Newbie - Husband with PD

Hi, I’ve joined the forum as my husband suffers from PD. He was diagnosed just over a year ago but his symptoms do not seem to be getting any better, in fact he has gone downhill very quickly, shockingly fast really. He is on medication but I am really at a loss as to what to expect from the progression of the disease and symptoms associated with it, the drugs, etc. We see the Parkinson’s nurse regularly and the consultant once a year. I have voiced my concerns over the past 12 months and the nurse has upped his meds but he seems to be deteriorating to the point where I wonder if there is something else going on. He has the tremors and stiffness but also his cognitive function is not at all good and hasn’t been for quite a while. He has recently been in hospital and was diagnosed with a clot on his lung. He now has to take blood thinning meds but he also has an incontinence problem which he is waiting to see a urologist for. Although he used to have the odd “accident”, he was not this bad before he went into hospital. My concerns are that his mobility is awful. He is now virtually housebound and his mental capacity is very bad. It’s almost like talking to a child to get them to tie their shoelaces for example, you have to tell him over and over again how to do things in the most comfortable, easy and safe way. Family and friends are shocked by how much he has deteriorated in such a short space of time. I have voiced my concerns to various healthcare professionals and the PN gave him a memory test which he did reasonably well but she said he does have a problem although there was no follow up or suggestion of any further tests. I’m completely at a loss as I have to work full time and he needs more and more care. Is this usual in the progression of the disease or should I get him back to the GP/Nurse/Consultant and insist on some sort of scan or further tests. Sorry for the long post!

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Hello @nanag, it’s a very worrying time for you at the moment and you sound as if you are dealing with it on your own. Do you have any emotional support challenges which can help? Perhaps joining a local PD group in your area might help to talk to other people who are going though the same issues.
I care for my mum who has advanced PD but thankfully no cognitive problems (as yet.) She has fallen recently and now is very unsteady when standing. But apart from that everything else is declining at a ‘normal’ rate. I’m lucky compared to some. It’s still tough though.
I personally would speak to your/his GP first off, the PN should have copied your husband into the letter she wrote to them so they should be in the picture with regards your husbands decline. Ask for more tests and reassurance and if at first you get no where…repeat! Do please think about getting some support if you haven’t already as it’s very hard coping alone and unfortunately it will only get harder. Big hugs and love Debbie

Hello nanag. I’m sorry you are going through this but such rapid deterioration isn’t typical and there may be something else going on, one of the so-called ParkinsonsPlus conditions rather than PD itself perhaps. Definitely get in touch with your husband’s neurologist or GP and ask for a reassessment as you both clearly need some answers and more support.

It isn’t unusual for a PD diagnosis to be later revised. My husband was diagnosed with PD 15 months ago, supported by a positive datscan, but as things evolve it seems he is likely to have a related condition rather than PD itself. Only time will tell as there isn’t a definitive test but he is being regularly reviewed by a neurologist.

Look after yourself too, I know how hard it can be dealing with cognitive issues on top of the physical ones. Not all dementia can be diagnosed with standard memory tests either, my husband’s neurologist told us that lewy body dementia is very different from Alzheimers for example and needs diagnosis by a specialist.

Hi,

I’m sorry to hear of your experiences lately, it must be a really stressful time for you - you mentioned that you’re still working full time which must be adding a lot of pressure so if needed and if you can do, take some well deserved time off.

I’m sorry to hear your Husband’s symptoms have not been alleviated since being diagnosed, it definitely sounds like a review with the specialist would be helpful - is your husband having physiotherapy to maintain muscles and movement? I wonder if there could be physiotherapy support that could be home based so it might be worth enquiring about this with your GP or local Parkinson’s group or specialist Nurse.

I really hope things improve for you all soon, best wishes to you and your family,
Laura.

Hello Mountainair
I was very interested to hear that your husband’s diagnosis had been reviewed after 15 months and that he was found possibly to have something different.

My husband has struggled on with a poor response to the regularly used Parkinson’s medications for 3 years but is still being told to keep taking it. His original condition - ie weak hands and fine manipulation - seems little changed and the only deterioration in his health seems to be linked to the Parkinson’s medication which makes him very listless and gives him frequent dizzy spells.

What was it that got your husband’s situation reviewed? Was the new diagnosis treated with the same medication?

Exactly what I would have suggested, Mountainair. Such a rapid deterioration could suggest what you mention. Wishing the OP all the best in their quest for a definitive answer.

Hello Rosesared. My husband has not started on medication as we agreed with the neurologist to hold off initially as it isn’t effective against my husband’s biggest problem which are balance issues. He has since had a further couple of falls, another fracture unfortunately and his intermittent cognitive issues including visuoperceptual problems & at least two hallucinations of animals are not usual this early on in PD according to his neurologist, and what we have read. Although she was never formally diagnosed, his mother also died from what was probably a very rapid DLB. Only time will tell how things evolve in my husband but meanwhile we are making the best of the good times.

As I understand it, if medications do not help the symptoms of PD in the early days the diagnosis should be reviewed as it is unlikely to be PD. I would ask for a review by your husband’s neurologist. It’s a fine balance with symptoms versa drug side effects & doesn’t sound as though the balance is right in your husband’s case even if the PD diagnosis is right. I hasten to add I am no expert!

Thanks for your helpful response Mountainair. It sounds as if your husband’s new diagnosis was not what you had hoped for. I wish you all the very best for those good times that you still enjoy together. We’ll try to find a better balance of meds but it is difficult to make the system work for you. I know the medical staff are overwhelmed with the demands on them and it seems a very long time between appointments when things are not going well!