So hubby got a letter on Friday from a new consultant that deals with young onset parkinson’s and after looking at his scan and talking to the original consultant he’s advising him to start medication. Due to the fact that he has more symptoms now than what he had in January. The medication is Madopar. Starting off on 1 tablet per day for 2 weeks then 2 tablets for 2 weeks then 3 tablets per day. Having read the side effects I’m worried how this will change him. When we first got the diagnoses a few weeks ago the original consultant was hoping he wouldn’t need medication for a while yet as he is only 43. I’m now back to the panicked stage where I’m scared to think about the future and how all this is going to affect hubby. Has anyone had problems with this medication or can offer advice on the best time to take it etc. You can feel free to tell me I’ve nothing to worry about and that I’m an over anxious wife that needs to chill out and calm down a bit lol. Hubby is a very happy go lucky, optimistic person and I would hate for that to change. Sorry for the rant but my brain is in overdrive thinking the worst. X
Hello Shonab have replied to your post but having problems with the technology. Bear with me while I find a way
Done it, hope it was worth the wait!
Hello Shonan, no need to apologise for your so called rant. I hope you felt a little better after off loading. Nor would I dream of telling you to calm down, chill out etc etc as you wrote in your post. Your reactions mirrors that of many and is perfectly normal. Getting a diagnosis of Parkinson’s is no Nitle thing. If asked most people would be able to say very little about this condition except people with shake. Well I have Parkinson’s and I don’t have tremor. The fact is Parkinson’s is a complex condition with a range of motor and non motor symptoms which to be frank could be more than enough to scare the socks off you and leave you feeling you may as well give up now - it is certainly the reaction of many newbies to the forum who have read everything they can find on the subject and end up worried, confused and not knowing what to do. What you will find is that Parkinson’s is very individual and it is impossible to say exactly how any one person’s condition will evolve over time. Obviously we can have similar symptoms
but our individual reaction can differ hugely. The same applies to the side effects of medication. They always list everything, it doesn’t follow that you will get all, most or even any. After the initial shock has worn off and things are a bit more settled, which can take a bit of time, you will find as we all do that you can live with Parkinson’s and it need not be the end of the world unless you choose to see it that way. I am not going to lie and say it’s all a breeze,
it’s not. It is a challenging condition and there is no cure at the moment, so in a nutshell the only treatment is symptom control but, and in my opinion it is a big but it doesn’t mean
there is nothing you can I personally am a great believer in staying positive that doesn’t mean being unrealistic about my situation but nor do I let it rule my life. For most it is a slow moving condition which gives time to adapt and adjust to change. I see the changes as a challenge and find ways to mitigate there effect. I see no point in worrying about my future when I don’t know where Parkinson’s will take me so instead I look to give myself the best quality of life I can today because I won’t get this day again. I plan ahead only as much as I need to enable me to do that. It’s not infallible, I have my moments but nearly 11 years
after diagnosis I am holding up pretty well. You are both at the start and it can seem horrendous but your attitude to it wil make a difference ie are you a glass half empty or half full sort of person. If the medication or timing of it is worrying you ask questions, make sure you understand what it is meant to do and if there are side effects bring them to the attention of your medical team. At the end of the day I will listen to the advice and recommendations but I am the one living with Parkinson’s, it is happening to me not them so ultimately I have to be happy with any decision made,
This is not an easy time for either of you. Best way is to take a deep breath, give yourself time to adjust to the diagnosis and take it one step at a time. I wish both you and your husband well.
Thank you so much for the reply. I think the problem I have is the lack of information we have been given. Due to covid there’s no chance of a sit down with the consultant to discuss things. We haven’t even met this new consultant. I’m normally a positive person but this has knocked me sideways. I, just want to do the best I can for hubby. He has a great attitude thankfully and that will help him thru. One week they say no meds and the next week week they advise meds. Its all happening a lot quicker than I imagined it would. I’m sure in the next few weeks I’ll get my head around it and be more positive. Thanks again for the reply and good wishes. X
Hi @Shonab
I would echo @Tot 's comprehensive and lovely reply, Parkinson’s is a very individual condition, as is the level and timings of medication that each person finds useful.
It’s common for people first starting their medication to build up the dose gradually, as your hubby’s new consultant is doing. This can help to avoid side effects when first starting medication.
There are various types of Parkinson’ s medication, with many generic and brand names, which can get a bit confusing. We’ve got a dedicated section on our website for Parkinson’s Medication, and Madopar is part of the Levodopa class of treatments.
Monitoring Parkinson’s symptoms can also be a really useful thing to do, this will help his clinic work out the timings and dosage that will be most effective for him.
Do also ask your hubby’s consultant/clinic if he can be allocated a Parkinson’s Nurse. Parkinson’s Nurses can provide a wide range of support, including answering any questions about medication, help you both understand his diagnosis, provide practical advice and refer on to other health professionals when needed.
Do also check out the Newly Diagnosed and Young Onset sections of our website too.
Our Parkinson’s UK Helpline and Local Adviser service is also at hand if you need a further chat, and we have specialist Nurse advisers as part of the Helpline service.
Warm regards,
David
Forum Moderation Team
Thank you David for the reply. Hubby keeps a diary of his symptoms and any changes that occur. Will get him to ask about the parkinson’s nurse as it would be a great help to have someone to explain about meds and the other million questions we have. X
You know what shonab, seeing your responses, I think once the shock has worn off and things settle a bit you and your husband will do just fine. Let us know how it’s going. Good luck for the next few months learning curve but give yourselves some fun too, allowing for covid restrictions of course. Life may be very Parkinson’s focussed but don’t let it define who you are.
So just over 2 weeks in and hubby
Thankfully has had no side effects with one tablet. Up now to 2 tablets since Monday and he claims he is starting to notice an improvement in his leg and arm. Early days but I hope we keep heading in the right direction. Can we be this lucky in getting his meds sorted so quickly 