Hi my name is Janny and I was diagnosed with PD when I was 49 years old I will be 60 in October, nearly 11 years…things have been good so far (well maybe a couple of hiccups along the way) but these last couple of months have been bad to say the least. These sudden changes have been getting me down a lot and my partner suggested that I try joining a Parky forum and maybe talk and hear about the different effects PD has on people. I have already related to a couple of stories that I’ve read so far so thank you for sharing. I go and see a different neurologist next week and I am praying that he can help (il let you know) The thing is although I’m nearing the big 60 in my head I’m still young although believe me my body speaks to me differently than my mind does.
I am glad I took my partner’s advice to join and hope you will forgive any mistakes I make finding my way around.
Kind Regards
Hi @Janny,
A heartfelt welcome to the forum. I’m sorry to hear about the difficulties you’ve been experiencing recently. I can assure you that you’ve come to the right place to find and give advice and reassurance, and I’m sure our lovely community will join me in welcoming you. You are not alone in this.
Also feel free to give us a ring on our 0808 800 0303. Our helpline is free and confidential and our trained advisers, including specialist Parkinson’s nurses, do their best to provide information and advice.
Best wishes,
Nikos
Forum Moderation Team
Hello Janny, I’m in my 11th year so we were probably diagnosed around the same time. I’m sorry to hear you are having a hard time right now and between you, me and however many forum members happen to read this, although I am holding up quite well it can sometimes feel like I’m on borrowed time, how long will my luck last if you like. I therefore can totally emphasise, with your post and really do hope your new neurologist can help. I don’t feel I can offer much to help as I think you do need to get medical advice but I do think you’ve got a very valid point when you talk about the difference between what your head feels and what your body actually does. I am a huge believer in the benefits of positive thinking and have long accepted that Parkinson’s is part of me but doesn’t define me. I also can’t deny however that there will come a time where the balance will tip because it is a chronic condition which at the moment doesn’t have a cure and even though I am doing ok I’m obviously not as good as I was a decade ago. I have also been aware that around ten years on medication is where the implications of long term medication can start to be felt which gives rise to more complex routine which I suspect we are both beginning to see. I don’t have the answers except to tell you I am determined to stay positive and whatever the future may hold flatly refused to be defined by my Parkinson’s. I will always be Tot first who happens to have Parkinson’s, in my head therefore it will always have second place never first and I believe that will give me the strength to go on living with Parkie and have a quality of life that is worth the increasing effort that will take. That’s not pie in the sky talk. I know what pain and frustration can do to a person and bring them to the depths of despair, I know what impact the often intended but nonetheless hurtful comments of others can make and how utterly exhausting it can be to live with this relentless condition that never lets you forget it’s there and believe me I have my moments, but equally I believe the brain is a powerful tool which can work for you as much as Parkinson’s attempts to turn it into your enemy. That’s my way, I really do hope you can find something equally strong to keep you going during your current difficult period of readjustment. Good luck with your appointment, and hang on in there you’re better than anything Parkinson’s can throw at you. You may lose a battle but you haven’t lost the war. Take care
Tot
Hi Tot
Thank you so very much for your uplifting message of advice it actually brought tears to my eyes and has made me feel so much better within myself.
Yes I know exactly what you mean about thinking you are living on borrowed time as on my worst off days I think exactly the same but truth be told I’m not ready to give up the ghost just yet and no matter what comes my way I know I will fight it, I do try to remain positive but sometimes I admit I get overwhelmed by it all. It’s the pain and frustration of not being able to plan, I won’t drive because of my right arm (now also my left arm sometimes) and also my legs which I don’t know what’s happening with them. On a good day I can conquer the world but these last couple of months I’ve cried more than I’ve did all through the 11 years of PD and find also that I’m a bit of a “narky parky” to my partner (who has been an absolute rock through this)
I go to see a young and up coming neurologist who thinks out of the box next week and I am praying he can help me. I have excellent relationships with my Parky team and they do very well by me (I personally think my meds need overhauled) but we will see. I accept that I’ve got PD and like you I don’t let it define me in any shape or form and although it’s a terrible condition that I wouldn’t wish on my worst enemy I always try and remind myself that I could be a lot worse.
As you say Tot I may have lost a battle or two with “Mr Parky” but I’ve not lost the war or as I say “It ain’t over till the fat lady sings”
Thank you for your lovely message…you have set me up for today and you take care of yourself and il let you know how I get on…it’s next Wednesday I go.
Kind Regards
Hi @Janny, Welcome to the forum and hope you are learning a lot through reading through to topics especially in the introductions category. The main thing you absorb is that we’re all different. A tip to help you through your appointment next week is to write down everything you want to ask your Neurologist so that you get all your answers, it is so easy to forget something you may think is important. @Tot as always has given you the benefit of her wisdom. Looking forward to see how you get on. Have yourself a great weekend and think on the positive in everything you do. Stay safe and take care.
Les
Thank you so much @cruisecontroller I appreciate your advice and will definitely write things down. You have a great weekend too.
Kind Regards
What a lovely reply to my post Janny thank you. I’m glad it helped. Never worry about the crying if all else fails use the science ie crying is good because it gets rid of a load of toxins! Pleased to see you have taken on board cruise controller’s suggestion of writing your questions down especially important I think when meeting someone new. Will be thinking of you next week. Tot
Hello Janny
Hope your appointment goes well, let us know how you got on when you get a mo.
Tot
Thank you Tot I will and I hope you have a lovely day. The sun is shining through my window and I hope it’s shining where you are.
