Spouse of newly diagnosed YOPD with walking problem


#1

Desperately trying to support my husband come to terms with his diagnosis of YOPD and with other medical issues which may or may not be related.
His biggest issue is his mobility (or lack of) and this is getting him (and me) very down.
His walking is deteriorating rapidly and nobody can tell us why.
His right knee doesn’t seem to want to straighten or take his weight so he walks with a flexed knee.
His Neuro team are convinced it isn’t PD related and the Orthopedic Consultant and Physios are telling us that there is no physical reason.
He’s had numerous blood tests, scans, x-rays, nerve conduction studies etc but still we are none the wiser.
We did wonder whether it was caused by the medication but Neurologist is saying not and looking back we think it may have been starting just before his diagnosis, although it did become an issue a week after starting the meds.
We are still awaiting a Rheumatology appointment but hopefully that’s coming through soon.
This has been going on since February.
He’s exercising, doing physio and clinging on to his job but if we don’t get some answers soon I truly fear that one of us (or both) will be needing psychiatric help. He’s 53.
Any tips / advice / similar personal experiences etc greatly appreciated. THANK YOU


#2

Hi worried wife,
Im 52, diagnosed 2 years ago. Like most people i had symptoms for a few years before. What sent me to the neurologist was when i started dragging my right leg. All my weakness is down my right side. I know your husband is exercising but i find PD warrior exercises very helpful. They can be found on YouTube unless you find a neuro physio traiined in the exercises near you.
I know its hard to tell people but sometimes lt can relieve the stress of trying to act ‘normal’. Stress makes the symptoms worse.


#3

Thank you for your response Divine1.
Yes, I agree with you about the PD Warrior Exercises. The Personal Trainer he sees has also got PD and the exercises are all aimed at improving the symptoms of PD. He’s only been twice so far but has really enjoyed it. We both feel very confident that this will help him. Have you had much improvement from the exercises ? How is your walking now ?
There’s a very good Neuro Physio at the hospital where he’s being treated but we’ve only seen him twice since he was diagnosed in Feb. The local private Neuro Physio is extrememly expensive. I was hoping that there would be some sort of intensive rehab / Neuro / therapy course he could be put on by the NHS but he hasn’t been offered anything like that.
He has started to tell people but only a very small select group. I’ve tried to encourage him to be more open about it but I’m not having much luck. He’s very self conscious about it and is only telling people when he feels he has no choice but to. I’m trying really hard not to add to his stress.


#4

Hi


#5

Hi again.,
Im not sure if my walking has improved but it has nt got worse. I find they are just as helpful for my mental health. You do have to do them several times a week. As for telling people, its definitely up to the individual and what they feel comfortable with.
Its all new to you both and takes time to digest all the information thrown at you. You sound like you’re doing all the right things.
Ive only seen nhs physio twice. Do you have a PD nurse?