We are heading towards the 3 year anniversary of R being diagnosed with Parkinson’s and he is really struggling both mentally and physically. We are slowly telling some people about his illness but he is concerned that everyone is watching him and it is making him stressed and anxious. He is still only taking rasagaline but I really think he needs to take levadopa. His posture, walking, arm movement are all limited and he struggles with fine motor skills such as writing, typing and using cutlery. We talked about levadopa today but he is still worried about the side effects, despite the fact that it could improve many of his symptoms. I just don’t know how to help, I can see how stressed he is by it all. Sorry for the offload.
Hi RachRob ,
We’re sorry to hear Rob is going through a difficult time. If you suspect he needs a change in medication do please talk to his medical team as soon as possible. If you need help finding additional care – or just wish to speak with an advisor directly who can help you as well as Rob – please reach out to an advisor on 0808 800 0303. The helpline team has been immeasurably helpful to loads of our community members. They are always willing to do anything they can do to make your lives easier.
With our best,
Jason
Forum Moderator
Hi RachRob, sorry to hear it’s difficult. Don’t know what else to say other than what we discussed before. When he’s ready it will help. See if he’ll speak to his doctor or the parkinsonsUk helpline. I’m sure you’ve already tried. If your husband knows and trusts his GP have you tried getting him to speak to them? Might help.
Happy to talk if you need to
all the best
Podd
Hi RachRob
Could I ask which potential side effects he’s worried about that are not also potential side effects of Rasageline or potentially Parkinson’s itself? For myself I found talking therapy (CBT) was marvellous if Rob would consider it.
I’m 58 and diagnosed 5 years ago
Best wishes
Paul
Hi rachrob,
I’ve had Parkinson’s for at least 6 yrs maybe more, I started on madopar(levodopa) and then on Rasagiline in the last month. The side effects of Rasagiline have been worse than that of madopar but both got better within a week. What I’m trying to say is that most side effects are never as bad as you expect and normally only last while your body adjusts.
If you’re struggling then the extra medication has got to be worthwhile . Best wishes H
Hi
Such a difficult time, only your husband in conjunction with his neurologist and/or Parkinsons nurse undertaking his review can really decide. Sometimes the fear of side effects stop people from trying. Of course should he in conjunction with his medical team decide more medication is required and he begins it doesn’t mean there is going back, it can be changed.
My husband was like a new version of himself when he first began taking sinemet, overall was like getting him back again. Yes the doseage and quantities have changed over the years at different times but generally 12 years since diagnosis his medication continues to keep him well.
Best Wishes Jane
Thanks everyone for your messages. R has a phone appointment next week when I am at work which is probably a good thing. I am going to stop pushing and badgering.