Hi there, I have not long left hospital after a 3 week stay and a DAT scan has shown an abnormality in the left side of my brain, together with this and current symptoms my consultant has started a Parkinson’s treatment. I am also dealing with peripheral neuropathy which is likely to be caused by sarcoidosis in my left lung. A bit of a diagnosis out of the blue!. I am 46 years old and a bit frightened of what the future brings.
I have started an anti sickness drug today for 2 days then start on Siminet thereafter building up to 6 pills a day.
Any advice would be greatly appreciated.
Thanks Mark
Hello there, you will very quickly learn that PD is a very individual condition but there is an awful lot of common ground too and the forum is an excellent place for information and advice on all manner of things as well as unconditional support - which is a very long winded way of saying you are neither alone nor on your own. If I might throw in my tuppence worth, even with the anti nausea drugs, I still felt pretty rubbish for the first couple of weeks but the body does adjust surprisingly quickly. You won’t necessarily feel as I did, but if you do take heart it does pass. As to the future, if you can I would suggest that is not the most pressing concern just now. You need to give yourself some time to get used to your diagnosis your changed routines etc and to seek the information you need just now to cope with your immediate reactions. You will find, as we all do in our own way, a means of living with it that can be every bit as fulfilling as went before, it will just be different. I can’t deny it is not challenging at times but if you can have a positive attitude at least most of the time, it really does help. Don’t try to do everything at once, slow and steady is the key as you become ready to ask more questions or whatever and be in a position to manage the answers. I’m waffling but hope you can get the gist of what I am trying to say. Do let us know how you are getting on
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Thanks so much for responding to me as I wasn’t really sure what I was doing. I am really worried that the seminet won’t help me enough to return to almost normal and I can’t continue my normal job. Tbh I am really worried about the affects on my wife and family and our home etc.
Sorry a bit of a panic just now.
Thanks
Mark
For what it’s worth it seems to me you are having a perfectly normal reaction and it has clearly knocked you for six. In fact there are no right or wrong ways to react to these sorts of things, so the first thing to say is that what you are feeling now is normal for you. So you are not going mad or anything like that and the bottom line is you are worried and scared as far as I can tell (and don’t be afraid to say I am way off the mark because there is a lot of reading between the lines here) about two things.
First your job. As you write about returning to ‘almost normal’ and continuing your ‘normal job’ it would seem to follow that you have been having some issues, even if you haven’t discussed it with anyone at work. If I might suggest I think it worth getting some info so you know where you stand this is a good starting point
https://www.parkinsons.org.uk/information-and-support/work-and-parkinsons
You will need to decide when and what to say. Personally I decided to be upfront from the beginning which worked for me, there was no second guessing and I could get the help and support I needed. It might not be right for you as with everything there is no right or wrong way only your way but always best if made as an informed decision, for that you need information.
As for your personal life, I can’t tell you it won’t change things because it will but what don’t assume it will all be awful. Truth is at the moment neither you nor your wife nor anyone else can say what the impact will be. What I will say is I believe you have to go one step at a time, especially in these early stages and keep the lines of communication open as best you can. I know you will probably find this hard to believe but you will find a way to live with PD we all do. Not always easy, often a challenge and not a path any of us would have chosen but neither is it all bad, you can have a life worth living and you will find laughing can often equal the crying. It is early days for you, don’t let your mind run riot, take each day as it comes and you will slowly find your way. It may not feel like it now but you will find your way. You may also want to speak to the Helpline, I haven’t used it myself but it would be a neutral but informed option to help get yourself a bit clearer on the way forward for you. . The Parkinson’s UK helpline 0808 8000303
It is 9 years since my diagnosis, still here and with a life worth living, so take heart, take a deep breath and go with the flow, get what info you need now, ask questions and go at your pace. You can and will start to find your way once the initial dust has settled a bit, Hope this helps a bit, wish I could do more.
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Thank you very much for your reply. I will take your advice on board. I am very lucky to have an extremely understanding wife and a strong network of friends to help me out. Instead of racing ahead into the future I’ll step back and look at things how they are today and deal with the current condition. One step at a time. Thanks again . Mark. Take care!
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You are most welcome but don’t be thinking it’s a one way street, it’s nice to feel useful and if it has helped even just a little that’s a bonus.
Hiya,
I am now back working albeit a struggle. I missed 2 doses of Simminet. I felt terrible and really set back with tremors and tiredness stiffness etc, Is it likely that only the omission of 2 doses can make me feel this poorly?
Mark
Hey Mark
I’ve just been reading this thread and wanted to add a couple of comments myself. I’m not sure how useful they’ll be but I really feel the need to mention them to you.
My hubby was diagnosed in Feb '18. It’ll be one year this Sunday.
It was a big shock and we found it difficult to cope with.
I did lots of research and found him a Specialist Neuro Personal Trainer and this has made a HUGE difference in terms of Strength, Balance, Posture, Co-ordination and Mood He is now stronger and fitter than he’s been in years. I can’t praise this Personal Trainer enough. He understands the condition from a professional perspective but also from a personal perspective (he also has PD). Lots of banter between them both in the sessions have been as beneficial as the exercise.
The other point I’d like to raise is that talking can be extremely helpful in coming to terms with it and my biggest regret is that we didn’t get talking therapy sooner. I’m not suggesting that everyone will need it but I would definitely consider it (and even possibly for your wife).
Hi there and thanks for your reply.
I feel really positive through the strength given through my wife , family and great friends, I feel I am very lucky to have these guys,
Have decided to sell the house and move to a smaller cheaper home and also take a lower pressure carreeer to try and take pressure off ourselves on a monthly basis.
This together with the ongoing support is indeed a bright future for me and my family.
Symptoms a struggle but family values a great medication
Mark
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Hello, thought I’d throw my tuppence worth in again. First saw your posts re meds. I think it is always worth checking out any issues with medication with either your consultant, specialist nurse (if you have one) or GP - personally I would go to the specialist. if possible. Meds are good by and large but are a balancing act and even different brands may impact differently it could be that the timing and/or missed dose made you feel so rough. In the early days when getting used to taking meds (pre PD my medicine cabinet consisted of little more than plasters and unopened pack of paracetemol) I quickly found that I had a bit of leeway with timing for eg so it is important that you understand their impact, use etc. You will become expert at knowing what works for you, meds are changing sands and you become very aware but in the early days it is not always easy to know.
Second was good to read your recent post, sounding more positive and in control having made some tough decisions with your wife which was such a worry for you. It won’t always be easy but I reckon you will do ok. My best wishes to you and your family…
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Thanks for your response, I am due back at the specialist and consultant soon so see what their thots are.
Times are hard but family and friends are strong
Mark
Hi there, just wondering is it normal to have good almost normal days then terrible old man days where legs struggle to move? . I’m 45 with young onset pd and not sure how I should feel or what to expect? Tremble inside most of the time with nervy left arm but not sure if this is the medication or just normal symptoms?
Mark
Hi @Mark,
I’m not sure if you’re aware, but we have a ‘Young onset Parkinson’s’ category which you can find here - https://forum.parkinsons.org.uk/c/living-with-parkinsons/young-onset-parkinsons. I see you haven’t received a response to your latest comment as yet so you may find it helpful to post here instead as you’re asking for other people’s experience.
If you’d like to speak to someone about this, then please give our helpline service a call on 0808 800 0303.
Best wishes,
Reah