group, I really hope that with the forum this can be, as we were told that protein didn't affect pd and people with pain were told that it was not because of pd, now there are fact sheets on these so you see how it can help, I just hope you are all making some noises really [u]loud ones[/u] so that people listen to you. I also wish I could have kept a diary on my husbands life with pd so if you are able to please try as it could be so helpful. My husband is donating his brain and we had to fill in all the forms but I think it would be good to have them earlier as you could chart the changes in his condition better.
I hope I don't upset people with my comments I just feel it would be wrong not to share our experiences and they may be able to help some of you.
best wishes
vivian
Sorry you can't find the fact sheet I have retired from the branch now so I don't have the boxes of information with me but I will do my best to get one for you. In the late eighties we belonged to the younger group called the Yapper's and we all felt that a lot more could be done to assist research and to get a much clearer picture of this condition if the docs concentrated on this group, I really hope that with the forum this can be, as we were told that protein didn't affect pd and people with pain were told that it was not because of pd, now there are fact sheets on these so you see how it can help, I just hope you are all making some noises really [u]loud ones[/u] so that people listen to you. I also wish I could have kept a diary on my husbands life with pd so if you are able to please try as it could be so helpful. My husband is donating his brain and we had to fill in all the forms but I think it would be good to have them earlier as you could chart the changes in his condition better.
I hope I don't upset people with my comments I just feel it would be wrong not to share our experiences and they may be able to help some of you.
best wishes
vivian
sorry toonarmy I got the name wrong!
Sorry folks back again,
Just thought Toonarmy you may not know but if you and your partner both have to care for each other you may be able to get carer's allowance for each other. I say this because I was told I couldn't get it as I was disabled myself and have just found out in the last six months that I should have got it (25years too late now) but worth checking out. I also know this is not the right thread so sorry about that.
really going now best wishes.
vivian
Just thought Toonarmy you may not know but if you and your partner both have to care for each other you may be able to get carer's allowance for each other. I say this because I was told I couldn't get it as I was disabled myself and have just found out in the last six months that I should have got it (25years too late now) but worth checking out. I also know this is not the right thread so sorry about that.
really going now best wishes.
vivian
Hi toonarmy,
I'm not sure if this is what you were looking for but there are a number of helpful pieces of information on diet and Parkinson's here: http://www.parkinsons.org.uk/diet
The page includes our Diet and Parkinson's booklet, a transcript of our Q&A and Diet and Parkinson's and a link to our page on Diet and Parkinson's medication.
I hope this helps.
Ezinda
I'm not sure if this is what you were looking for but there are a number of helpful pieces of information on diet and Parkinson's here: http://www.parkinsons.org.uk/diet
The page includes our Diet and Parkinson's booklet, a transcript of our Q&A and Diet and Parkinson's and a link to our page on Diet and Parkinson's medication.
I hope this helps.
Ezinda
Hi Ezinda,
I was given a copy of 'Parkinson's Disease - reducing symptoms with nutrition and drugs' by Dr. Geoffery Leaver and Lucille Leaver recently. It was a fascinating book and made some very valid (IMHO) points, especially about the timing of food and medication.
I am a great advocate of reading as much as possible about all aspects of PD, it helps me make informed decisions when as a layman I find myself talking to the medical world.
Regards
007.
I was given a copy of 'Parkinson's Disease - reducing symptoms with nutrition and drugs' by Dr. Geoffery Leaver and Lucille Leaver recently. It was a fascinating book and made some very valid (IMHO) points, especially about the timing of food and medication.
I am a great advocate of reading as much as possible about all aspects of PD, it helps me make informed decisions when as a layman I find myself talking to the medical world.
Regards
007.
Hi 007,
I actually hadn't heard of that one. If you recommend it maybe I should pass the information along to our publications team. They often do reviews of Parkinson's literature.
Thanks for the tip!
