Hi All. My Husband has been recently diagnosed with early stages of PD, he’s 61. He only has a resting tremor in his left arm at the moment and no other real symptoms. MRI’s have ruled out anything physical that might be causing the tremor so consultant has said the likely cause is PD, gave us the option to have a DATScan and said he’ll see us again in four months to see if my Husband has any more symptoms by then! Doesn’t want to start him on meds yet either. We’ve decided we’re going to request the DATScan as this “is it or isn’t it” is not doing either of us any good.
I have to confess we’re feeling like we’ve been left in limbo slightly. I’ve done a significant amount of research online (which is basically my way of dealing with it) but most of what I’ve read has scared the cr*p out of me, so am freaking out slightly. I guess what I’m struggling with is not knowing how quickly the disease will progress and how much it will affect my Husband. I want to help and support him but don’t want to smother him. I haven’t shared much of my research with him because I don’t want to freak him out too.
I know that exercise is essential right now so we are going to sign up with the local gym and exercise together. He has always been very active and played a lot of sport so hopefully it is something that will benefit us both. Are here any supplements or vitamins that he can take that might help while he’s not on any meds?
I guess my purpose for joining the forum is to get as much advice from people that are experiencing this for real, to find out what helps and what doesn’t and basically just to have people to talk to as I don’t want to dump all my worries and concerns on my Husband. Just writing this has helped me a little bit.
Anyway, sorry its a bit of and essay and thanks for listening/reading.
I have been diagnosed since June 2019 and am not on meds, my choice but am a firm believer in exercise. I literally seize up and become down if I don’t exercise. Again not for everyone but if you can and enjoy it keep it up.
I also have a resting tremor on the whole of my left side, luckily I am left handed!
I believe if you have an Idiopathic tremor it is slower to progress?
It would be worth checking out local PD support groups they make you very welcome and lots of partners go too, you may have the opportunity to talk to someone in the same situation.
Hope this helps and always around to talk too…well unless I’m at work or in the gym!
I was diagnosed with pd xmas 2019 ime 59 i also only have a resting tremor in my left hand arm no other symptoms i had a ct scan found to be normal also dat scan which i thought was ok but my partner highlighted something, everyone is different as all members say on the forum we all have our own journey every body symptoms different but we all try to keep fit, eat a good diet, and carry on as normal i dont take meds , i take a supplement mucuna pruriens it works for me replacing dopamine in my head but like i said everyone is different worrying will get u now where chin up move forward my tremor is more embarrassing than trouble hope this help take your time
Hello Lin72 and welcome to the forum, exactly the right place to voice well, whatever you want or need. If I might make an observation based on what you have written, I think you have information overload. I can entirely understand your need to find out about Parkinson’s as most know little about it until it comes knocking at their door and heaven knows I am a great believer in information is power but what you don’t need is to know everything now. Parkinson’s is a strange condition with common features that affect us all differently. You will often read on the forum that it is a very individual disease. The key thing in the early days is to try not to panic, you do have time and all you both need do at the moment is get used to the diagnosis and address your immediate concerns. Strikes me you are already doing the right thing in putting exercise at the top of your agenda. Also try and develop positive outlook as this does help, not always easy but can be done. It is true it is life changing, has no cure and all that. It does not mean your husband’s life is over only different. It is slow moving in most cases so changes can be adjusted to and you shouldn’t let it stop you both following your dreams even if you have to do it a little differently. I had my diagnosis 10 years ago, I am now 62, still standing, still living on my own and have only minimal help. I am doing ok and intend to continue to do so. Give yourself a break, take each day as it comes and don’t miss making the most of today by worrying about a future that is unknown. You and your husband will find your own path to living with this, we all do in our own unique ways but it does take time. Do take care and look after yourself and each other. My best wishes to you both.
Hi Lin I can say you have come to the best place for help and support. My husband was diagnosed week before Christmas. Like you I wanted all the info I could find. Best think I did was join this forum. (I was at the point overwhelmed with everything felt I was drowning in it all )Within a very short time I had responses coming in. These as you will see are from people who know exactly what you and your husband are dealing with, feeling like because they have or are going through the same. It helps you know you are not on your own and how you are feeling someone else is too. What I see is no one judges you can truly say how you feel. I think you are doing everything you can to support him, well done you I send best wishes
Hi Cal1960. Thanks for taking the time to respond and for your kind words of support. Sounds likes you and my Husband are in a similar position, he was diagnosed at beginning of Jan. Am definitely trying to be more positive and not worry about what may or may not happen in the future. Wishing you all the best, take care and thanks again.
Hi Annie. Thank you for replying and for your kind words of support. I have followed your advice and found a local support group, also the local support worker so plan to contact both. Take care and best wishes to you.
