Meet and Greet


#1
Hi I am new to Forum. I have had Parkinsons for 15 years but was only diagnosed in 2003. I am looking for information from others as to how the condition has deteriorated and in particular if anybody suffers with terrible back and abdominal pain as I do.

#2
Hello chorleygrandma. Welcome to the forum, it's good you have finally taken the plunge. You didn't mention how you are doing after 15yrs, but it sounds as if you are suffering from pain. I have been diagnosed for 6 months now, but, as is usual, have had symptoms for a long time. Like you, I have a very bad back, and when I asked my neurologist if it had anything to do with PD, he gave a superior little laugh and said no. However, I am convinced it has. It comes and goes like other symptoms. Some days it is terrible and other days I can hardly feel any pain at all. My neurology physiotherapist thinks it is PD related, and has given me exercises to help. I've only just started them so I don't know how much they will help yet.
I do hope you can get some help. Do let us know a little bit more about yourself, that's if you feel comfortable to do so.
Kind regards, Carole

#3
Hello CM, welcome to the forum. Wish you the best and we'll try to get your questions answered. PS,,,I live about 5 :stuck_out_tongue:miles from you.:grin::grin:

#4
a big welcome chorleygrandma. I was diagnosed in March 2009 , but had symptoms for many years. At first I found the progession of PD syymtoms to be very gradual, but over the last 6 months thet seemed to have escalated rather quickly. My consultant tells me that this is because I am undermedicated. Try not to be alarmed about the progression of the disease. I have found that it waxes & wanes. I appreciate the waning times!
Like butterfly I have back pain from time to time which I am sure is PD related. My physio tells me that it is a postural thing , has advised me on exercises & yells at me to "walk tall"!
With best wishes

#5
Welcome to the forum Chorleygrandma (wow that's a long forum name can I call you CG?). I was dx in November 2009 and for the first 12ish months was relatively pain free. But over the last few months pain in my back, right leg and arm (I'm right side affected) has got increasingly bad. My GP is very sympathetic and is sure it is PD related. I don't use painkillers other than OTC paracetamol which the GP advised me to take on a regular basis, 4 hourly, (for the time being) and this has helped

#6
hi welcome to the forum :smile:i get alot of pains in my adomainal area ,and suffer with alot of back aches ,i hae done for about 4 years now,ive had pd neally 11 years.ive just came out of hosp and was told my back as i new from a while back was from other medical reasons to do with my spine and discs ,but also the surgeon did mention the pains in the groin area and tummy can be related from the nerves from the spine .ino it sounds crazy ,back comes to front pain ,but it is the truth ,i was shown how it was able to do this by scans i had ,and it is very intresting.im not sayin ur pains are comin from ur spine like mine.but explainin simular experince.i was told that back probs are common with pd suffers also and cus i ihave both conditons it was harder to split the 2 for me.:smile:

#7
Welcome to the forum Chorleygrandma, you are now with like minded people. Many, many people here will be able to chat about your problems, it's good to talk so keep coming back.


Radzx

#8
Hello and welcome to the forum chorleygran. Ive had pd for 11 years and like yourself and other suffer with terrible backache and sometimes lower abdominal pain. I'm now beginning to present some of the later stage symptoms, ie, swallowing, I've noticed that occasionally I will choke and it feels like my swallow suddenly goes out of sink, Ive also started drooling, this only happens during the night thankfully but it still bloody horrible!!! Ive had a lot of dystonia and dyskinesias. The dystonia is very painful and Ive had this pain in my left arm for about 6 months now. Ive asked for a Botulinum injection to help release the muscles but simply told, we don't offer that service and we dont know anywhere else that does.So for me the pain continues whilst they fiddle with my meds. Ive waited that long it's now in my left leg. Smacks of Nero fiddling as Rome burns down, methinks!!!

Perhaps us 'long termers' need a thread to swop symptoms that arise after long term levodopa treatment. Where on earth has my looked forward to retirement gone?

I think that's my weekly moan out of the way, but it would be nice to know how many others are experiencing physical difficulties caused by the long term use of the meds and what they are.

Glenchass

#9
I'm new to the forum. My husband (age 75) was diagnosed - or was he- a few weeks ago. As expats living in rural Turkey we can only communicate in Turkish on simple topics, but the neurologist seems to be saying he suspects Parkinson's - and has prescribed Madopar for 3 months. The idea seems to be that if my husbands hand tremor improves after taking the drug, this would strengthen the diagnosis. Reading other people's contributions to the forum and learning more about PD, I can now see that in addition to the tremor in his hands, I have in the past noticed other possible symptoms in my husband - problems with gait, tripping over nothing, needing time to respond to simple questions on occasion, excessive daytime sleepiness - but to the extent that I thought about these things at all, I assumed they were a normal part of becoming older.

