My name is Tincy Jose and newly joined to the forum on world parkinsons day. I works in NHS. I am 43 years old and I have been diagnosed with moderate parkinsons disease unfortunately in September 2019 .
I have been perfectly healthy. I haven’t had many symptoms. What I initially felt was whilst walking my right foot step was louder than the left one but which I was noticed whist walking in the hospital corridoors especially in the evening when it’s quieter. Few times I looked at the back of my shoe to see anything stuck or not. I was thinking in mind to go to gp but then l thought that is not a reasonable cause to go. Then I felt while writing my hands jerked few times , that also I thought may be because I am rushing to write whilst at work. But I was on a night shift on 2nd of June 2919. Once I walk ed past my colleague who stopped me and ask ed is anything wrong with my leg. I said I am not sure, she said the same I was thinking and insisted me to go to gp the next day itself. So I did take it on board and made appointment with gp and realised I am dragging my leg a bit as well whilst walking but all the examinations were normal. But she said I needed a neurology review and sent me to ambulatory emergency care as gp referral to neurologist can take months to happen.
In AEC I have been seen acute medicine consultant who thought it could be MS and done all the screening which all came back normal, MRI head was also normal. Then I had to wait for neurology appointment , and I was on sick leave whilst waiting for the appointment as per advice.
Whilst relaxing at home I experienced tremors on my right arm , it’s experienced only at rest. One day I was reading BBC news and I read a news about one of the Chaser Dr.paul sinha (sinnerman) diagnosed with PD. Then i found his blog about his PD. Whilst reading that I doubted myself. But I didn’t forcefully looked for further at that point. But as days were going I was able to realise that I am heading towards this. After 4weeks wait I managed to see the neurologist who wanted to start me on Levodopa straight away which I wasn’t very happy. He sent me for DAT SCAN which confirmed I have PD. I have been told the result whilst I was at work as the result was not ready when I had the consultation. Even though I knew this is the outcome but it was like a bomb on my head. I went to my matron and burst out in tears and the positive words and support she has given me was incredible.
I have been started on Ropinirole 2 mg and then increased gradually and now I am on 6mgs and also on Rasagiline 1 mg .
I am lucky as I work in the hospital. I have a great supportive team of colleagues (But not everyone knows ). I am being positive and keep going. I have taken promotion after the diagnosis. I was a staff nurse, now past 7 months I am working as a junior sister in AMU.
Its hard for my husband to accept but this is life isn’t it ? I have two boys , they are 13 and 9 yrs old , I haven’t told them yet. Elder son is autistic that’s my worry. But determined to go as long as I can. Over thinking isn’t worth, time to remain positive and fight.
Sorry it’s been bit long. But really enjoying being here.
Hi @Tinku and welcome to our friendly forum. I’m sorry to hear about your diagnosis and I’m sure that having a child with their own challenges adds to the stress you will be feeling. However, it does sound like you have a great attitude. Don’t forget we’re here to help answer any concerns you may have, and offer you support. I’m sure that you’ll hear from other members shortly.
Hi @Tinku, Welcome to our world !! You’re in the right place work wise and i’m pleased that those who work with you are all supportive. At least you’ve still got a job and the respect of those around you. Adopting a positive attitude is the way to go, hopefully the disease will be a slow burner but as you will read, we’re all different on here. So keep doing what you’re doing everyday. You have Parky, it doesn’t have you and so long as you move forward with this in mind you will learn to rise above it like it is a minor irritation.
Tell your husband that there are loads of people with the disease and we all have our coping mechanisms. You’re going to have to tell your boys, perhaps now might be a good time but reassure them that it is nothing to worry about. As i’ve said to others on this forum, you will know in yourself when you need to adjust what you’re doing on a daily basis. It may be a good idea if you ask some of those who work closely with you if they would let you know if they see any differences in you, for warned is for armed, at least you will know. If these drugs don’t work then there are plenty more to try, it is trial and error but hopefully these will work for you. There are advances in technology that before too long there may be a cure and we will all be happy.
Two things before I disappear back into the ether, there’s never any need to apologise for the length of your post. You had a lot on your chest and letting it go on here is the right place to do it. You’re never alone on this forum, there’s always someone about to help so just bear that in mind and feel free to talk on any subject you like, we’re here to help where we can. Now go and enjoy the rest of the forum. You have my deepest respect working in the NHS, take good care of yourself, stay safe.
Hi @cruisecontroller
Thank you for your valuable reply. It is really motivational. Me personally a fighter with positive minded . Those who knows me well always says i am a strong character, I know that’s why I got this to fight for. I started the initial step to tell the boys about PD. I will share that experience once I fully informed them. As I work in the NHS , in an acute medical unit we always gets acutely ill patients , when I see the patients with PD it’s breaking my heart , but then I will think everyone is different. I said several times to my colleagues when we see patients with same age of us with long list of medical history , we are blessed… My usual policy is get on with it if you come across with problems instead of over thinking about it and wasting your time. Thank you so much for for your valuable advice.
Take care .
Tincy.
Have you seen this ? It’s healthcare professionals sharing their story working in the NHS with PD, done for world Parkinson’s day 2021, you’ll see some of your colleagues still working after 12 years. I was diagnosed at the start of this year aged 43, still off work due to the nature of work I do they want me to start medication and pass lots of occupational health assessments before I’m allowed back but we’re hoping I can get back in the summer. I’ve also worked in the NHS so I found this video very uplifting
@Tinku Hi again Tincy, Just in case you didn’t see the above post I thought I would bring it to your attention as the poster didn’t send it like direct to you. Good to know you’ve started to tell your boys about PD, it will make life easier for you and your husband. With you being on the front line you must be under an awful lot of stress with Covid being ever present and you facing peoples trauma who have this horrible disease, plus you being extra careful to not contract it and pass it on to your family and friends. Take care and be sure to stay safe.
Hi
Thank you so much for sharing that inspirational video. It is really uplifting isn’t it? That gives me an idea to look around in my hospital to find colleagues who suffer …
Hope you are getting on well with your medications. Hope that you will be able to go back to work soon.
Thank you again and take care.
Tincy .
Hi @cruisecontroller
I have watched the full video and it’s really inspirational isn’t it? Thank you for forwarding again.
Even though I work in front line I didn’t work in covid wards. As soon as the covid hit the NHS , there was risk assessment done and I was not allowed to work in the covid areas. But you know I looked after our hospitals first patient and I only transferred him to itu. I looked after few more patients as not everyone comes with symptoms and when the screening swab results comes then only we will be knowing. So far I have been ok , not had any symptoms, thank God. But I had antibody which was surprising. Any way hope things will settle down and better days are coming…
Thank you
Tincy.
Hello there can’t add much to what’s already written but in case you don’t know I have it on good authority that there is an excellent group on Facebook if you use that called autism parents chat and just thought you might like to see this verse .
Best wishes
Tot
