I was diagnosed with Parkinson’s on June the 2nd this year.
It was actually a relief, as I had gone from a bubbly, confident person to someone who didn’t want to leave the house, questioned everything I did and quite honestly thought I was having a breakdown. I even got off a plane before takeoff, my anxiety was through the roof.
The depression was overwhelming and consuming.
The diagnosis, although not what I wanted to hear put this into perspective. My happy drug was depleting!
I was immediately prescribed Sinemet, and referred to the Parkinson Nurses. What a breath of fresh air!
I had so many questions, all answered and there was no time limit to the consultation. My main concern was taking the drug, I did not want it and still feel this way, I think.
My tremor is right sided dominant, my left arm and my face tremor but in the last week the tremor has started in my leg.
I don’t care about the external tremor, peoples perceptions are their concerns not mine. What I am suffering from is the internal tremor. I can only describe it as ‘wobbling jelly.’
Sleep…cant remember not waking up at least 5 times a night!
The positives are few, my main one is my family. My husband and children still treat me as Annie and Mum. Parkinson’s is a condition I have.
Never thought I would be writhing on a forum! Never thought I would have Parkinson’s…
If anyone reading this has any advice on sleeping or the wobbling jelly feeling please let me know!
Thank you and take care.
Hi AMU, welcome to the forum. Very sorry to hear about your diagnosis, but glad to hear you’ve had a positive experience with your Parkinson’s nurse, and that your family are being so supportive.
We’ve got lots of information on our website about many different Parkinson’s symptoms, including motor symptoms like dizziness: https://www.parkinsons.org.uk/information-and-support/motor-symptoms-parkinsons, as well as non-motor symptoms like sleep disturbance: https://www.parkinsons.org.uk/information-and-support/non-motor-symptoms-parkinsons.
You might also want to try contacting our Helpline, as they’re able to offer advice on a wide range of issues affecting Parkinson’s patients. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
I can’t say a great deal to help as I don’t have tremor or the jelly wobbles! Hopefully someone will come through who can help with that. I do have sleep problems but I doubt my method of managing it will suit as you have a family but for what it’s worth… Like all the challenges Parky throws at me I try hard not to mind which just causes frustration and have long since given up lying in bed waiting for sleep that wasn’t going to happen so I get up and do something what depends on how I am moving at the time. It works for me. What I really wanted to do was commend you for your approach given you were so recently diagnosed. I entirely agree that if folk have problems with any aspect of my condition that’s their issue not mine but if something is said in my hearing I do make sure they know about the PD. I use phrases like my Parkinson’s is using the slow lane this morning, my feet will move when they are ready to move, Parkinson’s doesn’t provide an over ride button and I know, I get fed up with my Parkinson’s too (useful when someone is huffing and puffing behind me in a queue!) Good to hear your family are treating you as you and that the diagnosis has brought relief from that very dark period. I hope you are able to keep well and gain strength from your positive approach so you can cope with the challenges ahead. My best wishes to you and your family, the forum will be here if and as you need.
Thank you so much,
I love your approach to peoples perceptions, I will remember them when the time comes!
My family are not that young, they are 33, 31 and 26. They have all left home but are never the less so supportive. My eldest two are always researching and my youngest who is a nurse is very practical and pragmatic.
I am still working and return on Monday after the six weeks school holiday. I am really looking forward to it but also with trepidation as I am slowing down and get really tired. The head has buried his head in the sand and does not know what to say. The children however are amazing, they ask the question “Why are you shaking Miss?” You give them the answer and they skip off. Adult could learn a thing or two from them.
Again Thank you…I don’t feel so alone now.
Thank you for your lovely reply, glad it helped a bit and no you are not on your own, I have had my diagnosis almost 10 years and am not doing too badly all things considered. My favourite saying is that I have Parkinson’s, it doesn’t have me. Not suggesting for one minute it is easy, but you can have a life worth living. Best wishes.
PS in my opinion you have an amazing opportunity to show your head just how good the children are about your Parkinson’s, strikes me he could learn a lot from them. Please make sure you read up on employment rights there’s lots on the website, so you can get the support to which you are entitled and if not in a union may be worth considering so there is another support if your head continues to keep his head buried.