We feel we have to think seriously now about selling up here as soon as possible and returning to UK. Our grasp of Turkish probably isn't enough to participate fully in decisions about medication and treatments. There is no support for us here - no PD nurses, specialist physiotherapists etc, no English-speaking self-help support groups. We have no medical insurance and have to pay for consultations, treatments and medication. Managing our house and garden is a full time job for both of us, and will only get harder to cope with as the disease develops.

All in all I feel we're vulnerable, alone and isolated, and we don't fully understand, and therefore I worry about, the neurologists diagnosis and treatment plan.

Any insights or advice on our situation would be welcome.

#10
dear turkeyjane, I really feel for you & your husband. The language problem & lack of support must be daunting. Do you have any relatives or friends in the UK who could ease you back into the nhs?I would suggest taking one step a time & accepting any help offered
With best wishes

#11
Hello to chorleygrandma and turkeyjane. Sorry you have the need to be here, but glad you found the forum. New here myself and find sharing with people going on similar journey can be quite comforting. Best wishes to you and yours, Lin2

#12
Thanks Annebernadette. Sometimes we don't spot the obvious - we have a close relative with close ties to NHS - will call her to talk it thru

#13
Hi. I'm new to the forum. I'm 73 and have been diagonsed for 11 years. I have a question. I changed my drug regime 3 years ago moving from Ropinerole to Stalevo.Now I'm having so many side effects and have not been able to get into bed for 1 year; I sleep in a chair. I would like to return to Ropinerole but have been advised that this would be be very difficult. Has anyone had this poblem and made this transition successfully?

#14
Hello Chorleygran and Turkeyjane (splendid usernames) I am sure you will find the forum helpful, informative and entertaining as well as somewhere to find people ready to lend a sympathetic ear.
Do keep in touch. The more the better. Hope things turn out OK for you both.

#15
Sorry BronzedBrowser. Didn't mean to leave you out. Welcome!

#16
Hi I am new to the forum. I was diagnosed with Parkinsons 3 months ago but I guess I knew some time before that. Just hoped I was wrong. Nothing I can do about it now except to make the best of what I have got.I do have one question.Apparently when I am asleep the tremor in my arm disappears.what I would like to know is why. Any one got any Ideas.

#17
Hi Chessnut and welcome. It is usually the case for a tremor to disappear when you are asleep. Don't really know why but I can make my tremor go when I am deeply relaxed or in a meditative state. It gets worse when I am stressed or anxious. Anyway, stay positive, try to stay cheerful and good luck.
Keep in touch. Chris

#18
Hello chessnut and welcome to the forum
I am the same as Christo. Tremor goes away when I am asleep. If I am relaxed I can control my tremor. But if anxious it is far worse. Also have noticed if I am not feeling very well with a cold , I am really bad. So go to my bed and rest as the shaking is far worse.
You have come to the right place for advice, support and help. good people on here to help.
take care PB

#19
Hi Bronzed Browser, I am 64 years old and I was diagnosed in 2005. I started off on Pramipexole and then had Madopar added, I've had different drugs along the way as my neurologist thought that some might be better for me, but overall the combination has been more of a success with these two. About three years ago, my neurologist thought I should try Stalevo as he thought it might be better for me than Madopar. I couldn't tollerate some side effects, especially bowel problems. I didn't dare go out before dinner-time unless I was sure I had easy access to toilets. I lost my appetite, obviously lost weight and ended up going to see the hospital dietician. I told the neurologist and PDNS I wanted to come off it, but they encouraged me to stay with it longer. After a year I asked them if I could go back to Madopar, which I did and I'm still on the same meds now, although I'm not doing as well now as I need meds for during the night and I'm having problems finding something that aggrees with me. If your doctor changed you from Ropinerole because you were not getting enough benefit from it, he might be happy to try you on something else. You should ask, because nobody should put up with side effects which are too severe.

#20
Thank you all for your replies. I was diagnosed officially in Feb 2003 thia was 18mths after diagnosing myself.but could not getanyone to agree until we insisted we have a second opinion. I cant talk today as am off to start three days of tests for sudden sleep onset. Will logon tonite and let u know more. and CG will be fine.