Hi Tot and thanks for taking the time to respond. You are spot on about the information overload, I think it was just my way of dealing with the diagnosis. I’m a planner and a worrier but I know I need to change my mindset to stop worry about things that may not happen. It will be a big mindset change for me but fortunately my Husband is my opposite in that respect and is very much about the today so I’m trying to take my lead from him. Thank you for your kind words of support. Take care and I wish you all the best too.
Hello Wanderer you are quite right in what you say. We don’t always agree but we don’t judge, it is a safe place to sound off, shout, be angry, thoughtful or whatever else you need. I am glad you think that and took time to respond to Lin’s post, it is the forum working at its best and I hope you find some satisfaction in being able to help. Responding to posts where I feel I may be able to offer something helps me as much (hopefully) as the person who has written the post. It makes me feel useful and gives me a purpose. I hope you will continue to respond when you feel able, your post will I am sure help Lin. My best wishes to you.
Good luck with the groups and stay in touch x
Hi and welcome, Lin72, I agree with others here, I too overloaded on information. I am also a planner and read every article I could find and watched Michael J Fox video on his presentation to senate(?), think that was who it was to, it freaked me out. Anyway, eventually it dawned on me, to calm myself down, as I was making myself ill, and as my husband said, we can do without me being ill as well! We are now over a year on from diagnosis, though we know he had is tremor for longer that. So far, his is using his fitness to keep going, yes he has started to ache a little more, and he does sometimes have a 20 min nod in the afternoon - but we have said to ourselves, so what, he is 68 and maybe he would want to do that without the PD. He walks 3 times a day, even if he can’t manage a long one, he goes around the block. I have noticed more twitching at night but I can live with that to. Am taking each day as it comes, my only major planning that will still go ahead is to move from a house to a bungalow - if I can find one. Best wishes Lin72, this is the best place to ‘speak out’ when you don’t think anyone understands.
I’m so glad I joined up today and saw your message Lin72. My husband too has been recently diagnosed and I have been trawling the internet to get information and been out of my mind worrying about all that I’ve read.
My husband is probably more symptomatic as he has limited mobility. Exercise at a gym would be out of the question.
We waited more than 3 months to have his first consultation on 3rd December 2019 and are still in limbo with the diagnosis. He is about to start on medication via the GP as a result of letter from the hospital and that scares me because of the side effects that have been highlighted.
It will be good to talk on here with people in a similar situation.
Hi Gillyb, I do wonder if there is a shortage of PD consultants, my husbands appointment has been cancelled twice, so he’s not been seen since his diagnosis in 2018. They’ve just cancelled his April one now. This forum is where I come for reassurance and support. The PD nurses are fabulous though and it was she who sent the letter to our GP to get his medication prescribed. Up to the diagnosis my husband didn’t ever take tablets, not even an aspirin. He didn’t start medication straight away even though his tremor was quite prominent, he was a bit scared of starting on it too early. He had it in his mind the longer he takes it, the less effective it might become. Anyway, the PD nurse explained that there was no set time to start medication, he would ‘know’ when he wanted to go on it, and I have to say, she was right, about six months after she visited us at home, he said his head felt ‘bubbly’ sometimes and that when he walked along the road, he felt a little like his feet weren’t his. So he started the tablets and he says he felt much more stable. The bubbly head thing flares up now and then, we have no idea if this is a normal symptom, but he just has a little lay down, it goes off and then he bounces back. Just a FYI -Not everyone has a side effect, we’ve been lucky so far. The pills do not take away the tremor, only when he is totally relaxed does it stop (usually in his sleep in his case).
Hello to all newish comers to the forum of which there have been several joining in this thread. If I might just make a comment here because issues and I have to say fear of medication side effects are a commonly raised concern. It us up to each of us to decide when or if to take meds and that is not an easy decision particularly when faced with the list of, let’s be honest, quite awful side effects. There are a few things to bear in mind, yes you may get some difficulties further down the line but equally you may not. The medication when you get the balancing act right can bbe very effective and give you back a quality of life that has perhaps been ebbing away. For me personally it was not just a question of should i not take meds or delay starting them because of the side effects, rather it was am i prepared to sacrifice quality of life now, miss the pleasure of life today because of an unknown future that may not be my lot? If it is I hope I can continue to use what I believe is my strongest med, a positive mind set. I try not to dwell on what has changed, some say lost, but can I do it differently, sometimes it’s finding something new whatever it takes to make the most of today. For me tomorrow, next week, next month, next year will be what it is. I may not be able to change that but I can change how I feel about it. Don’t get me wrong, it’s not always easy, I have my moments but basically I just get on with life as best I can and I will deal with whatever my future is when it becomes my present. That is my way. You must all, whether the one with Parkinson’s or supporting someone, find what works for you, that can take time and keeps needing a bit of tweaking like shifting sands. But you also have a life now, today won’t come again. I encourage you all not to forget today for a future none of us can know. I write this just as food for thought, nothing more and I hope all you newbies find your way to live with Parkinson’s in your life soon. It changes things, it is not the end of the world unless you let or want it to be. My best wishes to you all.
