Newly diagnosed...I understand it's referred to as EOPF

Good evening, this is my first forum post and something I hoped I would never have to deal with, but here we are.
I was diagnosed a few weeks ago, I had some minor symptoms which I noticed about a year ago but thought nothing of at the time. I think I noticed the mild tremor in my left hand when I was struggling to hold screws steady, repairing decking or my conservatory roof seemed to take longer than necessary! The tremor aside, I then realised I couldn’t do the finger-thumb tapping thing as quickly with my left hand as my right. Went to GP, referred to neurology and now here I am with a prescription waiting for me at the surgery… which brings me to a question.
I’m 40 years old, in good health and with minor symptoms. I am going to ask the PD nurse when I see her next week, but what are your views on starting meds as a relatively younger guy. Long term use of meds has consequences right?! So what do I choose…it feels at the moment like I need to choose between symptoms or side effects, and I don’t particularly like either. I promised myself I would do whatever it takes to slow this thing down even if I can’t stop it.
Apologies for the rambling message, I am grateful for any views.
All the very best.

Hi Daniel. Welcome to the Forum. Very sorry to hear of your diagnosis. We have lots of information and advice for those newly diagnosed with Parkinson’s on our website, which you can find here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

We also have lots of information on different treatments, including medication, which you might find useful: https://www.parkinsons.org.uk/information-and-support/treatments-and-therapies-parkinsons

We’d also recommend you contact our Helpline, as they’ll be able to advise you further. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team

Hi Daniel,
PD is as you say for life and it is how we deal with it that makes the difference.
We may all share the diagnosis of PD but we all seem to have different versions. Some of us shake (me, my whole right side ) others have no tremor but terrible stiffness and pain. The list goes on. Some have it all.
Everyone’s journey is individual and that’s the way to look at this. I personally have held off from the drugs, my choice. But I will never say never.
The gym works for me but again not everyone’s cup of tea!
This is still so raw and new to you, take time to process the diagnosis and arm yourself with as much professional information as possible, PD nurses are the font of all knowledge!
The people on the forum are so helpful and supportive.

Take care and I wish you well
Annie:)

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Hi Daniel.

Great to hear that you are reaching out for support and guidance - there is lots out there.

I was diagnosed just over 5yrs ago at the age of 42, and started meds pretty much immediately. My consultant always asks the question “Is Parkinson’s stopping you doing anything?” If yes then it would definitely be time to at least strongly consider starting/increasing meds.

Having said that there is an increasing body of evidence out there which says that exercise is felt to be the only thing that can potentially slow progression, although as with all research around Parkinsons there is no robust way of measuring progression. I do a lot more exercise than I did pre-diagnosis and all I can say is I feel a lot better for doing it.

If you use facebook or twitter there are various sites which you may find helpful. Can I suggest linking in with the “younger Parkinson’s alliance” on facebook, and perhaps search for #yopd on twitter (young onset pd).

I could ramble on with lots of comments and things I have learned along the way, but it’s easy to get overloaded with info in the early stages.

Please feel free to ask away any questions or message me if you like.
Take care
Nick

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Hi @dbevan79

I wholeheartedly agree with the comments above. Remember, everybody’s approach to meds is very different, and different things work for different patients eg sport/gym, although exercise of any description is undoubtedly good for us.

I’m 40 and recently diagnosed. I’m on Madopar, Citalopram (mood, long standing) and melatonin (sleep). Definitely of the opinion, that, like @buzbyc, if the Parkinson’s is stopping you from doing certain things, and this is frequently upsetting or frustrating you, the meds should be given some serious consideration. We’re young and may have some way to go living with PD, so don’t be hard on yourself. It’s also about quality of life. Do everything you can to help yourself absolutely, but if it takes some low level meds to keep you feeling as good as can be, so be it.
Take care of yourself :blush:

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I was diagnosed 6yrs ago at 60 so not quite the same situation. For a few years I was only on rasagaline which I believe has no long term side effects. Sinemet was added and I will try to keep this as low as possible due to long term side effects e.g. dyskinesia. It is a difficult balance, we are all different, and “experts” have conflicting views. I agree with the other comments and exercise certainly helps me.

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Thank you all very much for your thoughtful responses. I’m going for a first meeting with the PD nurse on Tuesday so will go with a list of questions and take it from there.
Exercise has definitely been high on the agenda, in the past I’ve been a bit of a fair weather runner, but now it’s going to be all about discipline!

Hi. I was diagnosed 3.5 years ago at 47. I took no medication for the first year. Then resagaline for Six months. Added 2 Sinemet 100mg for a year then up to 3 sinemet for the last year. Until the last few months this worked ok. However I now seem to suffer dystonia in my left leg and shoulder 2 hours after taking sinemet. This affects my walking for about an hour. If I don’t take the sinemet I don’t suffer dystonia. It’s got to a point where I’m better of not taking it if I want to go for a hike. I’m going to discuss my options on next neurologist appt. I guess this is a side effect. During the last two years sinemet really helped my tremor, stiffness, facial expression and general mood. Overi It was worth it.

