Newbie


#1

Hi all,


My name is Peter and I have been newly diagnosed with PD.

At the back of my mind, I supposed I knew that there was something wrong with me but did not want to see a doctor who would confirm my fears. I finally went a saw a doctor who did say I could possible have PD just by looking at me and hearing the list of symptoms I described. I have just seen a neurologist who has basically said that there is a 99% chance that I have got it.

I have had a operation recently and this seemed to have exacerbated my symptoms. I was experiencing symptoms such as tremors, stiffness, walking a little funny and not being able to swing my arms when I walked. I now currently waiting for a letter to be sent to be which will detail what drugs they want me to take. I was told that if the drugs clear most of the symptoms then it is a definite diagnosis.

I also have a condition called polycythemia vera, which means my blood get too thick and I have to blood let every 8 - 12 weeks.

I feel very helpless and lost. I do have a supportive family around me but I feel very low. I have no idea of what the future holds.

Any advice would be great appreciated.

Many thanks

Peter


#2

 

Hi Peter

Thinking does go along those lines of if the drugs help it helps confirm the diagnosis although sometimes some of us may require a dat scan to help aid the diagnosis, there are a range of drugs too try and the dose of the drugs is usually built up 'slowly'  so everything takes time or a different drug is used or one used to run along side a drug. that isnt too to say that everything runs perfectly or clears the symptoms, its something as the condition is a progressive one that we continually have to work at they will certainly help you.

My late girlfriend was tested for PV but sadly passed away before the result was known , which i understand has its own symptomatic problems to live with?. i did some light reading when that came up for her but my memory fades another thing about Parky.

don't be afraid to ask questions or questions about your meds when you know more.


#3

Hi Peter and welcome to the forum,

I am sorry that you are feeling so helpless and lost after your recent diagnosis. Here in the forum you will find many people who are going or have gone through the same situation as you, so they will be able to offer you support and advice as Sea Angler said.

I just wanted to reassure you that, apart from the supportive family you are lucky to have and the forum community who are sure to help you with their experience, there is a wide range of support available to you. You can call our free and confidential helpline on 0808 800 0303 to speak to our trained advisers and Parkinson's nurses about any concerns you may have and to get all sorts of practical help, ranging from information on diagnosis, medication and treatments to advice on benefits, employment issues and resources available to you and your family. The lines are open tomorrow between 10am and 2pm and on weekdays between 9am and 7pm, so don't hesitate to give us a ring.

Whenever you are ready to reach out around you, there is also support near you like Parkinson's local groups (where you can meet up with People with Parkinson's and their families or carers), Parkinson's nurses (who can be an invaluable source of help) and local advisers (who can offer you and your family information and support on) that you can find here: http://www.parkinsons.org.uk/local-support 

In the meantime, you may want to have a look at some of our informative publications that cover lots of aspects about living with Parkinson's: http://www.parkinsons.org.uk/publications

I hope that helps make you feel a little more supported and less lost, but please keep posting and letting us know how you get on.

Best wishes,
Mara
‚Äč(Moderation team)

 

 


#4

Hi Peter


When i read posts like yours i sometimes forget that i have PD too. Strangely enough i have never experienced the real lows, Yes i get concerned for the future but i don't dwell on it for long as my life is so full of things i enjoy doing. I think my PD is relatively slow in its progression which allows me to keep functioning quite well.


I was 46 when i was first diagnosed but i had the symptoms for approximately 2 yrs previous, i had a suspicion that i was suffering from PD. after numerous visits to hospital i finally had a visual diagnosis followed by a DAT scan after which PD was confirmed. That was 5yrs ago.


Apart from medication, what helps me with this disease is keeping busy and focusing on what i  can do not what i can't do, but thats me! I am fortunate to be able to function and not have too many problems. We don't all necessarily have the same journey so don't despair. Hopefully you will find a lot of reassurance and help on here.

Good luck


Barnowl1


#5

Hallo Peter,

I`m sorry you feel so low. I remember the sense of shock before it eventually sinks in. Whatever else it`s not a condition which on the whole, progresses  fast.  I think you might find, as I have, that the  meds  are effective, and help hugely. I find that it`s often easy to forget about it in spite of the pills.

And, I do believe there are worse things. Barnowl  is right. Keep busy and enjoy family life.

Frances


#6

Hello Sea angler,

Thank you for your reply. I have just had my letter from the doctor and they want to put me a drug called Ropinirole in the form of Eppinix at 2mg doses for 2 weeks then up to 4mg.

