HI BRENDA...HOPE YOU HAVE HAD A GOOD DAY, DESPITE THE WEATHER! ROLL ON SPRING AY?
I HAVE SENT FOR THE BOOK, THANKYOU FOR LETTING ME KNOW ABOUT IT, AND IT SHOULD BE HERE WITHIN A COUPLE OF WEEKS. I ENJOYED MY WEEKLY LINE DANCE CLASS THIS MORNING AND THEN BATTLED THE SUPERMARKET.....TODAY I SEEM TO HAVE HAD A LOT OF ENERGY AND JUST WANTED TO BE "DOING", DO YOU FIND THAT? IT IS LIKE I HAVE BEEN WOUND UP!! BUT THE MORE I DO THE MORE I TREMBLE...LIKE AN ADRENALINE RUSH. THE NURSE IS CONTACTING ME TOMORROW TO DISCUSS MEDS...THOUGH AT THE MOMENT I WOULD RATHER LEAVE THINGS AS THEY ARE.
GLAD TO HEAR YOU ARE SLEEPING WELL...YOU ARE SO RIGHT, IT REALLY HELPS. I'M SURE LIKE MYSELF THAT BEFORE YOU WERE TAKING PD MEDS YOUR SLEEPING WAS ERATIC? AND THE RESTLESS LEGS WERE A NIGHTMARE.
well I had a bad crampy night, also wind howling, but went to salvstion army coffee morning, then to mums for her birthday with our son and family.
I am not on any meds yet, concerned re side effects , tried levadopa , really bad. See pd nurse in march. How are you with sickness and sleepiness, which meds are you on ?
another question, did you say you have a wii machine ? What exercises do you do on it?
on a good day, like you I rush about all morning !
I find supermarket shop very hard, don't walk right with trolley then cramp again ! So am doing some on line shopping.
Hi Brenda....I am sorry i couldn't reply yesterday....i could not log in or get into my account.
Thank you for letting me know about the book and dvd i will find that a great help.
Pleased that you enjoyed your Mums Birthday with your family, it is lovely to all get together like that and our Mums really appreciate it don't they? We were going to take my old Mum out yesterday but the steering on our car packed up.....its now in garage for a week and we were going on holiday this morning also. Is that what they call S*** law!? (watch this space)!!
I started on requipXL when i was diagnosed in Feb last year it is a slow release and i take it at night as it made me feel heady and woozy when i tried it in the mornings, i eventually increased to 14mgs. Just before Christmas i started Co-Beneldopa (Madapar) 12.5/50 three times a day and decreased the requipxl to 10mgs. I felt a bit unwell to begin with and i think it was reducing the Requip. I then got a chest infection and was on a.biotics which didn't help. I rang my PD nurse and she has increased my Co-beneldopa to double, but everything did settle down after a few weeks and so i am staying on the 3 a day for the time being and i told her i would increase when i feel the need and she is happy for me to do that.
I find the Levadopa has helped with the heavy arms and legs and i have more energy, also the neck spasms and tightness. The trembling is generally not too bad though if i am anxious, hungry or cold it gets worse. Sometimes like you, i have lots of energy (like being plugged in) other times i feel very tired and have been known to almost drop off on the bus!
My appetite has increased a lot unfortuntely and i feel hungry a lot of the time, i guess that is the meds.
Just heard that the car is in the garage for a week!!! so Mr Dolly and i not happy (i guess i will start the HIPPY HIPPY SHAKE now as the stress levels are increasing)
I hope you go on well Brenda....keep in touch and let me know how you are doing
Hi Brenda...You are welcome to some of my extra few pounds if you like? honestly i felt like a sack done up in the middle whilst we were away and i tried to squeeze into dresses......trouble is the food is so good and you get 3 full meals a day and the puds are just saying "eat me" and i always do as i am told!!!!! consequently the big hold in knicks were a must so i guess despite always feeling peckish i must find the willpower to say no. I am sorry you have been nauseas, did you say that you have tried omeprazole from the GP or Domperidone for it?
We finally got the car back today, it has been a pain with the company and i had words with the manager today as despite us having a 3 year cover they said last Monday that they didn't have any cars to lend us. Finally i went with our friends plus a bit of luggage but they didn't have room for my Husband as they had their wheelchair in the back....so Mr Dolly went by train and bus...bless him.
How did you get on at the AGM today? did you meet many people and was it helpful? it is so good to chat with folk who understand how we feel isn't it? that is what i like about this forum too.
Roll on spring, some warmth and sunshine will do us all good.
Great idea the Wii machine especially for balance and co-ordination.
have not asked re anti nauses drugs, I have lots of problems taking tablets.
parkinsons agm was good, well supported, friendly , got info to bring home and talk to pd nurse . Stiff today , too much sitting at agm !
Pleased you got your car back, you would miss it. Mum at 87 is giving up driving, less stress for us as she will not have her eyes tested and is erratic!
Nice day today if windy , husband and I had a small hobble, go to seaside wed, check our caravan.
went back to see the consultant yesterday and he looked again at the shaking in both my hands asked if I had. Any pains and made note of them again pain in my hands backs of my legs my right leg going numb when I walk kneeling down & getting back up again asked if the propranolol had reduced the shaking & it has although not totally
so I asked him if he was treating for Parkinsons he replied their is no sign of parkinsons I'm treating you for essential tremors I'll see you in six months we will see how you progress and if things change I will tell you so although I am relieved to hear that it's not Parkinsons I still have this nagging doubt in my head about his diagnoses and why hasn't he helped.to tackle the pains I'm having
so I guess that brings you up to date I'll just have to wait and see where we go from hear
many thanks to all of you for your posts I've found them very helpful
psrkinsons nurse great yesterdsy, very well informed. Did not force me on medication yet. Referred me for physio ,also occupational therapist for rails and walker for home. Lots more info for bedtime reading!