It seems we are very much on the same journey. My husband (53) was diagnosed just over a week ago, the consultant had no doubt and confirmed before any tests were run. My husband has since had blood tests and mri and we are back to the consultant in a weeks time. DATScan is the next step.
I have done all the reading up and research, husband has spent 5/10 minutes on this site and that’s all. I’m not offering any further information unless he asked, which he hasn’t much. I need to talk about it and husband wants to wait until he sees the consultant again, which I’m finding hard. We haven’t told anyone yet at his request.
Keeping positive, but that can be exhausting!!
Thanks Wiffey, it’s reassuring to know that my fears may come to nothing and that I/we will be able to get support from this forum. I’ll update on how the medication goes, we’re starting tonight or tomorrow.
This sounds like my story I was diagnosed in 2007, I also had a left hand tremor with no other symptoms. As far as I am aware I still have no other symptoms. I knew it was PD as my Mum had had it albeit when she was in her 60’s. She passed away when she was 82. Anyway I was given the option of having the DAT Scan but decided not to because I thought there are other people who needed it more than I did. Also I decided not to take any medication in the beginning. My husband kept on at me to have the Scan so in the end I did and the result was what we already knew PD. I didn’t take any meds for about 2 years then the Consultant and I decided to start because he said it is better to start taking the meds earlier rather than later as you won’t get back what you have already lost. At least having them earlier it hopefully controls the PD and slows it down.
I consider myself very lucky to have a Consultant and a Specialist Parkinson’s Nurse. I have had both of them right from the beginning and when my husband and I moved from near Kew Gardens to Torquay in Devon where I now live, I still have the same Consultant and Specialist Parkinson’s Nurse, so every time I have an appointment I have to go up to Charing Cross Hospital in London. When I was diagnosed it didn’t shock me or upset me the only thing I did was write out a “living will” which is just instructions to my son. I go to an exercise class for people with Parkinson’s. Also I have joined an Area Parkinson’s Group and made friends with some lovely people. I go out for a walk everyday and I am fairly easy going which I think all helps as I have not really changed in all that time, I take each day as it comes and if and when something changes I will deal with it. I think nothing is going to change we have what we have so just get on with living each day as best as you can because if we don’t time will pass us by and we will lose all the time we are able to do things.
I hope all this makes sense.
Thank you for posting and for all the replies because it’s helpful to me too. I especially get that Tot says about not worrying about future but understand your need to plan.
Everyone reacts in different ways. We decided very quickly not to look anything up for the freak out reasons you refer to (we’re six years in and I’ve only recently felt ready to join this forum).
We told our neurologist that we would only know what he decided to tell us and he tells us stuff on a need to know basis. Everyone’s experience of PD is different so personally I don’t want to worry myself seeing what could happen because it may not happen to my husband. Plus in any event it all happens slowly so you have time to adjust to each new thing.
We have a few basic rules on how we deal with it
- Don’t look stuff up
- Vigorous exercise almost every day
- Communicate well (although I think we’re both selective out of consideration for each other)
- PD is my husband’s disease but it affects us both so I go to all appointments with him. I consider this vital and the neurologist always includes me
- Get on with enjoying life while we can as much as we can. I agree with others, it’s a lot about mindset and I’ve had to work a lot on changing mine from planner to enjoy the here and now. Not a bad thing.
I’ve recently decided a new one just for me, I’m going to get some counseling because I’ve had some other very difficult things to deal with in my life and it seems a good idea because so many of my friends are saying I should look after myself too. Look after yourself too!
Hi, the Datscan should be definitive. My only symptom to begin with was a tremor in my right hand. The scan showed up the brain abnormality clearly.
As regards freaking out, it is a manageable condition and might take years to become a real nuisance.
Another early symptom is a poor digestive system. If your husband has that it is worth immediate attention. The latest research all points to the gut as a major player in the disease- not just a symptom of it. The NHS had nothing to offer me in this area other than ongoing over-the-counter pacifiers that do not get to the root of the problem; so I sought a professional nutritionist privately. He did some tests and gave me a course of supplements to correct imbalances in my system. This has worked wonders. My digestion is better than it has been for many years.
This website has plenty of good ideas for you to take charge and do positive actions beyond the basic symptomatic treatment which is what the NHS has to offer. Happy hunting! JCPB
Thanks for those wise words Tot.
For me it is difficult starting out on this new way of life and your outlook makes a lot of sense.
My husband also has CMML (chronic myelomonocytic leukaemia), diagnosed in October 2018, which makes his case more complicated.
Most days I get on with looking after him but some days I mourn the things we used to do together and how easy life was.