What do I do now?


#1

Just back from the GP and he has referred me to a neurologist and for a PET scan with possible PD.

I’m trying to absorb the idea and feeling more than a bit panicky.

I’m a 64 year old chap running my own business. I have (had?) a plan to work 6 more years to out some money away and then retire to play golf and spoil my wife. Not sure what’s going to happen now. :confused:

My symptoms are leg pains, turned in left foot, lost smell, only one arm swinging, restless legs, intense dreams, constipation, memory problems, fatigue and I cant seem to hit the golf ball any more ! No tremor

He tells me the wait is around 18 weeks to see the neurologist. He’s given me Gabapentin for my leg problem :question: Why a PET scan :question: The rest of you seem to be talking about DAT scans instead

What do I for the next 4 months? Try to carry on as normal or attempt some self treatment? It might not even be PD so this could be 18 weeks wasted when I could be getting treated for something else.

Any words of wisdom from those that have been here before?


#2

Hi there. Sounds like PD to me. The turned in foot gives the game away, and I’ll bet you drag your feet in a typical PD shuffle. You may also get PD “Dancing feet” when you get up to walk? Stay positive, and if you can work, do so. PD is not a killer in itself, so just face forward and try to do what you can. No idea about the PET Scan. Mine was a DBS or some such, either way it showed the final evidence of a hole where there should be stuff! If that makes sense. Be Positive, and take life by the throat!


#3

Hi @AngusPrune,

A warm welcome to the forum.

We appreciate how confusing and overwhelming it can be for those newly diagnosed with Parkinson’s which is why we have an entire section on our website dedicated to this. On this page you’ll find all the necessary information that is relevant to you at this stage of your Parkinson’s journey.

We also have a helpline service where you can speak to one of our advisers and they can arrange for a Parkinson’s nurse to contact you within 24 hours. Many of our members found speaking to a Parkinson’s nurse soon after their diagnoses incredibly useful and reassuring so I definitely encourage you to give our helpline a call.

I’m sure you’ll also receive a lot of help and support from your fellow members.

Best wishes,
Reah


#4

Thank you both. I spent the day reading the site and the forum and feel a little less panicky.

My appointment thing came through and the earliest they could offer me was 25 June - 19 weeks away !!

Its going to be a long cold spring


#5

Hi im Keith 51 yrs old, im newly but not fully disgnosed yet but my doctor is 99.9% sure its PD . I have left hand tremors only one arm swings , have memory problems and my personality has changed, it wasnt easy so i wont tell you it will be, BUT it does and will get easier, , you sound like a man who is strong , even big strong men can cry watching a sad film , be strong in yourself , i have had to make a few changes but thats all they are changes , you have had to make changes and slight detours when traveling but you get there right
Dont let PD DICTATE what you can and can not do, , keep doing what you can and if it takes longer than normal to swing your golf club so be it
You still have the ones who love you around you take strength from them . If you play golf with true friends they wont care if you take longer. Remenber this isnt your fault You can and will survive this , believe me ITS NOT THE END
Im here if you want to chat, but i try and find the funny in everything now, so after this my replies maybe humerous if you can laugh at yourself it takes the power of PD away and you will feel yourself again
Hope this helps and makes some sense
Take care
God bless
Keith ( a friend )


#6

Thanks Keith

I’ve decided I cant wait till June and have today booked a private consultation in 3 weeks time… I think that once I know for sure I will build a plan for dealing with it. This halfway house is driving me nuts!


#7

Hi. Glad i could be of some help even it was only a kind word of understanding.
No one will judge you on your wanting a fast result. Myself and others like you with PD know its not an easy road just now. Waiting for the diagnoses can be as confusing , The not knowing seems to take forever but its not. Your mind is your biggest enermy ( NO OFFENCE INTENDED )
Believe me we have all been through the waiting zone
I know you feel down at times but you are stronger than that , if you wasnt strong you wouldnt be here or replied to me
We dont know each other but we are both on the same road and share the same fears.
But dont let the fear get the better of you
I had the same thoughts and fears you have.
Another PD sufferer was said to me
" Tomorrow never actually comes so why worry about it . Every tommorow eventually becomes today . So live for today "
I know it didnt make sense to me at first but it does now.
Dont let the uncertanty of what you dont know control today
PD is life changeing but thats all. When i feel bad i remind myself there are others who are worse off. Dont be ashamed of yourself your still the man you are
Whether ive made any sense is up to you
and i hope i have not offended you in
anyway
I will always reply to you if you need. Even if you want to let off some steam. I know where your at. YOU ARE NOT AND NEVER WILL BE ALONE. Here you have FRIENDS
Be strong
Take care
Keith