I’m currently waiting for a consultant to look at me, and there’s the potential of a Parkinson’s diagnosis. I’m a professional musician. Or I used to be before The Pandemic, and my musical future is now in doubt -
I’m in my 50s and quite fit, but have had an arm tremor since last year, and a couple of months ago my hand stopped working - it just seized up one day and I can’t close or open my fingers more than a slight extent, and there’s this cramping a few times a day. Effectively I only have the use of one hand.
It took 5 weeks to get a 10min phone chat with my GP, but then I was quickly examined in person, and now I have an ‘urgent’ consultant appointment with a Neurologist in 4 months time.
Meanwhile it’s pretty unbearable. My other hand seems to have the beginning of something going on with it.
My GP said it looks like Parkinson’s, but I don’t have general slowness, and I’m seriously thinking about looking into a private referral to a neurologist if that could be any faster than four months. But I’m nervous of the costs expanding into scans/whatever expensive extras.
Hi Lemon,
Welcome to our lovely forum community. You are likely to soon hear from our members who are always full of valuable experience, advice, and support. If your diagnosis does turn out to be Parkinson’s, we have a wealth of knowledge on our website at Parkinsons.org.uk, from research news to personal blogs to archived forum threads, all loaded with helpful information. We also have a free and confidential helpline, at 0808 800 0303, staffed with friendly and massively helpful advisers armed with answers to an epic array of questions.
We wish you the best of luck on your journey,
Jason
Mod Team
Hello Lemon, welcome to the forum. Can reiterate Jason’s comments contact Parkinson’s uK website and helpline they are excellent. Personally I’d say 4 months, whilst infuriating, isn’t a very long time to wait to see a neurologist, given the current Covid climate. Many people diagnosed with Parkinson’s have had to wait a year or more to see a neurologist and often more than once to obtain a diagnosis. Obv if you can afford it then a private neurology appointment might give you quicker answers. Either way using Parkinson’s U.K. website and information will definitely help arm you with the questions you need to ask to get the most from your consultations. All the very best Jane
Hi @Lemon Welcome. The thing to remember with Parkinsons is that we are all different, there’s no set thing which defines what we have. As we progress with the Disease we get to notice subtle changes in our wellbeing, we fall, we have speech impediments, we dribble, we have memory lapses and many other things besides. You will learn by reading others experiences, how they cope, the thing is to be positive in your outlook and sometimes take the mickey out of yourself and have a laugh with it. I see you’ve already contributed to another topic I am involved in so you’re getting your feet nicely under the table, we are a friendly bunch as you’ve gathered already !! Take care and stay safe.
I haven’t used a itforum before. I was diagnosed with Parkiinsons 7 years ago.For the first 6 months I was taking Repinerole - and it didn;t do anything for the tremor,I draw ;and paint, and I was in dispair about getting back to working in the studio.I aked to be put on Leva Dopa, and was drawing within two weeks. Although I hate taking a lot of strong medication, it has enabled me to pickup my life again to some extent
Hi Ruth,
Welcome to the forum! It’s a lovely and supportive community of PWP, carers, and family, all with unique gifts to share. We’d like to make sure you’re aware of the wealth of data on our website at Parkinsons.org.uk as well as our free and confidential helpline at 0808 800 0303, and it sounds like you have your own wealth of experience and knowledge to share, so please don’t be shy. And have a look around – you’ll find you’re among fellow artists of myriad abilities refusing to let Parkinson’s get in the way of their talents.
Best wishes and warmest welcome,
Jason
Mod Team
Hi my name is susan I was diagnosed with Parkinson’s eight years ago and have been fortunate not to have had severe symptoms. I walk every day and try to be as mobile as possible. Recently I have had a permanent headache which is made worse using a screen anyone else had this problem
Hi Supersue, and welcome to the forum.
First off, great name! Just as a moderator of this forum I have seen more superheroics from PWP than I can count. Please feel welcome here among this gifted and wise forum family, some of whom you will hear from soon. Headaches are unfortunately a common Parkinson’s-related symptom, and can often be a result of medications. We urge you to let your GP and Parkinson’s team know as soon as possible so they can examine this. We also found some data on our website that may be of some help, and we would suggest having a search for ‘headaches’ as it will pull up loads of info, including past forum discussions. Added to that, we have a free and confidential helpline staffed with trained advisers who are empowered to help in so many ways, not limited to medical questions or concerns. You can reach them at 0808 800 0303. They can help you find mental health resources, local activities/groups, and just be an ear if you need someone to chat with.
We hope you find some relief from your headaches soon, and again, a warm welcome and best wishes,
Jason
Mod Team
I’m really sorry to hear about your recent medical emergency; how are you feeling today? I’m glad you feel relieved with your diagnosis - many newly diagnosis people have expressed the same feelings and I’m sure there are others on the forum that can relate to you.
With that being said, finding out you have Parkinson’s affects everyone differently and some people go through a range of emotions. We’ve got a lot of information and support on the Parkinson’s UK website which I’m sure you’ll find helpful. Please visit our website here: Newly diagnosed with Parkinson's | Parkinson's UK
Madopar is really helping with my shaking already, but I’m not hopeful that my hand(s) will recover much. My emergency was a sudden (& massive) Postural Instability, along with some additional loss of use of bits of my body (which GP thought might be a stroke) & it was a relief to see a consultant neurologist in A&E. The Madopar doesn’t seem to be touching the instability though and I’m currently housebound and trying to move from room to room holding on to things, which is tricky as my hands don’t work.
I’m booked for further tests, so that might bring a new or additional diagnosis. Scary how this has all appeared in such a short time - I was fine a year ago. (Or was I? - now I wonder if there had been signs of something for years). I’ve just returned my driving licence to DVLA.
Internet searches for “Postural Instability” bring results that tell me this might be a ‘late-stage’ thing, or a different (& horrid+) diagnosis, or just unlucky.
@Lemon I have been suffering with postural instability for almost 6 months. It was about a year ago I realised something was wrong but on the whole managed to hide it as I was convinced it would go away. Yesterday I fell over in IKEA and made a quick exit. You are not alone on that score. I plan to call my neurologist on Monday as the balance issues have got worse in recent weeks. It’s frustrating having to walk with a stick but it keeps me upright if I begin to go!!! Since the DatScan confirmed PD, I think my body has stopped fighting it all. Sinemet has definitely helped with the rigidity though. It’s all new to me though but I have been alarmed at how quickly this has progressed from nothing noticeable to really struggling (14-18 months).