Tips eg how to get through doorways ! Gave me diet sheet to put on weight!
Also neuro physio man came , says exercises will help to retrain brain.
Had one crampy night, too much sitting , last 2 nights better.
giving cousin carol b day tea and cske, she was 70 this week.
sunny here today, warm in sun. Soon be opening our caravan up
Hi Brenda....If you want any tips on how to gain weight then i'm your girl! seriously i am trying to get mine down i just have such an appetite since being on the Madopar well thats my excuse)All sounds positive news from your Nurse, that is great she sounds very understanding and thorough to. Pleased to hear you are managing without meds....you are doing all the right things by the sounds of it...well done. Your cousin had great weather today for her Birthday it has been fab here in the South too and took a little stroll on the pier and an ice cream (in March) whatever next? It is definitely coming up to caravan weather....so enjoy, we used to go to a small caravan park near Seaton Devon it was a static van and we had lots of happy holidays there...in fact i rather fancy doing that again now you have given me the idea. Cheers Brenda
What a relief that you don`t seem to have Parkinsons, Although essential tremor is still an unpleasant condition to have I don`t believe it is progressive., I am sorry that you still have doubts over your diagnosis, You mentioned that you have tremors in both hands, The tremor in Parkinsons is classic in that it always starts on one side and then spreads to the other side in due course, This maybe why he is not convinced of the diagnosis of Parkinsons. Do you have any of the other symptoms for example, no arm swing when you walk on one side or stiffness and rigidity? If you do and you are worried you are perfectly within your rights to get a second opinion. Maybe in six months when you go back he may try you a dopamine agonist because if it is parkinsons it will cause an improvement, If not Parkinsons it has no affect, Sometimes they do this if it is a very unclear diagnisis. I hope you keep well and try not to dwell on things too much.
thank you for your reply I do have a lot of stiffness in both my hands and thumbs which makes griping things very painful and in my legs . When I walk my. Right leg goes numb and I have to stand a while and try to take the wait of it so I can continue walking still that said I'll wait and see how things develop leading into my next appointment with him and it may be a good idea to keep some form of diary if things do start to change
for the time being I'm just grateful to have the tremors sorted out that's made things a bit more bearable
I have decided that I would like to stay a member of this forum and support Parkinson's in any way I can
Although you haven`t had a definite diagnosis you certainly have what they call Parkinsonian symptoms ie: the stiffness etc, I think its important to carry on being a member of this forum, You need support especially while things seem so up in the air for you, I think you will benefit from being here and its important that we are all able to discuss things together and share experiences.
Sorry, but it upsets me that others are going through the same hell as I did. Don't get me wrong, I don't blame the Doctors it is the NICE guidelines that are at fault. There must be some sort of professional help offered (e.g. counselling) during the wait for a diagnosis. To be unaware of the effect of telling someone they "might" have Parkinson's and offer no emotional help is deeply confusing. Imagine if you were suddenly handed a ticking time bomb and you didn't know when it would be defused (you don't have Parkinson's) or how powerful the explosion will be (you have Parkinson's).
Yes I agree with you. It took well over a year for me to be diagnosed, I had to be referred to a second doctor as the first wasn`t sure. It was a living hell, I was just left in the wilderness, I had no one I could talk to about it.I couldnt access the local parkinsons nurse for advice because you have to be in the club of being diagnosed to be able to speak to her.
What they need is a service that provides support and advice and education of what to expect while you are waiting. At least then the waiting may not be so hard. The waiting drove me crazy and it is wrong, really wrong.
It takes so long to diagnose this condition in the early stages, Its not like having a simple blood test and having to wait a few days. I do think its appalling how we are made to wait to see if we have a progressive brain disease for months on end with no help, advice and support. It is in fact downright cruel.
you can see how & why the actual diagnosis takes so long when there are so many things that mimic Parkinson like in my case essential tremors or that's what they say it is .And I'm still not 100% happy with that decision Although he has asked if i have any aches or pains and i have told him twice now he still hasn't done anything to improve them and thinking on i told him the first time round that my cense of smell had gone off and i have recently stopped smoking i would have thought if any thing was going to improve your cense of smell it would be that it has in the past when i have stopped that's the first thing that you get back
But i am sure i am not the only one that has been left hanging like this and i agree its an horrible thing to have to go through all the waiting
For me i am pleased its not Parkinsons but why do i keep thinking that lurking around the corner is a different outcome these are the issues their should be more support with its good their are forums and Website like parkinsons uk where you can get a straight forward & honest answer to a question
All sounds positive news from your Nurse, that is great she sounds very understanding and thorough to. Pleased to hear you are managing without meds....you are doing all the right things by the sounds of it...well done. Your cousin had great weather today for her Birthday it has been fab here in the South too and took a little stroll on the pier and an ice cream (in March) whatever next? It is definitely coming up to caravan weather....so enjoy, we used to go to a small caravan park near Seaton Devon it was a static van and we had lots of happy holidays there...in fact i rather fancy doing that again now you have given me the idea. Cheers Brenda