Hi
I have just signed up to this online group today hoping that there are people out there that can answer the following ;
I was diagnosed 6 months ago at the age of 52, i have had a busy active few days with my grand children and returned 2 days ago and since last night I feel as if my whole body has been hit by a bus as well as the restless legs being much worse, i am totally wiped out and very down and emotional, does anyone else have these symptoms or is it in my head as i feel because i have been ok close ones think im being over dramatic and think im exaggerating
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You have accurately summarised how I feel every morning.
Like I have run a marathon then gone ten rounds with Anthony Joshua.
It’s the same if I get u in the night
Hubby
He was the ANN64
Im sorry Ann65 im having trouble with my machine I will hopefully respond shortly.
Let me try again ( I spilt tea on my pc and it gave up on me and im trying to type on my wifes notepad ).Firstly welcome to the forum. You are not exaggerating and as said many times here you are not alone.
I will need to pick up your topic up again when I resolve the issues im having with this note pad. In the meantime you try not to worry about being emotional.
Regards
Mal.
I was diagnosed 5 months ago when I, like you, last week had a busy few days with my grandchildren. Being hit by a bus is a very good description of how I’m feeling, along with the feeling of swaying and off balance which up to a couple of weeks ago only happened occasionally now happening all the time. I phoned my nurse who suggested it could be down to the very hot weather we have been experiencing. Sorry I suppose this isn’t much help to you.
My mobile isn’t working very well
Hi @Ann65,
A warm welcome to the forum.
It’s great to see that you’ve already received some great responses from some of our members. To answer your questions, it is completely normal to feel tired and emotional at times, some people go through a range of emotions. However, we have a range of information on our website for newly diagnosed people with Parkinson’s that I’m sure you’ll find useful here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
In addition to the forum, we also have a UK network of friendly Parkinson’s local advisers that are also here for you, there’s more info on how you can access a local adviser here - https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers .
Our helpline is also available to you, if you’d like to speak with a specialist about your worries at the moment. You can call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
Best wishes,
Reah - Forum Community Manager
Thank you Margs for taking the time to answer, very much appreciated.
What a relief to hear from others who understand exactly how we are feeling and to be reassured that this is part of the symptoms of PD.
Kind regards
Ann
Thank you for taking the time to answer its a relief to know that there are others who know exactly how im feeling and that I’m not a hypochondriac as i was beginning to wonder.
It’s a strange feeling when go ing through a spell of fatigue and exhaustion but at the sane time nsomnia whete its just not possible to get mire than a couple of hours sleep.
Ann
Thank you Malc, appreciated.
Anna
Don’t panic ! I was diagnosed last year at 52 and had a lot of the symptoms you are talking about . They’re mostly controlled well by medication but When I have too much adrenaline in my system, for example when at work or when I am tired, my symptoms returned them to take a day or two to recover . It to cross between be hit by A bus and the aftermath of drinking 10 pints of lager! Even when I feel tired and in discomfort I try and do some exercise such as swimming and I find it makes a huge difference.
Keep your chin up.
jim
Hi anne you are not a hypochondriac but you have a degenerative brain condition for which there is no cure. Of course you feel hit by abus. I was diagnosed almost 10 yrs ago aged 44.i felt same as you and many others.it takes a lot of courage strength sheer determination understanding family and good friends to manage this new way of life. But you can and im sure will manage it. Keep in charge. I have good quality of life now but i wont call it by its name cos that would give it importance i dont want it to have. A very emotional condition but plz be kind to yoursrlf. Surround yourself with those you enjoy being with.life can still be good. I hope you are well and managing xx
Hi Ann65,
I was diagnosed 11 months ago at age 50, fatigue is a massive symptom for me so know exactly how you feel. My meds dont seem to help so just trying to learn to live with it. Things I used to take for granted like doing a bit of gardening now are a huge effort. Feel like I’m old before my time.
Hello Anne65,
I am 69,diagnosed Christmas 2017, though pretty sure I have had PD for about 5 years before then. I even asked my doctor if I was a hypochondriac, he laughed when I said I thought I had PD. My symptoms are very like yours, meds do help but I get the swimmy whoozy feeling almost every day, I hate going anywhere on my own,though I do force myself to do it. I HATE HATE HATE this goddamn butt ugly condition.
Hope my little rant will help both you and me take care and don’t despair
Sue xx
What a lovely positive attitude, so helpful.
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Fatigue is a big part of living with PD. This is all pretty new to you. Be patient with yourself and learn how to pace yourself. Sometimes I have to say no to taking care of my grandchildren or I limit the time I’m physically able to. It gets easier to accept the changes of what you are able to do. After eight years of living with PD, I still do most things just a little differently.
Hi Anne65
I was really pleased to read all the contributions to this thread. I was diagnosed in 2014, aged 53, although symptoms had been building up for about five years prior to that. Medication helps me with the outward signs, tremor and movement difficulties, but the real limitation is the immense fatigue that kicks in after even relatively little exertion. So, no, you are very definitely not alone. There is no “normal” with PD, it takes everyone differently so don’t be surprised if it shows up in a way you have not experienced before. Everyone has to learn how to manage their own individual situation. Reading the comments and observations by the amazing people who contribute to this forum always encourages me. Stay positive and trust yourself, you are the only one who knows how you are feeling from the inside.
John
Great post John!
It is the individuality of the disease that makes it seem so hard to find other people who can empathize.
Hubby
Hello,
Does anyone know , witch medicine will best help for only tremor in one hand/arm
We tried prolopa, didnt help, than Merapexine, doesnt help
gr roel