Diagnosed Today


#1

Hi,
As the title says i’ve just been diagnosed with Parkinson’s today!!!
Shocked at the reality but was almost certain of it beforehand!
I’m determined to face this head on but obviously unsure of the future!!!
Gives me comfort reading other people’s stories,if I can say that!!!
Just thought I’d share!!
Ali55!!!


#2

Hi Ali55,
How did your neurologist communicated? Did he/she give you collateral info? What symptoms do you have, does it impact your work and, if I may ask, how old you are?

From my experience, I felt quite “left alone in the dark” but I found a neurological Centre and had a second advise which was good. They proposed me to participate in a clinical study. Not yet decided if I will do but at least I feel assisted.

Have a great day


#3

Hi Ali55,
Welcome to the forum. I’m sorry to hear that you have Parkinson’s. Even when you know what is coming it’s still a rude shock to have the diagnosis confirmed. It is more than 13 years since I was diagnosed and I remember the day quite clearly.
Facing Parkinson’s head on is a great way to deal with it and there is a lot of support out there to help you take control. Joining this forum is a great start, there are loads of people here who have gone through exactly what you are facing now. Ask anything you like - there will be somebody here who can help.

Parkinson’s UK have a network of local advisers who are very knowledgeable and can signpost any other support you need. Your neurologist should have put you in touch with your local adviser. If not you can find them through the Parkinson’s UK helpline. It’s also worth finding out if you have a Parkinson’s Nurse Specialist in your area. They are our not so secret weapon. They are generally more available than neurologists and can advise on medication, lifestyle etc.

It’s worth being aware that if you drive you have to inform the DVLA of your diagnosis. The most likely result is that you will get a new licence subject to 3 or 5 year review.
You need to inform your car insurer but should not expect any increase in premiums.
Unless you have a safety critical job it’s unlikely that you have to tell your employer about your diagnosis.

eWizzard mentioned research studies. There are loads of these and you can search a list of them here. Many of us find that taking part in research is a great way of facing up to Parkinson’s.

I hope that helps you deal with your new

Elegant Fowl


#4

Hi Ali55
I think Every PD patient remembers hearing the diagnosis confirmed, probably word for word. Just remember that you are no different than you were the day before - there is just another label to hang things on.
Good luck. I think you will find the Forum to be a tremendous help.
Knine
Audrey


#5

Hi, elegant_fowl,
First thing I did was contact DVLA and insurer.
Great to hear theirs support out their!
I’m finding it better with input from the likes of yourself. Going through same issues.
Every Days a School Day!!


#6

Hi, eWizzard
Neurologist was very good and asked for questions after consultation! My head was all over the place, so didn’t have many!!!
I do now!!!
Being referred to a clinic at my local hospital!!
I’m 55 Years young and still working. It’s impacted on my work, slightly but can still carry out main duties!
I’ve lost power down the right side, have a hand/arm/leg tremor and drag my right leg a bit. Happy Days!
I’m remaining positive through exercising etc!!
Thanks for the input!!!


#7

Hi Ali55,
Its always a shock even though you know something is wrong. Give yourself time to digest the information given. Find a Parkinson nurse either through your neurologist or hospital. They are a great source of practical information. They can also help you through the minefield of medication. Keep exercise up. Yoga and look up PD warrior exercises on YouTube. Diet can be very important but take your time. Life is just a bit different and it takes time to adjust.


#8

Thanks so much for the advice… already started Yoga but will definitely check out PD warrior on YouTube… yes , and I will take my time. Thanks Divine1


#9

I will keep that in mind… I AM the same person with just another label… brilliant!!
Thanks Knine!!!


#10

I can remember when my husband was diagnosed 5 years ago. Dreadful shock although we knew which sounds silly. Went home & cried. Sending you a hug.


#11

Thanks very much… can I ask what age your Husband was and how he’s getting on?
Cheers marilyncookspain


#12

Hi Ali. My husband was diagnosed in 2013. For 3 years he didn’t take any meds as he only had a tremor in his right hand but not constant, writing was getting smaller, he wasn’t swinging his arms when walking until it was pointed out to us. No real problems but his job involves a lot of computer work which made things difficult for him. He went on ROPINEROLE 2 years ago. Before I say anymore I want to point out the ROPINEROLE works wonders for some but unfortunately for us…Jim has suffered compulsive behaviour. (Read my story) physically he is doing great. His wonky hand is still wonky. He suffered from backache.( sitting to long in front of his computer working! ) Apart from that he is doing fine. Still mowed the lawns, we have a big garden, no huge problems. Biggest thing for me is the lack of expression, blank face or whatever it is called. He still has 3 years till retirement. He’s 62. Born in 1955. It’s not all bad. I consider him to have mild PD. He would say it takes him twice as long to do his work now tho. Hope this helps. Hope it’s a slow progression for you. Best Wishes.


#13

Hi Marilyn,
Thanks for the reply and glad to hear things are not too bad… all the best to you and Jim for the future…
Ali.


#14

Hi Ali55.
Yes you are the same person but different.
It is others whose attitudes change.
I have tried to keep things the same as before my diagnosis.
Impossible.
I have had to slow down, which has been hard .
Also if you do too well people start to doubt that you have a problem.
Catch 22.


#15

Hi Hubby,
Yes, when you mention slowing down… Massive difference from this time last year… I was a club cyclist doing 110 mile Sportives… now struggling with 20 miles!!! But STILL getting OUT!
Determined not to let Parkinson’s rule my life. Hey Ho, we’ll see how it goes!!
Cheers Hubby!!


#16

When the dust settles you will find your own path to living with Parkinson’s for me I try to keep three things in mind 1) I have Parkinson’s it doesn’t have me, I am still the same person just have to do things a bit differently. 2) The progression will be what it is but I can give myself the best chance by trying to stay well and positive. 3) This is happening to me not my family and friends, although they are of course affected; nine years on and it is accepted I will ask if I need help, accepted they can ask me whatever they like - as can anyone else I come across in my travels - and if they want to feel sorry for me, don’t do so in my hearing! I am managing my Parkinson’s as I choose to. Not saying it is always easy, or the only way, but it works for me. Find what works for you and hang on tight, it can be a bumpy road at times but it is possible to live a good life with my PD shadow never far away.


#17

A good post Tot.
I still find it difficult to ask for help.
I nearly killed myself yesterday moving a heavy and awkward reclining chair up two flights of stairs on my own.
It was nice when it was done, but I have suffered all day today.

It seems the more I can do,the more people expect me to do


#18

Great post Tot… i’ll keep those 3 things in mind as well. Especially number one…”I have Parkinson’s it doesn’t have me”
I find getting sympathy is the hardest thing to deal with. Suppose people are just being people. Said before, but i’ll be facing this hurdle with a gritty determination.
Cheers Tot!


#19

It is something of a balancing act I agree and asking for help is not an easy thing but in my experience all are happy to help and I am ok with that if the decision was mine and they are doing only what I need them to not taking over. Hope you are not suffering too badly after getting the chair moved, they are not exactly light!


#20

You’re welcome glad you got something from my post. Absolutely agree the sympathy is hard to manage but folk often don’t know how to react or what to say and there is often an understandable element of thank goodness it’s not me. You will probably find as I did, that ultimately people will take their cue from how you manage yourself and that helps a lot but I have also learned to accept it is usually around in the background some if not most of the time - I regard it as something of an occupational hazard these days!