Hi everyone
Would anyone please give me some tips on how to use the forum.
Many thanks!
Hello Anniebe, and welcome
When you log in, just scroll down and choose a topic that seems most appropriate for you to post your comment/question. It really does not matter if you are unsure where to post - the moderatators will, if they think it best move your post and explain why they have done so. To view the lastest postings - click on latest activity (left hand side). The Search forum facility allows you to look back on past postings about a topic in which you may be interested, but you will need a "key" word or phrase e.g. problems with swallowing. The helpline 0808 800 0303 is there to be exactly that - a help. Do not be worried about using it - they are indeed very helpful.
The forum is changing in some way tomorrow, but will still be here to support, inform and advise pwp and their carers/partners
When you log in, just scroll down and choose a topic that seems most appropriate for you to post your comment/question. It really does not matter if you are unsure where to post - the moderatators will, if they think it best move your post and explain why they have done so. To view the lastest postings - click on latest activity (left hand side). The Search forum facility allows you to look back on past postings about a topic in which you may be interested, but you will need a "key" word or phrase e.g. problems with swallowing. The helpline 0808 800 0303 is there to be exactly that - a help. Do not be worried about using it - they are indeed very helpful.
The forum is changing in some way tomorrow, but will still be here to support, inform and advise pwp and their carers/partners
perhaps AB's excellent answer should become the basis of some sort of sticky on how to use the forum?
Welcome Anniebie!
Thanks annebernadette and turnip for the helpful posts.
Anniebie, I've sent you an email message with instructions for getting started on the forum. This is now something we send to all new users but we didn't yet when you joined.
Others might remember that we discussed this message here: http://bit.ly/ytwVpm
We've since updated it a bit to include information about private messaging. I've posted the latest version on that thread.
We're working on putting it in the menu on the left so that it is always easily accessible to community members.
As always, if there's something you think is missing do let us know.
Ezinda
Thanks annebernadette and turnip for the helpful posts.
Anniebie, I've sent you an email message with instructions for getting started on the forum. This is now something we send to all new users but we didn't yet when you joined.
Others might remember that we discussed this message here: http://bit.ly/ytwVpm
We've since updated it a bit to include information about private messaging. I've posted the latest version on that thread.
We're working on putting it in the menu on the left so that it is always easily accessible to community members.
As always, if there's something you think is missing do let us know.
Ezinda
Hello
i'm a 44year old lady, diagnosed a year ago, just finding the strength to cope, i have three beautiful children and i feel lonely, sad, confused, angry, and much more. my lifestyle has always been active and heathly. why??? i cry and i cry. my children are so young.
i'm a 44year old lady, diagnosed a year ago, just finding the strength to cope, i have three beautiful children and i feel lonely, sad, confused, angry, and much more. my lifestyle has always been active and heathly. why??? i cry and i cry. my children are so young.
Oh my dear annie123,
I do not know if we will ever be answer the Q why?. Sad,lonely ,confused and angry are such common emotions for fairly newly dx pwp.
You have made a brave decision to make contact with this forum. I hope and believe that you will gain much support and advice .
There is also much relief to you realise that you are not the only one, and along the way some excellent information and should you choose to visit the Social/Creative Sections, there is some fun to be had.
In the meantime ,if you are feeling so very low, may I suggest that you contact your GP/ neuro or pd nurse?
I wish you all the very best. I know that I do not need to tell you to enjoy your children
AB
I do not know if we will ever be answer the Q why?. Sad,lonely ,confused and angry are such common emotions for fairly newly dx pwp.
You have made a brave decision to make contact with this forum. I hope and believe that you will gain much support and advice .
There is also much relief to you realise that you are not the only one, and along the way some excellent information and should you choose to visit the Social/Creative Sections, there is some fun to be had.
In the meantime ,if you are feeling so very low, may I suggest that you contact your GP/ neuro or pd nurse?
I wish you all the very best. I know that I do not need to tell you to enjoy your children
AB
Hello Annie123
I'm so sorry to hear of your present desperate state.
Yes, it's good you've contacted the forum. Please also speak to someone you trust about how you're feeling. Or your GP or the helpline here. Do it for yourself & your children.
There is hope and life with Parkinson's too. All the best. ElleMac.
I'm so sorry to hear of your present desperate state.
Yes, it's good you've contacted the forum. Please also speak to someone you trust about how you're feeling. Or your GP or the helpline here. Do it for yourself & your children.
There is hope and life with Parkinson's too. All the best. ElleMac.
Hi Annie
some advice if you want it:
you have three beautiful children - reasons to feel happy and grateful. I have one beautiful child and one slightly funny looking one, though very loving. They will cope and might help you cope too.
Why us? A natural question we all ask but one you are unlikely to get an answer to.
Better to look forward, not to years from now, but what we can do in the next year- keep active, keep fit, deal with each symptom one at a time.
And the longer you can keep the symptoms at bay the more time there is for new treatments to be developed. Fight it all the way.Live as normally as you can.
For many people the first year or two are worse than the following ones as they get used to the new situation and as they settle into a medication regime. Take a close look at your meds (if any) to check they are not causing extra anxiety or depression.
good luck
some advice if you want it:
you have three beautiful children - reasons to feel happy and grateful. I have one beautiful child and one slightly funny looking one, though very loving. They will cope and might help you cope too.
Why us? A natural question we all ask but one you are unlikely to get an answer to.
Better to look forward, not to years from now, but what we can do in the next year- keep active, keep fit, deal with each symptom one at a time.
And the longer you can keep the symptoms at bay the more time there is for new treatments to be developed. Fight it all the way.Live as normally as you can.
