I’m Stuart, 51, living in Blandford, Dorset. Back in October I saw a specialist as I was having joint pains in my hip and just felt something wasn’t right. I was dropping things, had brain fog and was generally aching and tired all the time. Fast forward a month and was diagnosed with AVN, meaning I needed a new hip and after having and additional DAT scan was also diagnosed with Parkinson’s. I needed to focus on getting my hip sorted before dealing with the Parkinson’s. This was done 8 weeks ago so I’m now a lot fitter in that respect but now the reality of a Parkinson’s is starting to sink in. My dad has had it for 15 years so I have some experiences but I want it to be my Parkinson’s and not an joint effort, which sounds weird but my circumstances are different to his. I’m due to go back to work in February, I’m a Supermarket Manager, but I’m worried about the long term affects on this. I have an initial appointment booked with my nurse in a month and am currently taking ReQuip 250mg tablets 3 times a day. I am suffering with my sleep and fatigue but not sure how much the split is between Parkinson’s and Hip recovery.
Hello Stuart. H
Welcome to the forum. Glad to hear you’ve got your hip sorted even if not fully recovered but now you’ve turned your attention to your Parkinson’s. You are quite right in that you will have some idea what Parkinson’s means because of your father’s own diagnosis, but you are also right to think of it as your Parkinson’s and not a joint effort. That it is a condition which affects everyone differently is something you will hear time and again. We may have similar symptoms as others but the impact and way it affects you will be unique to you.
The early days can be a strange and difficult time. Emotions can be all over the place, treatment plans can take time to settle, one minute you are worrying about the present the next the uncertainty of the future, decisions to be made - do you tell people and what do you say and so on. Best advice is just give yourself time to get used to the diagnosis and what it means to you. In most it is a slow moving condition so you have time and have no need to rush headlong into anything. Think about any questions you may have and note them down so you don’t forget anything at your appointment and you can of course, post here on the forum.
Although you have your father’s experience to draw upon as you wish this is happening to you and there is a subtle difference in that, moving from what was in effect a vicarious experience of Parkinson’s to your own first hand experience. You will come through this early stage and find things do settle - we’ve all been there and lived to tell the
Let us know how you are getting on.
Best wishes.
Tot
Sounds like tough times - hang in there and it will seem better soon.
One thing I would suggest is having a conversation with your employer - I worked for 5 years after diagnosis, but only because I sorted out some flexible working.
Thanks for your comments. I have a meeting scheduled with work for next week to discuss things going forward. While I’m keen to do my job fully I don’t want to be a position where I’m struggling. Hopefully we can get some middle ground. They have been great so far so everything is hopeful.
HI Stuart,
I would say the same as the others have said. this is your journey and it takes some time getting your head around. You sound well grounded, so forward you go
Esme x
Hello Stuart
I think that is a very healthy attitude to take - you are not your Dad and whilst you say you have some understanding - no 2 peoples journey with Parkinson’s is the same snd it is right that you concentrate on yourself in obtaining the best you can for yourself.
In relation to going forward with treatment and information for your Parkinson’s you will be (hopefully) seeing snd being supported by your consultant and their team for a long time; are you happy with them remember you can change. Our local neurologist was an obnoxious person and we asked our GP to refer my husband to a London Hospital that is bench marked in the treatment of Parkinson’s. Yes it does involve a car and train your ey to get there but 100% worth it.
My husband continued working and felt it gave him purpose and he very much wanted to continue, to say nothing of still having a mortgage to pay. There were times when his medication needed adjustments snd having access (via email snd or telephone to a responsive Parkinson’s nurse) helped to facilitate this.
As others have said speaking with your employer will hopefully allow for some fluidity and changes where necessary. My husband was office bound and his employer accommodated a shift in his working hours so he could commute at a less busy time etc.
I wish you well, Regards Jane
Currently I feel very comfortable with the medical people that I have seen so hopefully that will continue. I’m determined to be in control of things as much as possible although in this early stage there are definitely scary moments.
That is a big step to transfer to London but the fact that you took that big step because you felt it was important is great.
One thing I’m learning is that it’s a long journey ahead and one I’m determined to make the best of.
Hi Stuart, like @JF I worked for 5 years post dx and had a reasonable adjustment plan in place. It was reviewed regularly and further adjustments were added. I took a sideways move24 months ago to cut down on extensive travelling which was essential for my job. But eventually chronic fatigue and brain for set in and I took ill health early retirement in September 2021.
Good luck with your work meeting and I hope they can find and implement some reasonable adjustments for you to enable you to carry on working.
