Hi I am new to all of this but for over a year my partner who is only 49 has had this right arm tremor and some twitching when going to sleep which seems to be getting worse. He’s kept it to himself mainly and suffered in silence until recently he said I think I’ve got PD. We’ve contacted our GP who has referred him to a neurologist soon. We are a youngish couple and are set to marry on our anniversary next September. However, we are going through this wide option CNS problem which is a huge confusing mine field of options which not a lot of information and apparently it’s hard to diagnose as I have spoken to several nurses at work as I am an holistic/complimentary therapist. I was told by one that there is alot of help online and there were support groups I just don’t know what to do as my partner is still working and is a very proud man this is going to be so difficult and we are scared and need some help
We wanted to take a moment to welcome you to the forum. You’ll find a warm welcome from our beautiful community as well, very soon. We understand how difficult things can be for People With Parkinson’s and their families and carers, so there is a wealth of data available on our website to make things a little less scary. If your husband is diagnosed with Parkinson’s we recommend this page as a starting point for your research. We also have a free and confidential helpline at 0808 800 0303, staffed with brilliant advisers who can assist with a range of needs. We wish you both the best, and if the diagnosis is Parkinson’s we hope we can help by supplying you with the best and most exhaustive information, research, and guidance.
All the best,
Hello CandJ, welcome to the forum and I hope I and others can help bit. First of all there is nothing wrong with being scared, it is a worrying and confusing time. Second thing to say is that your colleagues are right, if it is Parkinson’s there is no definitive test that can be done to give a diagnosis. Diagnosis is made by clinical observation and scans. The process can be slow, symptoms can be similar for several neurological conditions and what you certainly don’t want is to be misdiagnosed.
It is difficult to know what to say as your partner doesn’t yet have a diagnosis. So please remember that what I am writing comes from a Parkinson’s perspective but much if not all could probably be applied if it was found to be some other neurological condition. It is probably not wise to dig out everything you can lay your hands on about Parkinson’s partly because your partner doesn’t yet have a diagnosis but also because it’s unlikely to help your fear and indeed make it worse by dint of information overload. So keep your reading to the basics, it may even be worth looking at some of the other posts on the forum to give you a flavour of life with Parkinson’s should that indeed be the case - you can trust the information on the forum since people who post have direct experience. The Parkinson’s UK site also has a lot of information but remember not to get carried away.
Should it be Parkinson’s and I doubt you will believe this at the moment but will in time find it to be so, it is not the end of the world unless you choose to see it that way. It is not, of course, always easy. It can be challenging and frustrating but you can still have a life that’s worth having. Maybe you will need to do things a bit differently but you can still do them.
You will quickly discover that Parkinson’s is very individual and no two people will experience it in the same way. Equally the treatment is symptom control and there are a range of medications etc. Taken together can mean that it takes a bit of time to find the right regime. The progression of Parkinson’s in most people is slow so there is time to get things sorted. My own diagnosis was nearly 12 years ago, I live alone with minimal help and I am not unusual. Things do settle down and everyone finds their own way to live with Old Parkie, my own way is to stay positive.
Probably the best thing you can do now pending the appointment with the neurologist is to keep some kind of record or note of any symptoms your partner notices and anything you notice, not only physical but mood changes, triggers in fact anything which can help give a full and clear picture. Also note any questions to be sure you don’t forget anything.
I hope your partner doesn’t have to wait too long for an appointment. Although somewhat superficial I hope this has helped a little. My best wishes to you both.
Hi @CandJ welcome to our world, @Tot has once again given a very comprehensive response as she usually does !! As a man(or I was the last time I looked !! LOL), for some it can be daunting to have something wrong and try to hide it, but the thing is if you tell your GP as soon as something is wrong then the sooner something can be done about it !! He may be a proud man but as long as his employer is aware of the condition and it doesn’t affect his work ethic then there shouldn’t be a problem. One thing I will add to @Tot’s post is to make light of his situation with the tremor, have a bit of fun with it. You will be surprised how much it puts people around you at ease even if it is only close friends, they will grow to understand his situation and accept that it is now part of him. Take care and stay safe.