For many people the first year or two are worse than the following ones as they get used to the new situation and as they settle into a medication regime. Take a close look at your meds (if any) to check they are not causing extra anxiety or depression.
good luck
Crying is normal, crying a lot is normal, sobbing is just par for the course. I'm a believer in all three but even more of a believer in talking. This cannot be to just anybody, a good listener is hard to find, a good listener who genuinely understands is almost impossible to find. This is why this forum is a godsend: we are good listeners and you can take our empathy for granted. Most of us have been there but not take your experience as trivial, this is extremely important.
I have a 17-year-old daughter who is now old enough to understand more about PD and even has a link on her Facebook. This, however, does not mean that she is okay with it all: there are times when she also needs to talk.
That said, my hubby and my daughter between them pull me through everything. I have spent too long feeling sorry for myself and not enough time enjoying people around me. Learn to live with PD is not the same as giving in to it, in fact learning to cope successfully is the same as putting two fingers up to it.
I have a 17-year-old daughter who is now old enough to understand more about PD and even has a link on her Facebook. This, however, does not mean that she is okay with it all: there are times when she also needs to talk.
That said, my hubby and my daughter between them pull me through everything. I have spent too long feeling sorry for myself and not enough time enjoying people around me. Learn to live with PD is not the same as giving in to it, in fact learning to cope successfully is the same as putting two fingers up to it.
Many thanks for your help x
Hi Everyone,
I,m a 58 yr old female into hiking, rock climbing, backpacking and ski-ing. Over the last 10 yrs I have experienced countless symptoms and felt that something was definitely wrong with my body. During that time I have had so many tests that I was embarrassed every time that I visited my GP only to be told that everything had come back negative and to come back when I had other symptoms.
To cut a long story short I was dx with PD last week at Newcastle RVI. It was not a complete surprise as 5 weeks previously I had received a copy of the letter from my neuro to my GP which said that the DAT scan was abnormal. I started on medication on 8th March and in 9 days have noticed welcome changes.
I have never been a person to take things lying down and am determined to take control of my life and not let the PD dictate.
In December 2011 I could barely walk half a mile and the only respite from pain was when I slept. My new year resolution was to take back control and since then I have exercised regularly, no pain no gain! Last Thursday along with a friend I walked 7 miles over 3 of the Lake District Fells. It was hard work at times but I had no aches or pain afterwards. There is still a long way to go before I regain full fitness but I am on the way.
My long term target is to keep the medication to a minimum, exercise as much as possible and stay positive.
Love to you all.
I,m a 58 yr old female into hiking, rock climbing, backpacking and ski-ing. Over the last 10 yrs I have experienced countless symptoms and felt that something was definitely wrong with my body. During that time I have had so many tests that I was embarrassed every time that I visited my GP only to be told that everything had come back negative and to come back when I had other symptoms.
To cut a long story short I was dx with PD last week at Newcastle RVI. It was not a complete surprise as 5 weeks previously I had received a copy of the letter from my neuro to my GP which said that the DAT scan was abnormal. I started on medication on 8th March and in 9 days have noticed welcome changes.
I have never been a person to take things lying down and am determined to take control of my life and not let the PD dictate.
In December 2011 I could barely walk half a mile and the only respite from pain was when I slept. My new year resolution was to take back control and since then I have exercised regularly, no pain no gain! Last Thursday along with a friend I walked 7 miles over 3 of the Lake District Fells. It was hard work at times but I had no aches or pain afterwards. There is still a long way to go before I regain full fitness but I am on the way.
My long term target is to keep the medication to a minimum, exercise as much as possible and stay positive.
Love to you all.
Hi Topsy,
I read your post with great interest. I can give you a few years at 72 and was never quite as active but like you once I got the dx three years next May and the meds kicked in I made up my mind to be as fit as possible. Like you I had noticed various things not quite right for at least ten years but a car accident triggered a tremor and dx ensued. A couple of months before dx I started to walk "funny" at the end of walks in Portugal and was blaming the boots, the pace of the walk etc. etc. I have just got back from a two week Ramblers holiday in Nepal sightseeing/6 days trek at lower altitudes. I have gone up and down thousand of stone steps for 5-8 hours a day admittedly under the watchful eye and occasional helping hand of one of the younger sherpas due to my laces tangling and a headlong fall early on due to the fact that the leader couldn't be asked to allow me to get my boot hooks sorted out at the beginning of a walk - but that's another tale Now I'm back home with my stiff hips which started returning just after Xmas and I can't imagine how I did it. I think that the older you are the more the use it or lose it" principle applies. I look forward to reading more about your progress.
Best wishes
I read your post with great interest. I can give you a few years at 72 and was never quite as active but like you once I got the dx three years next May and the meds kicked in I made up my mind to be as fit as possible. Like you I had noticed various things not quite right for at least ten years but a car accident triggered a tremor and dx ensued. A couple of months before dx I started to walk "funny" at the end of walks in Portugal and was blaming the boots, the pace of the walk etc. etc. I have just got back from a two week Ramblers holiday in Nepal sightseeing/6 days trek at lower altitudes. I have gone up and down thousand of stone steps for 5-8 hours a day admittedly under the watchful eye and occasional helping hand of one of the younger sherpas due to my laces tangling and a headlong fall early on due to the fact that the leader couldn't be asked to allow me to get my boot hooks sorted out at the beginning of a walk - but that's another tale Now I'm back home with my stiff hips which started returning just after Xmas and I can't imagine how I did it. I think that the older you are the more the use it or lose it" principle applies. I look forward to reading more about your progress.
Best wishes