Hello. I was diagnosed with Parkinson’s in 2016 Since then I’ve spent a lot of time acting like an ostrich with my head in the sand hoping it will all go away. I try to look after my self and keep healthy etc but I have quite a busy job (that I love) and two grown up children who live close by with their partners and my first grandchild (now 7 months). I got divorced about 10 years ago and have met a lovely man who lives in Manchester- so we haven’t seen a lot of each other recently apart from first lock down.
My symptoms have been getting worse recently and my Parkinson’s nurse changed my medication. I take rasagaline and ropinerol every morning and I take sinemet at the same time as the other tablets in the morning and then twice more during the day. It used to be just one a day but was recently increased to 1 1/2 and now 2 tablets each time together with a new prolonged release sinen when I go to bed. I’ve also just started hrt.
And now a week into the new tablets I feel dreadful! My tremor is better but I’m all over the place emotionally and my brain is so jumbled im finding it hard to talk. My mouth gets so dry as well. I keep dropping light things such as pencils and pieces of paper and my phone- they just slip out of my hand before I’m even aware of it.
Obviously my sleep hasn’t improved and I’m sitting here crying as I write this feeling incredibly sorry for myself.
I did call and email my Parkinson’s nurse on Thursday but now don’t really expect to hear until Tuesday- my go has also sent them an urgent message to contact me.
Does anybody else ever feel like this - could it be the increase in tablets ? I try to stay positive and I smelt my shampoo today for the first time in ages and I’m focusing on that at the moment. I just hate having Parkinson’s at times like this and feel quite alone even with my lovely family and friends.
Sorry it’s such a miserable post I’m usually much more upbeat but I wanted to hear people’s opinion.
Thank in advance.
I see you posted an hour ago and on the off chance you may see this quite quickly am dropping a quick line. It’s 2.00 am and typing poor so can’t do proper reply but wanted to say hang on in there, I’m with you in spirit, propping you up just now. Hope you get some sleep - that and daylight will hopefully help. Sending a big hug.
Tot
Thank you Tot. I had almost 4 hours! I know this will pass but it’s horrible when it’s happening. Think I need to get up and start cleaning and see how the day goes.
Good for you. Nothing wrong in feeling a bit sorry for yourself once in a while and it’s always hardest in the wee small hours. Happy Easter to you, stay safe and warm!!
Tot
I wanted to take a moment and welcome you to the community. I’m sorry to hear you’ve been having a difficult time recently - both with your symptoms and the medication changes that have resulted. It’s very frustrating, to feel like you’ve made progress in one area, just to have something else come up.
These things do happen, but you do not have to face them alone. We have some fantastic supportive members, like @Tot, who will make you feel at home here and will remind you that this is just a bump in the road and you will get past this. Please do feel safe sharing here!
You’ve already reached out to your GP and Parkinson’s nurse, which is a great start. They will be able to help you find the best way forward, whether it’s another medication adjustment or something to help you through the transition period, until your body grows accustomed to the different dosages.
You are also more than welcome to reach out to one of our advisers on the helpline as well. It doesn’t matter if you need advice, someone to help you stay positive, or even just someone to share that lovely shampoo smell with - they are there for you, just like we are here. Give them a ring on 0808 800 0303 whenever you feel like reaching out.
Thank you Joy. I’m trying to hold on til Tuesday. I’m very lucky to have some very supportive friends who I reached out to today - they responded with tea and chocolate! It’s just a shame that this has happened over a long weekend when I can’t get hold of anyone. Convinced it’s just the side effects so fingers crossed I can get it sorted sooner than later - just need to stop crying when I talk to anyone…
Lolypoly have a read of this may help you not mind crying so much.
You’re doing great by the way only one more day and you would have managed the weekend
Tot
Poor you. You’re really having a rough time of it and having to cope on your own is a bummer. Firstly, hang on in there. My first thought on reading your post was over medication - it’s quite common. You go to see a Consultant or Nurse, they listen to your symptoms and ramp up the meds!!! A friend of mine became so bad she went out and bought a mobility scooter to get around on u til they reduced her meds and she’s back to walking normally again. I am on Ropinirole (14mg) in the morning with Madopar 100/25 and 50/12.5 4 times a day. I was also on a modified release Madopar at bedtime but forgot to take it a couple of nights (you’d think after 10 years I’d remember!) and noticed that I slept better on those nights. So I just stopped taking the modified release and have never looked back. I now sleep for around 6 hours instead of 2 and feel absolutely fine otherwise. I sometimes forget my afternoon pills and, again, feel great without them, I haven’t seen my Consultant for about 2 years but as long as I feel okay I’m not bothered. I think the best medication for PD is positive thinking. I always tell people I have Parkinson’s but Parkinson’s doesn’t have me.
Another thing I did was to start a coffee group with 5 or 6 other ladies of my age with Parkinson’s. We only meet up every two or three months but it’s great to chat about things together. It’s so easy to hang all your ailments on the Parkinson’s hook, but in talking to others you sometimes find it’s not the cause of that particular problem after all.
Stay safe, stay strong and best wishes for the future
Jane
