Anyone have motor problems?
Like the inability to bend your foot,toes?
My meds seem to be helping that somewhat but my arm,hand feels the same.
Been on my meds (50 x2) for 10 days was hoping for a bigger improvement.
Trev.
Hey man, I'm 39 with PD.
Keep a notepad close and write down all your questions for the neuro. In addition, when you're in there, record the conversation (whether you tell them or not). There's a lot to digest and you'll benefit from having a playback.
I tried to send you a private message but you're blocking them it seems.
H.
Thanks setup my pms now
Also get your neuro/pd nurse too write to you a copy of what has been discussed so you can refer to it from their point of view of the appointment, you might for instance notice something you've put across that they might of took in a different way, you may also need it in the future when applying for benefits such as esa/pip.
Well I got my letter for the PD nurse with a lot of PD literature and DVDs and a questionnaire about my PD symptoms of what I can do well/can't do well to fill in to take to the appointment on Thursday 5th of May so a week.
But the clinic I have been referred to is "Movement Disorder Nurse Specialist Clinic" is what is on the appointment letter and the nurses are referred as "Nurse Specialists for Movement Disorders".
Is this normal as I thought that I was seeing a PD nurse specialist?
I'd ring the department but it's closed until Monday as they move around hospitals in my area on a daily basis I'd gather and only man the phones when in there main hospital.
Trev.
Hi Trev,
It may be useful to speak to a Parkinson's nurse on our helpline about this? Call on 0808 800 0303 or email us at [email protected].
Kat
http://www.parkinsons.org.uk/nurses/regions/north-east-of-england
Darlington Memorial Hospital
Louise Cochrane, Alison Rose
Cover County Durham and Darlington.
Found this on this website their names are on my paperwork that I was sent today.
Hi Trev
Parkinson's is often referred to as a movement disorder because the most visible symptoms affect movement. In fact the condition is much more complex than that. The key thing is that you have been referred to nurse specialists. Nurse specialists can prescribe meds, they are usually more accessible than neurologists and they can often give you more time. They are wonderful.
Parkinson's is hard to diagnose and in the early stages neuros often use the umbrella term parkinsonism. I was dx 11 years ago at age 39 and it was several months before my case was confirmed as idiopathic parkinson's.
The symptoms you describe could easily be caused by parkinson's and, as others have said, you are on quite a low dose of madopar. It is entirely feasible that your nurse will increase your dose and you may see a marked difference.
The time immediately after a diagnosis is hard and it is easy to be scared & feel isolated. There are several things you can do that should help. As you know there are advisors on the helpline. They can put you in touch with a nurse specialist by phone. They can also put you in touch with a local group and/or another person with parkinsons who can talk to you (that is the peer support service).
I hope that helps and that your nurse appointment goes well
Elegant Fowl
Hi all thought I'd update I went to see the Parkinson's/Movement Disorder Nurse Specialist today.
She had a chat with me about benefits I could be entitled to and asked how my bowels,bladder movements,if I have fell and general questions like that.
Said she'd increase my dose to 100/25 three times a day as 50/12.5 is only a starting dose and is only a symptomatic dose (or systematic lol) to get my brain used to it and avoid side effects but it's good that I've seen some even if minor improvement from it, so my dose increases tomorrow.
She done a small movement test where my eyes had to follow her pen, and move my hands (could only move my left due to the dystonia)... She also seen me walking towards her room in the corridor so probably took a mental note of that.
She said that she would say I have Idiopathic Parkinson's and not the Plus kind after looking at me and what symptoms she wrote down, which has took a huge weight off my shoulders as she will see many patients and is a movement disorder specialist nurse so she should know.
Trev.
Trev,
That is good news. As you say neurologists and nurse specialists deal with a great many people who have Parkinson's and similar. They develop an eye for the symptoms and can spot a parky at a distance just by looking at them.
I hope you get on with the increased dose of meds.
EF
Well I just got my letter from the Movement Disorder Nurse Specialist and a little confused.
It's addressed to my neuro consultant then at the head of the letter it says
Diagnosis: Parkinson's Disease, diagnosed under the care of Dr ********
Medication: Co-Beneldopa 62.5mg tds - to be increased to 125mg tds.
Then it goes into what was dicussed.
Does this mean the Movement Disorder Nurse Specialist has diagnosed me with PD? As my neuro when I seen her when diagnosed 6 weeks ago was Parkinsonism/parkinsonian syndrome (think those mean the same).
I can ring theMovement Disorder Nurse Specialist on Monday but hoping someone understands the wording of the letter.
Can a Movement Disorder Nurse Specialist diagnose me?
Anyone know? Or had the same experience?
Trev,
Looking back a few years to when I was diagnosed I had a similar experience to yours. Parkinson's is hard to diagnose with certainty. My neuro spoke about 'a parkinsonian disorder' for the first few months. I think he assumed it was Parkinson's and treated me accordingly. It was only later that he settled on 'idiopathic parkinson's' as the answer. I expect that is what is happening to you too. I expect that your diagnosis would have been made by your neuro and not by the Nurse Specialist.
I hope you manage to speak to your nurse or neuro and that they are able to clarify things for you.
EF