Newly Diagnosed

Just thought I would drop you a quick line to introduce myself. My name is Martin Doyle and I live in Bodmin, Cornwall with my wife Diane.
I was recently diagnosed with Idiopathic Parkinsons. I will be having my first consultation with my Consultant to today. Unfortunately, due to the shutdown, it will be a phone call.

Just now I can’t think of anything else to say, speak later.

Martin

Hi @LIVERpool1956,

A warm welcome to the Parkinson’s UK forum.

I’m sorry to hear about your recent diagnosis, I can imagine having to have your first consultation via phone wasn’t ideal.

The forum is filled with people at different stages on their Parkinson’s, so you’ve definitely come to the right place for support and a chit chat. You might be interested to know that we have a ‘newly diagnosed’ section on our website with a lot of information that will be relevant to you at this stage of your diagnosis. You can find this section here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

We also have a confidential helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Call us on 0808 800 0303.

Best wishes,
Reah
Forum Community Manager

Hi neighbour! I’m in Devon!

Hi Jane_L Devon neighbour.

Thanks for taking the time to reply.

Well, where do I start? Bit of a side story. Been driving for over 40 years. Only had a few minor bumps in that time. Then in 2013 bought a new car. In the next 6 years I was involved in 8 RTA’s (Road Traffic accident). The last one was in Jan 2019 and the car was a write-off. If that wasn’t enough to put me off driving, I was diagnosed with Parkinson’s Feb 2020. So as far as DVLA and Parkinson’s goes, it wouldn’t bother me much if I never drove again.

It all started with a slight tremor in my left arm. Over the weeks it got worse, so after seeing my GP was sent for a DAT scan and Parkinson’s was confirmed. Unfortunately for me, and the rest of the world, there has been the lockdown. I say ‘unfortunately’ because I have not been able to see the Consultant to start my treatment. We did, however, have a phone consultation today and he did say my symptoms were only mild. We have agreed not to start on any medication or other treatment just yet, but I do have another appointment in 4 months. Hopefully. the lockdown will have ended, and I can see the Consultant.

As a result of the last accident I had to see a psychologist for depression and travel anxiety. I still hate getting in a car and have to force myself just to go out. Mind you, this lockdown suites me down to the ground. Won’t go out if I don’t have to, Government says I’m not allowed to. I also have other underlying medical problems, Epilepsy (no seizure’s in 36 years) and I have had various DVT’s in my left leg. I also suffer with sleep apnoea.

Current medication warfarin, mirtazapine and levetiracetam.

Well, that’s me in a nutshell. Hope I haven’t bored you too much.

Not boring at all. Me: 67, diagnosed in 2017 a few weeks before my 65th birthday. Taking 5 Madopar 125 a day (which won’t mean much to you now, but is a fairly standard dose for someone with moderate PD).

This lockdown is a read conundrum for treatment. I need a tweaking of my own meds which is being delayed because I can’t see a neuro or Parkinson’s nurse. It seems to me that if the situation continues for months, they are going to have to set up virtual consultations, and prescribe without actually seeing the patient.

Hi Martin and welcome to the Forum, I too am in Devon, Dawlish to be precise. I was an HGV Driver until Parky got to me at 58, unfortunate but there you go. Like @Jane_L, I too am now 67 and am on 250mg of Madopar x 5 a day. The main thing to remember is that you have Parkinsons, it doesn’t have you !! Anything that bothers you just ask, we’re a friendly and helpful bunch on here.

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Martin, I live in Thailand an ex pat. I was diagnosed five years ago
I saw the number one pd specialist he recommended Azilect as the best initial mono therapy. It worked for 4 and a half years. It was pricey for me as I had to buy it here £6 a day but worth every penny. The nhs May try to steer you away to a cheaper alternative just be assertive and see if there’s a co pay option. Your next five years will be pretty good and new drugs come online all the time, keep active cheers gb

Jane, I was diagnosed five years ago. My pd specialist put me on Azilect and it kept symptoms in check for 4 and a half years. I have now,today, started on madopar, low dose to start. I suggest you use these next five years to the full and hope like the rest of us a genius in a white coat comes up with a cure! If it’s any consolation I wish I were in your shoes now, newly diagnosed and not having to med up. Chin up .

Thanks for all your kind words of support. You all sound a great bunch. As my wife just said, “there is light at the end of the tunnel”. My reply was, “well if you can’t see the light at the end of the tunnel you must be in a cave. Turn round a walk out”. Ha ha.

Hi @Garybrooks and welcome to the forum community.

It’s great to see you sharing your experiences with other community members and I’m sure any support you offer will be much appreciated.

Kind Regards

Corinne
Moderation team

Azilect was also the first drug I was prescribed. In the UK it is usually called Rasagiline. I could not tolerate it. We are all different.