Thanks Gingerjohn - just had my first meeting with PD nurse today, I found it a really helpful conversation to have. As my symptoms are not bad, not having significant impact on my life, I’ve decided to hold off on the medication for now. I didn’t want the risk of dyskinesia etc to kick in over the next 10 years, but I’m also going to be sensible about paying attention to my symptoms as I go along. Exercise is going to (hopefully) be my medication for the foreseeable future. I do understand that meds will be necessary at some stage, but going to put it off for now.

All the best.

So glad it went well.
:slight_smile:

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Hello Daniel,

Great advice from everyone, especially to highlight the importance of exercise.

It is impossible to know what the future holds after diagnosis, but it was the unknown that scared me most. Seventeen years later I cannot say that everything is ok. Yet I have had far more good experiences than bad and many plans for the future. Life remains a treasure. The way I manage my disease will not work for everyone. We are all individuals our disease profiles are individual too. But I found a way to stay active and to feel overall healthy. So, I offer my PD history in case it may encourage others.

I was working in the pharma industry, focused on neurodegenerative diseases including PD, when the fingers of my left hand began to twitch and I began to stumble with my left foot when out running. I was 48. These symptoms began to intensify until by age 50, I began to suspect PD and was subsequently diagnosed with the disease. Having read widely about the therapeutic options, and having consulted with neurologists in my network, I decided on a low dose of a dopamine agonist that I titrated against my symptoms. By this I mean that I only took as much as needed to achieve the level of symptom control that I needed. Having always enjoyed sports, I kept them up religiously with the all-round benefits of swimming topping my list.

The dopamine agonists on the market bind slightly differently at their target and I tried them both to decide which worked best for me. I was very fortunate as a dopamine agonist plus exercise kept me moving well for many years with the disease causing only limited impact on my day to day life.

By about 10 years post diagnosis, dopamine agonists were not enough and I added low doses of levodopa, again taking only as much as needed to achieve sufficient symptom management while avoiding or diminishing side effects. It is my impression that this approach has helped me to distinguish between disease related symptoms and drug related symptoms. Specifically, the most troublesome side effects I have experienced are dose related insomnia and low/vacillating blood pressure in response to high doses of dopamine agonists when taken in combination with levodopa and dystonia in a dose related manner in response to levodopa.

After about 6 years of therapy with a dopamine agonist and levodopa my symptoms again became difficult to manage effectively, so I switched to an alternative levodopa formulation and I am again functioning well although the duration of efficacy is increasingly shorter. Next step will be DBS if I am lucky enough to be accepted for this treatment.

A comment regarding PD symptoms - muscular stiffness and personality/cognitive/mood disorders can be seen in PD and they are often attributed to disease effects. The fear of these symptoms as an eventuality can in itself be debilitating. My experience suggests that in many cases these symptoms are either partly or largely drug and/or life style effects and/or simply the result of getting older. If a person is not sleeping well or suffering from dystonia or other drug related effects, personality/mood/memory alterations are almost inevitable. In many cases, these problems may be alleviated or avoided through dose or drug modification, sleep and exercise and by keeping a positive mental outlook as much as you can.

In summary my tips are to find a neurologist that you click with, listen to your body and respond accordingly, exercise regularly, find a good physiotherapist, eat well, sleep as much as you can to give your body a good chance to recharge - some excellent research in this field of late - keep thinking positive, keep reaching out as you are already doing, stay informed. From time to time you will be angry, frustrated and more. It is not easy. But life is a wonder and there are adventures to come. Just keep going Daniel.

Good luck and take care,
Lynn

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You are absolutely right, there are choices to be made. Some experts would say get going with the meds early. Others would tell you to hold your fire. the only advice I can give you is to research the disease thoroughly before you do anything. You have to take responsibility for your own condition. With PD everyone is different. You will find plenty of advice on this forum, some of it wacky but a lot that is worth delving into. Personally I have gone for Mucuna Pruriens rather than conventional meds to avoid the build up of side effects. Exercise turns out to be very important too. Hang in there and do what you feel is right for you! Cheers JCPB

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Hi Daniel

Like you I have recently been diagnosed with Parkinsons Disease. It came as a massive shock as I had not had any health issues for 40 years and was extremely fit having spent all my adult life engaging in long distance running to international standard. Initially, I thought that I had a sports injury as the right leg was coming through in a smooth motion and my right arm was swinging as well as the left arm when I was running. I was also having a lot of cramp in my right leg and lower back which again I put down to age ( I am 60 ) and general tiredness. I eventually went to my GP who in fairness responded immediately when I told him of my symptoms. Within 3 weeks I was sat in front of a neurologist who gave me the bad news almost immediately. I talked through the options with him and decided to go onto a very low dose of medication (co careldopa ). He also advised that it was essential that I continue to run (which I do daily) and whenever possible stimulate my brain with some new mental activity. The medication has worked for me as I no longer have any cramp or twitching at night and now have 7 hours sleep every night and wake refreshed. My right leg and right arm movements are better. The medication does make me feel a little nauseous at times but when I feel this coming on I find eating something sweet like a banana or biscuit helps. The low dose of medication has worked for me and this combined with physical and mental activity enables me to live well and keep the condition under control. We all have a journey ahead and live with the condition as best we can
emans that seems.