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#1
Almost 3 years ago my dad went to the GP with an odd shake in his arm. With his usual bedside manner our family doc says 'probably PD or a stroke, i'll send you for an assessment' 'Push against my hand sir, now pull. Nope not PD and your ultrasound said not a stroke' Let's open up your shoulder and poke around at the nerves, nope not that Let's send you for physio. Mr Physio after weeks and weeks 'This isn't helping, when is your next test for something? Oh they haven't suggested anything else to try? I'm writing a referral' Let's do an MRI, scratch head nothing here Hmmm let's now do a DAT scan, but we wont tell you the results for two weeks cos the doctor is on holiday (I don't begrudge someone having a holiday, but surely someone else could have looked) So after nearly 3 years 'Yes, it's Parkinsons'. We're not a family of talkers, apart from me, I need details and no one wants to tell me any, all I know is the vague story above. I'm angry and upset all at the same time, but mostly worried about my mum, she won't show weakness especially around my dad and I don't live round the corner to make her let it out. I'm the problem solver, the fixer, but I can't fix this

#2

 

If you want details, questions answered, advice, an ear, ask away, we'll do our best too answer them, we cant fix it ourselves either,they are problems we encounter, some new too us,we learn as we go with the help of others.

 but we are here.


#3
Thank you sea angler. I don't even know where to start to be honest. I suppose at least we're grateful he finally knows what is wrong with him. I've seen that there are different types of PD, would he be told which he has by a doctor? If it's been slow to worsen so far, will the dopamine make it even slower? Any suggestions for a newly diagnosed person would be appreciated really

#4

 

HI

 I can understand it is difficult too know where too start.

Your father should be under the care of a Neurologist now rather than soley a Gp, a gp will still play a part in your fathers care,monitoring and adjusting medication,but, he still will be under the direction of the neuro,  it will be the Neuro who should explain diagnosis too your father and decide with your father where & what medication too start treatment with.

 PD is largely a umbrella term because it is unique too each of us in what symptoms we each suffer now and in the future or how quickly or slowly the PD takes hold, the symptomatic treatment is also unique too each of us in how effective it is or the combination of that best suits one may not suit another, it has too be monitored and changed as things go along, it's much like mixing a cake, till its just right for now.


Without knowing anything further, I would suggest your father gets a referral to see a parkinsons Nurse, learn as much as you can about PD, there are lots of booklets available online or in print, or search and ask here any questions you have or your father has, or P.U.K does have a help line, there are also local  groups and support workers too help your father,from benefits too employment help and house alterations and aids, if he drives he will need too inform the dvla and insurance.

 

 

 

 

 

 

 


#5

Hi

Sea Angler has said it, all in a very neat nutshell, so I'll just say

Good luck and best wishes

s


#6

Hi  Lostdaughter,

To add to the above, PD UK  has a mass of plain  English publications on every possible aspect of living with PD>  They are free to download, or if you   become a member ( I think it is still only £4 they will send you a whole bundle of  publications you will find helpful at this stage -  Choose Support for you at the top of this page and navigate from there . 

The help line above covers  a wide range of  medical and social aspects, inc. employment as well as providing a listening ear. and they never fall to get back to you.   They will be able to point you to a local Parkinson nurse (if there is one in your area) and to the PD UK Welfare Officers who cover non medical matters such as helping you to fill in forms to get the best outcome.

  I hate to put a downer on the likelihood of the neurologist,  who ideally should  be a specialist in movement disorders, providing much support  as PD UK have documented that 60% of PWP's (People with Parkinsons ) get no advice or info. whatsoever to go with a diagnosis of PD..  GP's usually acknowledge that they do not know much about PD . 

You have found the right site to  hear  about others experience of PD and get up-to-date information from PD UK  How lucky he is to have such a supportive daughter.

 

Best wishes. 

 

 

 

 

 

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#7
Thank you so much everyone. I wrote my original post in a bit of a flap (if you couldn't tell). He is being assigned to a PD nurse, who is on maternity??? But hopefully she will be able to shed some more light when she is back. I will definately have a read up on here, have found so much out already