Ezinda
I actually hadn't heard of that one. If you recommend it maybe I should pass the information along to our publications team. They often do reviews of Parkinson's literature.
Thanks for the tip!
Ezinda
Hi toonarmy I was dx last nov at 52 and still uncertain about alot of things but I do know that if you feel depressed it has a knock on affect to the pd.arrange to do something in the future to look forward to.(something you've always wanted to do).i was depressed a lot I'm now looking forward to going on holiday in our new static vanbh.ill have to much to do looking after the kids to worry and it will give them memories of a dad and not a ill dad with pd.i know it's hard to be positive but you've got to work at it.im still waiting for a good day mine just get worse.if anyone on the forum can help I've now got a tightness and numbness on my right side face and top of hesd.it feels like ants crawling around and it's very annoyinh.
Twins99
Twins99
hi twins 99 im currently experiencing alot of numbness down one side of my leg and im getting what feels like burning hot water being poured over my leg constantly its horrible and zombie like features as if i was gazing into space with my mouth wide open like a stroke its not nice
well so much for a forum my last message was last week no comments time too log out i think
Sorry I havent experienced what you describe.
Anyone else who can help Toonarmy?
Hi Twins 99 and toonarmy,
It sounds like it would be a good idea to contact our helpline and arrange for one of our nurses to give you a call back. The number is 0808 800 0303.
Alternatively, you can write to hello[at] parkinsons.org.uk.
I hope this helps.
Ezinda
It sounds like it would be a good idea to contact our helpline and arrange for one of our nurses to give you a call back. The number is 0808 800 0303.
Alternatively, you can write to hello[at] parkinsons.org.uk.
I hope this helps.
Ezinda
thanks for your help 007. you are right of course it is all relative, some days I forget that I have got pd, how nice is that! depression is at bay, had a good week but going down a little now. Son is getting married next week so hope taht goes well!
ta also for the advice about sinemet. also on mirtazapine, increased dose slightly to one 15mg tablet per day (from half), has improved matters I think?
ta also for the advice about sinemet. also on mirtazapine, increased dose slightly to one 15mg tablet per day (from half), has improved matters I think?
Hi toon army
Just abit about myself.ive a wife and three kids.stepson has diabetes,13 year old twins ,girl is in a wheelchair with cerebral palesy she Los turned diabetic on holiday and the lad has aspergers.i was dx last nov had symptoms or 15 year at least every sort of pain everywhere.constant cramps in legs,falling forward,hot legs same as you.tight facial muscles which came on in seconds thought I was having a stroke. I have three hours sleep at night.right hand tremor,writings small,speech is low,I choke and bit my tongue when I eat,constant headache.for the tight facial muscles i find chewing helps so I get gum.i don't have much time for depression.seems like pd is progressing constantly,so I've bought a caravan at the seaside ,something to look forward to.yes I get depressed I expected to push my little girl about and look after my family.ho knows what's going to happen but I try to keep smiling. All the best. Twins99
Just abit about myself.ive a wife and three kids.stepson has diabetes,13 year old twins ,girl is in a wheelchair with cerebral palesy she Los turned diabetic on holiday and the lad has aspergers.i was dx last nov had symptoms or 15 year at least every sort of pain everywhere.constant cramps in legs,falling forward,hot legs same as you.tight facial muscles which came on in seconds thought I was having a stroke. I have three hours sleep at night.right hand tremor,writings small,speech is low,I choke and bit my tongue when I eat,constant headache.for the tight facial muscles i find chewing helps so I get gum.i don't have much time for depression.seems like pd is progressing constantly,so I've bought a caravan at the seaside ,something to look forward to.yes I get depressed I expected to push my little girl about and look after my family.ho knows what's going to happen but I try to keep smiling. All the best. Twins99
hello everyone just heard about a fundraising event at west denton social club next saturday 21st at 7.30 for younger pd sufferers, raffle and groups on stage..does anyone have any more information, or information about any others up and coming events..