Newly diagnose


#1

I was diagnosed with the early stages of Parkinson's yesterday. I am still in shock and still find it hard to take in. With the exception of my wife I have not told anyone but I feel I will have to eventually. From my personal point of view I am 64 in April, active and apart from my hands shaking occasionally I feel very well. My major concern at the moment is losing my driving licence although obviously I can see the need for it if necessary.


#2

Hi Pretonboy

Yes it is a shock and takes some getting used to. The forum is very useful and I'm surprised you haven't had a reply yet.

My advice is tell everyone, in your own time, you will get an interesting range of reactions, but there is no point (in my view) keeping it to yourself. 

I am 78 this month (16th) and have been dx five years but must have had it at least three years before that. I told everyone I knew and also in a village the jungle drums soon beat out and it is common knowledge.

with regard to your driving licence, I don't think you are under any legal obligation to tell the DVLA of a specific condition  but you must inform your insurance company or you may not be covered. There is some anecdotal evidence that the DVLA are becoming more strict. Only you can judge if you feel you have a problem driving. You have to let the DVLA know at 70 as you then have to reapply for your licence. I suppose if one feels a danger to others then one has a moral obligation to get some advice.

I made the mistake of filling in the form at 76 (you have to do it every three years) and stating "when I have a bad turn I just don't drive" That was it - licence revoked. Never mind, my chauffeur is very good in spite of my back seat driving.

Good luck

Jules77

Ps It was interesting watching Billy Connoly last night on ITV. I felt that there was an attempt to massage his condition for the cameras. Was that the right approach?

 

 


#3

prentonboy, welcome to the forum and this club that no one really wants to join!

As Jules77 acknowledged above, a diagnosis of Pd is quite a shock.  It took me a few weeks to comprehend and accept it, I recall.  Then I took my time telling friends and acquaintances.  Although I shared the diagnosis with some family members immediately, I delayed telling others such personal news until I was sure I had become accustomed to the situation myself.  Since I was diagnosed less than two months before my son's wedding, too, I waited till after that event to inform part of the family.  (What a great way to enliven a wedding celebration!)

However, the good news from me is that my diagnosis was made many years ago.  My first symptoms, which I did not recognise as Parkinson's, were in 1997.  I have had the disease at least 19 years, and I am still living the same life as ever despite losing my husband (and proposed caregiver) about four years ago.  But I manage my own household, travel often, play classical piano, practice Tai Chi, walk two to four miles each morning with friends, exercise on my elliptical, and take about 20 pills a day!  I have been exceptionally lucky in responding well to medications without many side effects.  The right combination of meds, lots of exercise, a healthful diet, and a positive attitude (to produce the best brain chemicals) are about all  I can do for myself.  Beyond that, luck takes over, I think. 

I wish you the same good fortune I have had.  For most of us, this disease is slow in progression.  And because you are already 64, you may be in your 80's before you undergo really transformative symptoms. (I just turned 70 this year.)  Best regards,

J


#4

Thanks for the posts they have made me feel better and more positive. A positive attitude appears to be the only way to go. Since my first post I have told a number of friends and family and I feel good for doing so. The interesting thing was that on telling people I was told about other people I knew who also had Parkinson's and I wasn't aware.

i was told that Ii had to tell the DVLA which I did almost immediately. They told me that I could surrender my licence or they could send out forms for me to apply for a new driving licence. I asked them could I drive in the meantime and they said it was up to my Doctor who I then had to phone back. He confirmed through his Secretary that I could continue to drive. As the only driver in our house losing my licence remains a major concern.

I now intend to watch (hopefully on catch-up) the Billy Connolly show.

 


#5

Hi  Pretonboy,

Yes, I didn't realise that you have to inform the DVLA irrespective of your age- sorry.

you probably already have done but go on the "daily life" section of the forum (Twinks) and you will see pages about this subject.

The Billy Connolly thing was a documentary about his travels across the USA. A very brave thing to do but I suppose he was well looked after. They seemed to be trying to hide his PD.

Regards,

Jules77.

 

 


#6

Hi Jules77 and Prentonboy,

You will have to have your driving licence reviewed every 1 to 3yrs., depending on what your neurologist writes in your report. If you think you are still fit to drive, when your review date is due, make sure you talk to your GP, PD nurse or neurologist, to make sure they send in a favourable report. I learned the hard way and suffered the consequences!!!

WE know whether we are safe to drive or not and shouldn't be treated like children!

Keep active, keep driving and all the best.

Twinks.


#7

 

Hi Jules77

Watched the Billy Connolly also, which was good, but I don't think they could have hidden the fact that he had parkinsons or else it takes one to know one with parkinsons. He even mentioned the fact that he had PD which was good in the fact that people could relate to how PD effects those who have it.

Regards Sheila


#8

Hi Sheila, Pretenboy, J of GC and Twinks,

I know we are diverting a bit from pretonboy's original topic ( hope you're ok with that Pretonboy).

I agree that Billly Connolly made no attempt to hide his PD, he's too honest for thet. I just thought the TV people were trying to do so.

Hope all the DVLA stuff from Twinks et al, is useful for you Pretenboy. It's certainly a minefield of a topic. I do so hope you can keep your licence.

Regards,

Jules77