Kind Regards
There is no big 60 - well not from the perspective of a 65 year old anyway! You speak of pain in your right arm and sometimes your left - have you tried any alternative therapies such as acupuncture? Good luck with your new neurologist. I agree with Tot’s comments about positive thinking even when I’m feeling positively awful. My observations of my fellow sufferers within my local branch indicates a physical sea change at around 12/13 years, probably due to.med build ups. Another thing that I’ve observed is that when one drug ceases to work effecively, the new one is added to the list rather than the old one removed so the cocktail increases - not the best idea to my way of thinking. Surely it makes more sense to stop the one that isn’t working well anymore? My suggestion is to keep going, lots of taking part in research projects to build up an accurate picture of JANNY and not just another PwP. We all cry sometimes but my tears are only ever of frustration and then my brain takes over to find a way around the problem causing the frustration. My definition of PwPs is People with Passion. Good luck.
Good morning all. I don’t know whether I should make this a new post or write it here so forgive me if I am wrong by just writing it here. I met my new neurologist yesterday and I came away feeling so much better. He is very confident that with a change in my meds that I will soon feel much better. I hope so.
He seems to think that I have been under medicated for years because when I was originally diagnosed I was put on Ropinirole (Requip) I was on this medication for almost two years when I started to get very bad side effects (this was one of the hiccups I got a long the way that I mentioned in my first post) Long story short I was taken off these meds and put on to Madopar, four capsules four times a day (100mg/25mg) and Sinemet CR {50mg/200mg) one tablet in the morning and one at night and up until late last year I was actually doing fine then I noticed small things creeping in and was told to take Entacapone 200mg three times daily and although it worked initially the effects soon began to wear off…fast forward to 2021 and I can honestly say that this is the worst I’ve ever felt (I won’t bore you with details)
The neurologist told me that in his opinion I should never have been on Sinemet CR first thing in the morning and has advised that I drop the morning SInemet CR and continue taking my four Madopar (100mg/50mg) but include four Madopar 50mg/12.5mg, he thinks that due to the bad side effects of taking the Ropinirole(Requip) early on in my diagnosis other Doctors were scared to put up my meds and hence thats why I was given Enticapone.
Only time will tell if he is right, he has to write to my GP and then I will get started. I will let you know how things go but when I really thought about it apart from the change to Madopar from Ropinirole I have been on the same meds for years so perhaps he is right although I did think myself that my meds needed an overhaul. I am sorry if I have went on about this but fingers crossed it all works out.
Kind Regards
Hi Janny, very pleased to hear you had such a positive appointment yesterday and really do hope the changed meds regime helps. It was a little disconcerting however when you wrote that he thought your previous doctors were scared to put your meds up; if they are scared heaven help those of us who have and live with Parkinson’s!
Take care
Tot
Yes I know what you mean Tot, he was a young man very to the point, my partner who was allowed in with me liked him and thought he was direct and focused on getting the job done. He did say that if this didn’t work their were other avenues that we could go down. Time will tell if it all works.
Kind Regards
Hi everyone. I’m new to this forum and I hope you will bear with me.
My contribution is the use of HUMOUR fighting back. This is a risky business as one man’s /woman’s bit of fun is absolute nonsense to another. Living with PD I’m tough enough to handle rejection so bring it on.
banjo-boy
Hello Janny. You are NOT alone! Please do not be discouraged. It is through our collective efforts that we will win!
My situation is similar to yours; now trying to make contact with teachers on this forum to explore options for reasonable adjustment.
Hi, if and when you set up a group can you please add me to your list? Thank you 
Hello Janny just wondering how things are going for you now. Do hope you are ok
Tot
Hi Tot
What a rollercoaster of a journey but I think I can say with confidence that the medication is working. Never in my wildest dreams did I think things could get so bad when I was “off” if I thought things were bad before all the changes to my meds well I really got my eyes opened to how bad a condition this is…I wouldn’t wish it on anyone.
Having been diagnosed for eleven years I can say that after a couple of hiccups while on Requip (ropinirole) back in the early days I have been very lucky with my fight against Mr Parky in fact it was just lately that I got bad “off” times and that’s when my neurologist decided to shake things up medication wise.
One minute I was ok I could move and do things the next I just couldn’t move I couldn’t even lift my arms up to wash my hair in the shower I felt like my whole body was rattling (it wasn’t) and then the depression came…one morning it took me an hour and twenty minutes to get dressed the tears of frustration were flowing big time that morning…I was told that I had to give the new regime of meds four to six weeks to kick in, half way through week two I was on the phone…they made changes and things settled down but not for long as the Dyskinesia came next…my whole body rocked and my head was bobbing (my partner said that he felt dizzy watching me) I am a carer for my brother and I was toiling looking after him I really was…more phone calls, more tweaks to my meds…butI I think I’m on my way back now…it’s not perfect but I can cope with my life and I am feeling confident enough to drive.
Im not one for giving into things I like to think I am a fighter and try and make the most of my life and I don’t feel sorry for myself but if I’m being truthful there was days when I thought I’m going to loose as dramatic as this sounds. I could go on and on about this but I won’t bore you anymore. I’m just so glad to be back to “normal” whatever “normal” is lol.
I was going to post the outcome at some point Tot but thank you for taking the time to ask.
How are you? I hope everything is good with you
My apologies if I’ve banged on too much.
Kind Regards
Janny
Thank you for your reply Bluetrainers. I hope everything is good. Keep in touch as to how things are going for you, I am confident that is me back now that my meds have been fixed.
Kind Regards
Janny
Delighted to hear you have got you back long may it be so.
I’m doing ok thanks
Tot