So the day has arrived. Got the phone call from the consultant today to say that hubby has parkinson’s. We knew it was coming but still a shock to the system. We have 2 teenage girls at home so we all had a chat and a good cry and are just trying now to get out heads straight. Consultant was very good and is getting in touch with other consultants and a movement team as hubby is only 43. Emotions are all over the show. Scared, relieved, worried, hopefull it’s crazy!! The plan now is to just move on as normal and take it as it comes. This forum has been great the past couple of months while we waited for the scan and results. So good to get advice from people who are experiencing PD and not just the medics. Here’s to our new life and whatever it throws at us x
At least you know what you are up against now. You sound like you have the right attitude so I am sure once things settle down you will all manage just fine. The key thing to remember just now is that for most of us Parkinson’s moves slowly and nothing much immediately changes, you have time to get used to the idea and decide what you need to know just now. I would caution against an all too common urge to read everything in sight, it rarely achieves much except giving information overload where you can’t see the wood for the trees or worse you’ll frighten yourself with all the negatives that come with Parkinsons. It is true there are a lot of motor and non motor symptoms, but as you will hear over and over again it is a very individual condition affecting everyone differently. The initial news can be devastating, a shock and bring on all sorts of emotions as you have found, but it is possible to have a good quality of life and live well with Parkinson’s for many years. Don’t give up on your dreams or plans you may have to do things a little differently but often there is a way. And as much as you can, try and stay positive, not always easy I grant you but I firmly believe it makes a difference. I wish the whole family well and you know where we are if us the forum can help.
Thanks you for the advice. I did spend a lot of time on Google and scared myself witless then I found this forum and realised information from here was much more sensible than some of the posts I was reading online. I have posted before when all this started and the support has been amazing and for that I am grateful. Thanks for your honest reply. Health and happiness to you x
Just joined this Forum. I am newly diagnosed and feel I am in a wilderness. Diagnosis confirmed over telephone. Medication prescribed remotely and Community Nurse not yet been in contact. In present COVID situation it is understandable.
It has helped me to read your posting. Most reassuring and sensible and good to know others feel similarly. I must keep positive and enjoy life and of course be patient.
As this is your first posting, we just wanted to say hi and welcome to the forum. While we will not minimize the struggle that comes with a Parkinson’s diagnosis, you can rest assured that you are not alone. Please make use of the wealth of information on the attached website, which you can easily search for anything that may be on your mind, as well as our free and confidential helpline at 0808 800 0303. The advisers there can help you with local resources, understanding medications and side effects, and just lend an ear when you need to speak with someone. Along with our friendly, wise, and supportive forum community, you are surrounded by people who want to help.
All our best,
Hi moira. Its been nearly a year since hubbys diagnoses and things haven’t really changed much. He has good days and tired days. Thankfully he can work from home and take it easy when he needs to. It’s still all new to us and we have days where we are scared of the future and days where we can laugh about it. Being honest and open is the only way to deal with it. I hope you are keeping well and have a good support network of family and freinds around you. Keep positive and stay active x
Hello Moira, just stopping by to say welcome. The diagnosis is not easy at the best of times but the impact of covid, as you have found, doesn’t exactly help. Feeling that you are in a wilderness is a very apt description and although may not be a commonly used word, a wilderness is very commonly what people feel when newly diagnosed. I get the impression and forgive me if I’m wrong, that you are not sure what happens now. The short a answer is nothing immediately changes, it feels like everything should be different but that is not the reality. It takes time to sort out treatment options and in most Parkinson’s is slow moving so there is no immediate urgency for you to do anything or change any plans. Good to hear reading the posting helped. It may be worth your having a look at some of the other posts from people who are newly diagnosed or struggling a bit and replies from forum members, since your face to face contact is at best restricted at the minute. It may give you a sense of the bigger picture, a bit more clarity if you like so that the wilderness doesn’t feel quite so big. Take care, let us know how you are getting on.
Hello Shonab,I can relate to your posts …a year in July my husband now 52 was diagnosed we have 2 kids in their early 20s. Hubby not on meds yet but trialing the mucuna LDopas to see if they help. I felt/feel the same emotions as you and when people ask me how he is its a very up and down response. One day he is fine another he is so flat its awful, anxiety the worst part. It’s hard for PWP but I have to say it’s equally hard for us. Watching someone changing, going through this that we love and there’s nothing we can do to make it better absolutely tears me to bits…we have to try and be strong for them and our kids who are also finding it hard. We laugh about it and we also cry about it this is certainly a roller coaster ride and I just wanted to pop by and say your not on your own x
It sure is a roller coaster!!! Some days it scares the hell out of me when I think of the future but then I have to take a breath and tell myself to chill out. Hubby is on madapar 3x daily and a slow release madapar at night. So far so good with no side effects. We have a fantastic PD nurse who is always on hand to answer any questions or worries we have. She’s worth her weight in gold and we are blessed to have her support. It’s good to have the forum as well. Some great advice and lots of support .
Yes , I can also relate to the part of scaring the hell out of you…thats how I feel. If he does something differently or acts different, I feel myself crumbling and it kills me,but have to try and put on a brave face for all. On other days he is fine and I’m fine …I think the worst thing is,we do not know what’s ahead and what the future holds. I have to accept that is out of my control, and try taking every day as it comes…again sometimes.easier said than done x