Have you had any experience with this drug at all?

Many thanks

Peter


#7

 

I dont personally have experience of that Drug Peter, Im sure others on the forum do though


#8

Hello Barnowl1,

Thank you for your reply. I know I have to pull my self together and carry on. The doctor has not said I need to take a DAT scan. To be honest I have never heard of one. Is it necessary to have one? I have started to focus on my heath and change my lifestyle. I have stopped drinking and I have cut out processed food from my diet. I have also started yoga.  It is all starting to help me feel a little better. 

Many thanks

Peter


#9

Hello Frances,

It has started to sink in a little. I m not on any meds at the moment. I have changed my lifestyle completely, cutting out the drink and processed foods. The doctor wants to put me on Ropinirole. Have you had any experience with this drug?

Many thanks

Peter


#10

 

Welcome to the forum PMurphy - my medication is Ropinirole, made by Ralnea, the GP tried to transfer me to a cheaper generic version - namely Ropinirole made by Eppinex!!  I have been on the Ralnea Ropinirole for six years now and the change to Eppinex Ropinirole was disastorous to say the least.

Ropinirole is a Dopomine Agonistic and does not suit everyone, your neurologist should by rights have warned you of the problems it can cause with devastating consequences to some. I personally have had no problems with it,  I am now up to 16mg per day, BUT It does NOT suit everyone! Please be careful if you decide to take it and hope it suits you as it does me.

Good luck - Sheila 


#11

Hello

I am new here and got my formal diagnosis from a neurologist last week.  I have had six years of symptoms.

i started on Sinemet four weeks ago and Trihexypheridyl was added last week.

i want to get involved with fund raising but have no idea how to go about it.

i would also like to meet people and generally feel involved.

 

My user name is Donkey because I am stubborn and won't give in and be a label or a victim.

 

i am 61 so not terribly old!

 

 

 

 


#12

Hi Donkey,

Welcome to the forum - this is a great place to chat with others affected by Parkinson's and find support.

You might like to join a local group in your area -  find your nearest one hereAnd this page has some more info about ways to get involved with fundraising. 

And please do remember that we have a free and confidential Helpline service if you'd like to talk to one of our advisers, including specialist Parkinson's nurses on 0808 800 0303.

Best wishes,

Joanne  - Digital team. 


#13

Hi Peter


I hadn't realised you had replied to my last post to you, goodness knows where i have been and what i've been messing about at. You said that you didn't know what a DAT scan was and was it necessary.  I think from experience that if your consultant knows his or her onions then he or she will know if you have PD without a scan. I am now of the belief that you should only expose your body to radiation when there is no alternative. A DAT scan lasts for about 40mins. 


Exercise is good in so many ways so keep it up

Good luck


Rachel


#14

Aye aye Peter 

i just read your post and so far your a carbon copy of myself , it all began with an operation on my ankle 8 screws and a plate in there now , shortly after that I was called back to the hospital as they discovered I had too many red blood cells. So I was getting blood drained every month for about a year and a half and then it settled down , meanwhile I went to local gp complaining about small shake in my left hand and just like you no swing in my arms and tripping over small things and dr said this was normal for a man of my age !!! 54 at the time I had this for a year !!! Anyway I went to see a doc about a bad back he took one look at me and said you have PD I got some shock as I blamed bad walking on the spine and pelvis but that doc dx right away my story is so similar to you I had to let you hear it am56 now living with my PD good luck to you your not alone 

ian


#15

Hi everyone. I'm new to the forum and it's my partner who has PD. He is 64 and I'm 56. We've been together 35 years. He was diagnosed late in 2014. He has a medical history dating back 20 years involving bipolar - the drugs cause the same symptoms as Parkinsons (shaky etc)...so we have absolutely no idea when the 'real' Parkinsons started. So here we are - he's on Sinimet 250, Propanolol (meds he was on before for the shakes which he swears by), Clonazepam (for helping sleep - he's acting out dreams and having hallucinations). Like Newbie, he's worried about the future, and doesn't know what's going to happen. No-one can tell him for sure and his immediate concern is the onset of dementia.  My role is mainly making sure he remembers to take his pills (he's on meds for PD and bipolar), and trying to motivate him, take him out for walks and keep him active.  Our local council (Hackney) offers a lot of support and he got a doctors referral to a gym (we've been going for a year now), help with physio, writing and speech. Our local Parkinsons nurse is a huge help. We're trying to see what local groups there are (well I am so I can encourage him/us to go).