I was diagnosed with PD in April although in hindsight I had symptoms for some 3-4 years, so it is very much early days for us and like everyone I would imagine, we are still coming to terms with its implications.
My symptoms are still relatively mild I feel and are best described as inconvenient and manageable, although since diagnosis they are gradually worsening.
I have resisted going on medication so far because I am worried about the potential side effects and also concerned that once I start taking them the sooner I’ll have to start taking more and more.
(Although my wife says I’m pig headed and in denial!)
I wonder if anyone else had similar concerns about starting medication and what their experiences were once they started on a course of treatment.
Hello @Ofmo and a warm welcome to our forum. Thanks for sharing your story. It’s good to hear that so far you are managing well. I’m sure the other members will be welcoming you here soon.
It’s normal that you’re reluctant to start medication, especially if your symptoms have been mild. This is, of course, a personal decision reached depending on how you feel and in consultation with your doctor. Other members will be able to relate to this and tell you about their own feelings and experiences.
To learn more about the different medications you could be offered, their side effects and how to cope, you can read this page. If you need support or advice, please be in touch with our Helpline at 0808 800 0303. I’m looking forward to reading more from you in the future.
Forum Moderation Team
I am in the UK, bit here is the latest advice from the American Academy of Neurology (published November 2021) -
Early Parkinson’s Has New Guidelines for Using Dopaminergic Therapy (parkinsonsnewstoday.com)
Other articles I’ve read, commenting on this latest advice, focus on the benefit of living the best life you can ‘now’, and the increase in motor ability (and non-motor symptoms such as mood) enables a greater potential to improve overall fitness, which seems to be a key factor in slowing decline.
I was diagnosed this summer and went straight on to levodopa, and after getting over the shock, i have improved my health and fitness dramatically, and feel I’ve done the best I can to improve my future health.
I am in exactly the same situation as you. I was diagnosed in February but started showing symptoms before that. I have a noticeable shake but I still can do everything I want to do. At the moment I sleep well and don’t have constipation which are the side effects I am most worried about. I intend to review my situation in February when I should see the PD nurse.
My criterion will be if I can no longer do something such as do up buttons etc. I feel I should also think about my wife who although she doesn’t say so must be embarrassed when we go out together.
Anyway I will pay attention to any advice you get in answer to your question.
Hi, I have been diagnosed for about 10 years and I was put on medication straight away. I am 65. I shared your worries about the long term effects of drugs but my Parkinson’s nurse says that there are plenty of options regarding increasing and or changing my medication. My symptoms are still well controlled. Enjoying life now is my desire. After all, even without Parkinson’s, we don’t know how long we’ve got!
Mark you really don’t know that your wife is embarrassed. She may feel more like I do with my husband which is more frustrated for you than anything. I am not embarrassed to go out with my husband because of his tremor. He is still the man I married and is no different in my eyes. So please don’t just assume your wife is embarrassed. It is what it is and you both have to learn to deal with it and you will in time.
Hello and thankyou to all who replied to my original post.
I think I’m just going to have to bite the bullet and start taking the meds that I have been prescribed and see how it goes.
As I said my symptoms are fairly mild at the moment (although wiring up a 3 pin plug recently was frustrating!) although I have noticed a worsening of symptoms since diagnosis and I was sad that I could not write Xmas cards this year.
The worse thing is not knowing how its going to progress, but I feel immeasurably sad for my wife, after all there is only one thing worse than having PD and that is being married to someone who has.
Thanks again for all the replies, best wishes to you all,
Hi Ofmo, what am awful load you must be carrying on your shoulders feeling sad for your wife. I am in your wife’s situation and I can bet your wife feels exactly the same way as I do about the diagnosis. Firstly I am so relieved that my husband now has a diagnosis. It means he can go onto treatment that will help with the symptoms. Secondly my husband is still the man I married with or without PD, the diagnosis doesn’t mean we can’t enjoy our life together. We are planning on using the diagnosis for an opportunity to get fit and enjoy doing some activities together. Exercise is so important with PD and I am going to encourage my husband to keep moving. Not just for him but also for me. I have found during the pandemic that i have not moved and exercised enough and it is showing in my fitness level. We are really looking forward to getting out there and doing stuff together.
No one knows what cards they are going to be dealt with, anyone can be diagnosed with all sorts at anytime.
I suggest you stop feeling sorry for your wife because it will only drag you down and that will have an even bigger effect on your wife having to see you so low in yourself. Talk to your wife about your diagnosis and reassure her that you are going to do everything you can to deal with it and still enjoy your life together. Honestly if I thought my husband was having the same thoughts as you are with feeling sad I’m not sure how I would deal with that.
I do get where you are coming from but please don’t be dragged down with this sadness. You still have a life to live, be positive and enjoy life with your wife.
All the best to you.
Having started reading this topic seeking general guidance, I soon realised that Ofmo and I were in a very similar stage of Parkinson’s as regards diagnosis date, symptoms and being wary of starting medication.
From July last year, I successfully sought to control my mild symptoms through a minimum of two and a half hours intense rowing exercise per week. Unfortunately, in December another medical condition arose which curtailed the rowing and resulted in admission to hospital in February, for surgery under general anaesthetic.
The stress caused by this and the death of a parent caused my symptoms levels to escalate. Although I am back into the rowing regime, it does not appear to be having quite the same effect, but perhaps that’s just frustration on my part.
The upshot is that, like Ofmo, I also have now decided to “bite the bullet”, go onto whatever medication is advised by the Parkinson’s team at my local hospital, and hope I get lucky as regards side effects