I haven't had any luck getting hold of the guy from the Bury Group yet but have just sent him an email and also left a message for him to contact me so hopefully he will get back to me at some stage. Here are the details that I have for the group that are on this site as follows:
Suffolk West Active Parkinsons Group
Risbygate sports club
Meet: every 3rd Friday of the month
Time: 7.30
Ian McKee, Branch & Volunteer Support Officer
Tel: 0844 225 3614
bvso.easternnorth.org.uk
Let me know if you have any luck as by my reckoning the next meeting should be this Friday.
Hi everyone,so ive been feeling ontop of the world for the last two months with strangley no symptoms at all ??
its like im me old self again back to the weights and healthy eating my right arm has strength again all very strange ??
So i have my six monthly neurologist appointment with the £60,000 a year "how are you steve"?? "can you walk from on side of the room to the other"? "im afraid this new spurt of energy wont last for long" Mr doom and Gloom NEXT PATIENT PLEASE AFTER 2 MINS 53 SECS of my time so called expert. her have some more pills and you can rattle when you walk!!
so after this Motivational visit to the neur get paid to much ologist i head for thr comfoting arms of the cardboard esk "BIG MAC" to lick my wounds a fall from my dizzy new euphoric heights and came crashing straight back to earth "thanks Dr ***** for that short period of time i was flying!! clip me wings and leave the surgery!!!!!!!!!!!!!! (now that im off my soap box ) how is everyone ????
glad to hear meds working ,sorry about the negativity from your neuro doc. take strength from fact that symptoms are controllable.
ive been feeling great , walking better but to keep there increasing my requip xl and added in slow release sinemet overnight . just had review were they stressed exercise and keeping fit most important thing i can do .which it sounds like youre doing . said the med team will support me in being able to work and doing what i want . but being realistic i should be able to do what i want but i wont have 100% perfection . im happy as long as can do most things !!
did you find a support group ? did you find it helpful
I am fairly new to the forum too as told recently by neuro doc that she thinks I may have pd. Waiting for Mri and datscan to confirm. I find it a huge help coming on here either to post or have a go at word games etc. Had some helpful advice from folk too. I wish you all the best
Glad you can see the funny side of PD yes i'm sure you would have lots to talk about with another parkie!
As for the neuro, I seem to have a good one, my appointments last around half hour. I have heard though that some neuro's can be quite rude and have a rather nonchalant attitude, I'm sure you can be referred to another one in the area. You can only but enquire........
Thank you shefinn, I feel better about things now I know scans are sorted. Yes, it churns around in my head all the time but I feel a sense of relief that something is being done to sort this diagnosis one way or another. sOmething must be causing these things! My hubby and I went out at lunchtime and looks around some Xmas decorations at the local garden centre. My arm was shaking more than ever. After a bit it calmed again. Felt so silly. Sleep well.
Yes indeed my chocolate teapot asks you questions and then moves onto the next before you finishing answering whilst all the time checking his Rolex and admiring his running shoes ready for the sprint back to his car when end if shift buzzer goes off.
I'm sure he also moonlights as a operator at a call centre as he reads from his script .and to think I wait six months to see him.
Does anyone have a sensation in the front if there head like the brain is being pulled from there eyebrows backwards. As its really annoying cheers steve
Does anyone have a sensation in the front if there head like the brain is being pulled from there eyebrows backwards. No thankfully talk to your specialist asap.
Sorry to hear about the pain in your head - don't forget that you can speak to a specialist nurse via the Helpline on 0808 800 0303 (open Monday to Friday 9am - 7pm, & Saturday 10am - 2pm) for advice. Or your GP might be able to help with this.
Morning all have researched this sensation at the front of my head just above my eyes and have found out its a rare side effect of ropinirole drug I am currently taking so will discuss with the neurologist this month. I would like to take this opportunity to say that when this symptom was put forward to my neurologist he suggested that I will need a Mir scan to discount a brain tumor and when put towards my parkinsons nurse I see once a month she said ask the neurologist. Now to say I have a complete lack of confidence in the Nhs to which I have paid into all my life is an understatement as I can spend a few hours researching and find out more than the so called specialist.
Think it's time to go private at least you get a cup of coffee whilst waiting to see the chocolate tea pot for his hurry you up at the door experience. I'm a happy go lucky person and it takes a lot to wind me up but I am really feeling frustrated now with a complete lack of empathy and professional advise and care from these so called experts do they think my condition is a joke as I'm only 44 and still have a management career I must be ok? Anyway frustration taken out on the forum time to go to work
go back to your GP and ask to be referred to another hospital . youre intitled to change drs if not getting on with them . in my area theres 2 local nhs trusts that treat parkinsons very differently . the one i go to (nottingham) treatment is all research based and never rush me through appts . in fact be prepared to be late for all appt times cos consultant gives you as long as you need . so if ok and no problems ive been in and out in 10mins but when problems have been in for 45 mins .i alternate with consultant and pd nurse but have phone line if any problems inbetween. i get seen every 4 mths at present
Hi all, hope all OK as far as possible. When I was diagnosed, 16 years ago, I was seen by Prof Andrew Lees privately but my insurance company wouldn't pay out for long standing illnesses and luckily, the Prof agreed to take me on under the NHS. I've been treated just as well at the National in Queens Square as I was privately.
Prof Warner took over when Prof Lees retired and he also includes myself and my husband in any decisions about my treatment
There's not much they can do now I am on the highest doses of meds so am waiting for an assessment appointment with the surgical team to see if I am suitable for DBS.
Diagnosed today, after two years of confusion and much pain caused, I thought, by a badly broken left ankle from slipping down the stairs; my foot wouldn't heal in the correct position as foot and toes kept curling round, so I couldn't walk. I'm just recovering from surgery to pull foot/ankle/toes into the correct resting/walking position by lengthening the Achillies and foot tendons. However, I had also been telling GP and Orthopaedics surgical team that 'I have this strange left arm and leg tremor...', finally a different GP sent me to see a Neurologist and today I have been diagnosed with Parkinson's...