@LIVERpool1956, @Garybrooks, @Jane_L, forgot to mention that i’m a greedy so and so in that i’ve got TWO tremors Parky which is controlled by a Deep Brain Stimulator and a Dystonic Tremor which is why i’m on such a high dose of Madopar !! The other bit of advice I give to all newcomers is to have a positive attitude towards Parky and to do the best you can every day. Welcome to the Forum Gary and hope you find it useful. Take care, stay safe everyone.

Les

Our local PUK group is doing some stuff virtually. We have a FaceBook group and our exercise classes are continuing using Zoom. If Martin’s local group is doing something similar, he might be able to join in.

Welcome and I see you’ve already been contacted by neighbours. We’re a friendly bunch and yr local group will have lots going on that you can choose to join in with. The diagnosis takes some getting used to but you come to realise that you can cope with it, exercise is very important and if the prescribed drug doesn’t suit you there are others on the market to try. Please note that I was on Glaxo Smith Kline’s Ropinerole when my GP decided to substitute with a cheaper generic which just didn’t work - the difference is an inferior coating which affects the slow release. Be mindful of that because you may have to fight for the more expensive version.

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We are in Teignmouth. My

Difficult to type as cant see my words?? Anyway. My husband was diagnosed with PD recently and he is not coping at all and sees a bleak future. I want to give him confidence of me being with him always, but his reaction is, I dont need a carer. I say, change the carer word to, someone who cares then. He thinks I only care about my role and getting money from his parents for our survival. Which is way off the truth. His personality has gone from, caring tactile, demonstrative partner, to cynical disbeliever in me and anyone else. He complaind most days about an ailment, but will not address it with our Doctor. I find I cant help as not qualified, but it’s taken me 3 years to get him to a doctor and now hes gone back to, I’ll see how it goes, with ailments! He is on medication, but I feel, it’s not quite doing its job yet. And I need him to ask doc for help. He would just rather tell me each day, how bad certain things are. Advice welcome. I’m really struggling to know how best to react.

Hi @shirl123gym If you’ve read some of my posts above you need to tell your husband to take a different stance on Parkinsons. It is not the be all, end all, it is about him trying to live life as he always has done prior to diagnosis, don’t change a thing, just because he has it doesn’t mean it has him !! My wife is my carer but at the end of the day she is STILL my wife foremost. He needs to get in the habit of going to a Doctor instead of muddling through/putting off no matter how trivial he may think it is. Okay, i’m a junior member on here but have been through a lot with Parky and am still going through the Mill but I don’t let it get me down. I take each day as it comes and be the best I can and try not to put on my wife who is a saint for putting up with me for all this time !! Does your husband have any interests ? I play Bowls but because of Lockdown there’s nothing happening until this is all over. I am under a Neurologist at RDE Exeter who was trained at Addenbrookes and he is brilliant. Have you been in touch with a Parkinsons Nurse ? When I came to see her it was at Teignmouth Hospital, her name is Sian(I believe she is based at Totnes Hospital) and I have found her to be most helpful when i’ve had a problem. Your Doctors Surgery should be able to put you in touch with her, it is worth a try. Stay strong and most important of all, stay safe !!

Les

Hi all,
This is hard to reply to, but I will give it my best shot.

I’ve been reading other PD forums today and there appears to be a lot of people who, to me, appear to be in denial about their condition. Some have said they haven’t even told close friends and relatives they have been diagnosed. Yet here they are pouring out all their problems to people they don’t even know. I know this forum is for likeminded, or diagnosed, people and we are here to help one another. But who is more important? Your family or some nameless/faceless person in virtual space!

Quite a number of years ago I read a book called, “Feel the Fear, But Do it Anyway”. One thing I took from this book was, what’s the worst thing that can happen if I don’t face my fear? What is the worst thing that can happen when you tell friends and relatives you have Parkinson’s? A feeling of sympathy, empathy? What would the reaction be if you left it for a month, or a year to tell people? I can’t speak for others, but my family would want to know what I was ashamed of.

Some people say they try to hide their symptoms, tremors, slow speech or difficulty walking. They want to appear normal. What is normal these days? Do the visually, hearing or speech impaired hide their disabilities?

The way I look at this condition I have is to grab it by the scruff of the neck and just get on with life. Do what I like because I like what I do.

Sorry if I have upset anyone, or if you don’t agree with my way at looking things. But hay-ho, that’s me.

Martin.

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@LIVERpool1956, Martin, perhaps people opening up on a forum feel anonymous and feel more at ease doing this when in actual fact they should be up front and honest with those who are close to them in the first place. These are the important ones who will be there for them no matter what. If one of their friends drops off the scene then they aren’t worth bothering with in the first place.

You’ve got the right attitude Martin to get hold of it and rise above it and stick two fingers up to it. It is very doubtful you will upset anyone on here because you are being true to yourself and at the end of the day, we’re all in the same boat together but with different variations but our end goal is the same.

Les

I’m always surprised when I hear that someone is hiding their Parkinson’s from work colleagues or family, because (to be frank) if they don’t know you have PD they will think you are drunk. But I was already retired when I was diagnosed and I did not have to deal with the problem of telling workmates or an employer, so it was easier for me.

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