Hi, I’m not sure if this will be accepted but feel that I need to write. For a while, I’d been aware of stiffness but put it down to lack of exercise. Then I was diagnosed 7 years ago. Well not so much diagnosed, but told very abruptly by a GP that his predecessor’s diagnosis of a trapped nerve was probably Parkinson’s. The appointment with the Neurologist was very difficult because I was crammed into the end of a clinic at an unfamiliar hospital with a doctor who was very rushed. He fired a list of questions at me and didn’t seem to understand that every question signified something else that was going to go wrong with me. At that time, I worked with people with dementia and I had seen how doctors break the news gently. A few years previously, I had been diagnosed with cancer and had immediately been handed to a support nurse. when I left the doctor’s room, I expected this to happen again, but everyone was standing in their coats waiting for me to go. I accepted the diagnosis but feel that I’ve been frozen emotionally for those seven years. Reading the posts in the Forum is helping me to relax and feel that I’m not on my own. Thanks.
Hi @lynlace,
A warm welcome to the forum.
I’m sure you’ll receive some responses from our lovely forum members soon. I’m really sorry that your diagnosis wasn’t delivered with more care and compassion. It’s no wonder that this has affected you emotionally, please know that you can always speak to one of our trusted advisers via our helpline on 0808 800 0303 if you ever need someone to speak to.
We also have an emotional and support section on the Parkinson’s UK website which has a lot of useful information that you may wish to explore - you can find it here, https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.
I hope you enjoy engaging on the forum.
Best wishes,
Reah - Forum Community Manager
Hi lynlace,
I don’t know why I read your post, as I usually head straight for the social and creative section. The heading must have caught my eye. I too was diagnosed about 7 years ago, and like you, the neurologist just told me it was PD, and sent me packing.However I was fortunate to have bee n forewarned by my GP to the likelihood of having PD. Also, I was given an appointment with a Parkinsons nurse, who was kind and helpful. Do you know if there are Parkinsons nurses where you are? If so, they are wonderful. Anyway, I hope things improve for you. And keep visiting the forum. Best wishes. EM
Hi there
I must be so Lucky as my Neurologist is so down to earth and really makes you feel that he cares. He listens to what I have to say. I always come away from an appointment
feeling quite positive.
To answer your question YES the NEurologist’S attitude matters.
Thanks for your reply. There are three PD nurses at my clinic. Two are really nice but the one I was allocated to was very formal and had difficulty even making eye to eye contact. I finally worked out that as I was part of a research study, she spent her time looking at the computer where her colleagues had a technique of humanising the questions and recording the results later. I don’t know if it is common, but the attitude at my clinic seems to be that medication is the be all and end all. They mention exercise but don’t advice on the best type. Until now, I have felt a need for something I could contact to get a reply within a few hours. An appointment in two weeks is a bit far away. However, it looks as though the Forum will fill this need.
hi lynlace i had trouble getting diagnosed because at 44 i was deemed as unlikely to have pd. i went to hospital clinics and staff would walk past me thinking i was there to pick up a parent or other elderly person and were really shocked when told i was the patient.my amazing gp secured me another consultation with the neurologist who had diagnosed me and unbelieveably i was in the waiting room and 2 ladies chatting to me we all had same appointment time same neurologist same original diagnosis…stress when in fact one had MS one had dementia and i had pd. he told me he didnt have time to answer my questions and for the first time since diagnosis, i actually cried like a baby. since then however my care has been second to none at my local hospital so yes the attitude is so important but more important is your determination not to let it dictate how you live your life.things may take more effort more time but put in the effort and enjoy your doing the things you always did take a rest the next day you will find a way keep your chin up xx
Hi Janice
Thank you for your message You must have had a terrible time initially. I’m particularly interested in the bit about the importance of your own attitude, because I suspect I’ve been letting the PD take control. However the contact from the Forum is helping a lot.
Take care
I have an interest in neuroscience and have an interest in neurology as a specialty, but I also consider neurosurgery from time to time. My question is why did you choose neurosurgery over neurology?
Also as an aside. I was wondering how much research relating to robotics is done in both these specialties?
Do you/ did you guys ever call a doctor to ask if you can shadow him? I found several names in a directory from the hospital i volunteer at, but only one NS had an email, so i shot him an email. I still want to get more feelers out there and shadow a few neurologists too. All the other docs only have phone numbers listed.
Hi, I must say my experience was completely different, I was only diagnosed last week. My GP had sent me to the Neurologist as a precaution after I reported a slight tremor in my right hand. The neurologist was quite thorough in his questions and tests, such as they are, and he carefully went through his conclusions and diagnosis. Stage 1 . I have an appointment with the specialist nurse.
A better experience all round i believe,
Hi @KeithS,
A warm welcome to the forum.
I’m glad to hear that you’ve had such a positive experience with your GP. If you need additional support,we have some helpful information for you on the ‘newly diagnosed’ section on our website here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
We also have a team of highly trained advisers via our helpline for additional help and support. You can reach us on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm or you can email at [email protected].
I’m sure you’ll receive more warm welcomes from our members soon, however, do take care in the interim.
Best wishes,
Reah - Forum Community Manager
My neurologist’s ‘bedside manner’ stunk. After the usual tests he seemed almost elated to announce what I had, made some barbed comment about me not being able to smell my own aftershave then said I’ll see you in 6 months!
Luckily the local PD nurse, who I saw a month or so after, was so much better and was very helpful but I feel, as the OP did, that after the initial diagnosis you really need to have the opportunity to ask all the questions you need to sooner rather than later.