I genuinely don’t know what to do so thought I would see if anyone can offer thoughts or suggestions. Rob was diagnosed Dec 2021 with Parkinson’s or Parkinson’s Plus. He is taking rasagiline but turned down sinemet at the time. He can walk for miles and doesn’t have a resting tremor, he had a physio appointment last week and they were very pleased with his progress. However, what they didn’t look at was his fine motor skills and action tremor which is really causing issues - especially with writing and typing. He is working full time in a highly stressed job and has only told a few people about his diagnosis as he is desperate to keep it hidden for as long as possible. He is so down about how it is affecting his work but is still refusing to consider medication despite the fact that it could help him. Is there anything that I can do?? Have tried tough love which has led to arguments and marginal nagging - do I just accept that he is doing it his way?? I just am at a loss - it is affecting everything at home. Thanks for reading, any thoughts at all would be greatly appreciated. Rach
Hi Rach … We men are a stubborn breed. I’d leave it for him to decide when he is ready to talk / take medication.
I take Sinemet & find it helps but it has given me quite severe sleep problems that I am having to take more medication for.
Best wishes
Steve2
Hello Rach, your husband is exactly like me, I diagnosed 2018. My neurologist didn’t give me levodopa yet, but if he prescribe me, I will definitly refuse (for now). I think its his choice, and yes, I know the whole family suffer, but less than us, belive me. It’s only my decision who will know for my PD and what medication I will take. Best wishes for you and your husband!
He could try the medication to test it , he can always come off it if he wants , try B4 you buy
Hi @RachRob for what reason is he refusing?
In my family I am the patient, but I am very familiar with this pattern of behaviour. It does seem to be mostly men who adopt this attitude. Personally, I think it is selfish because the person with PD will be imposing unnecessary stress on his partner, to nobody’s real benefit., not even his own.
You can comfort yourself that, since PD drugs only mask the symptoms, his PD will not be progressing any faster than if he did take the drugs. It is a very good thing that he has taken the advice about exercise.
You haven’t told us why he won’t take medication, but you say he is taking Rasagilin, which suggests that it is L-Dopa he is avoiding. There is a view that it is better to put off taking l-dopa, because once you start taking it the dosage keeps having to be increased to get the same effect. A comparison is made with heroin addiction.
I was infuenced by this theory in the first year after diagnosis. I took too little Madopar, and put myself through a lot of unnecessary suffering,
Eventually I did some reading and came to the conclusion that the ‘like heroin’ argument is fallacious. Yes, it is true that over time I wiil need larger amounts of L-dopa to keep my symptoms under control, but this is because Parkinson’s is a progressive illness, not because I am addicted to L-dopa. If a junky stops taking heroin , his withdrawal symptoms are caused by the absence of heroin in his system. If I stop taking L-dopa I don’t get l-dopa withdrawal symptoms, I get Parkinson’s symptoms.
I hope I’ve given you some ammunition!
Hi Rach, as long as he is capable of deciding and expressing his medication decision, he should be left to decide himself. Your view on what is s the right medication is not universally shared, and some people do better on other options. I myself spent .9 years on Requip only. When I finally took levadopa I quickly went from very capable to having fluctuations all the time and right or wrong this compounded my negative view of levadopa. I’ve now just had DBS- is that something your husband would consider?
Hi Rach
I notice you don’t mention how old Rob is ?
My husband was 63 when we first thought he had Parkinsons and 65 when formally diagnosed. He was commuting from the SE to London working in an office environment as a Consultant Electrical Engineer. He was first very reluctant to tell anyone of his diagnosis and also reluctant to begin medication. However with the great care of the Parkinson’s specialists at Kings College hospital he agreed to try some medication. The initial improvement was tremendous and we hadn’t realised how bad his decline had been until we witnessed his improvement with medication. It was a trip up the steps of a tube station where my husband hung onto the hand rail to stop from falling which ultimately damaged his shoulder that was part of his decision to try medication. But the major impact was it gave him back his confidence to continue working in the job he loved and he didn’t retire until he was 74. He did, some years before he gave up work, tell his work colleagues and again was surprised by their understanding.
We found Parkinsons UK Helpline a great resource too, especially when first diagnosed. We wish you both well in this individual journey.
Thanks everyone for your replies. He is 58, diagnosed when he was 55. He feels that if he starts taking the levidopa now then it’ll his body will get used to it and it won’t be effective when he feels that he needs it. It is really interesting to read everyone’s thoughts. I guess I come from a background that if something isn’t right and there is a medicine that will help, I will take it. Reading here makes me realise that not everyone thinks the same way and I will have to accept how Rob wants to deal with his situation. Thanks everyone who messaged, Rach
Morning Rach … It is one of those questions where there is no 100% right or wrong answer.
Best wishes
Steve2
Hello RachRob,
Thought I’d add my ten pence worth.
67 - diagnosed two years ago. Symptoms for maybe 5 years.
I was coaxed into Levadopa by the neurologist on the diagnostic journey. If it works then you probably have PD. So, despite being a total pill avoider all my life I tried dopamine therapy and the result was really significant.
And I too was concerned about being on the drug for too long and developing tolerance and side effects. And also denial for sure. I still choose very carefully who I tell about my condition.
But - in tandem with an exercise regime and good food and the moderation of work’s demands - I’d have to say the meds work for me and give me back my fine motor skills and reduce the chemically induced depression to some degree.
So I had to think about it. Should I not take the meds yet and push on without? My PD nurse explained that these early years can be very well managed with Dopamine therapy whereas later stages will be more difficult. They take some adjusting to of course, but generally the result outweighs the side effects and I’m able to have some good times before the s**t hits the fan.
Ultimately it’s Rob’s Decision of course. For me, talking with a good PD nurse was the persuasion I needed.
God bless PD nurses!
Jon