Can I 'insist' that my husband sees a specialist?

[2024name]

I have posted about this elsewhere, but I wanted advice about a specific course of action pertaining to a possible health issue.

My husband (64) is in a care home after spending a significant time in psychiatric hospitals following an episode of very poor mental health.

However, he also has some alarming (to me) physical symptoms. Primarily, he shuffles when he walks (tiny steps in which he does not lift his feet much from the ground). He stoops. His face seems rigid (expressionless). His nose runs constantly, He is chronically constipated. His voice is very weak and he has lost a lot of weight. He is now beginning to mention difficulty swallowing (just pills and things at the moment) and this is worrying me.

The care home have told me these problems have arisen from his profound anxiety e.g. he has become scared of doing anything and this has led to a deterioration in his muscles etc. I have found this hard to believe.

A short time ago, a consultant called me to ask about my husband's symptoms, and how long they had been present. I was able to tell him that the 'shuffling' had begun about two years ago, but had become much more pronounced within the last year.

The consultant said he suspected my husband has Parkinson's disease, and he went on to recommend that the anti-psychotic medication my husband was on was cut down to see if the symptoms abated a little. However, if his hypothesis is correct, the PD probably began before my husband went into hospital.

My issue is that I feel there should be a referral to a movement or neurological specialist. The more I find out about PD, the more my husband's profile fits it. Even the anxiety and hallucinations could have been part of the PD.

I just want to know if I should or could insist that my husband sees his GP with a view to being referred to specialists who can assess for PD? I have e-mailed or spoken to the home about other things (always politely), but I do not want to come across as critical of the care my husband receives.

Yes absolutely. I would tell them you are going to call the GP as you are worried about your husband’s health and want him to be checked over. Make sure you attend the appointment too so that you can tell the GP your concerns and that you think a referral needs to be made to a specialist. Mention to the GP when you book his appointment what has been said previously about PD.
if you need to go through the home then speak to their head nurse and say you want a GP appt and you want to be present for it. The swallowing issue is particularly worrying.
You are not criticising the home by asking for a Gp to see him.

Yes it does need checking, depending on the meds he’s on that might muddy the process because some older psychiatric medication have side effects the same as PD symptoms.

There are other diagnoses that could also lead to these symptoms. I am not a doctor, so I'm not going to start chucking out suggestions, but a thorough medical review may be appropriate.

Yes to seeing the gp who probably makes home visits to the care home periodically, but as to whether to refer to hospital doctors if the diagnosis is obvious, that's tougher as the change of routine, the hospital environment etc will be upsetting and it may not make any difference to treatment

I’m a MH nurse. Is your DH still on antipsychotics? Broadly speaking, people with Parkinson’s have too little dopamine whereas people experiencing psychosis have too much. Antipsychotics block dopamine receptors to decrease the amount of dopamine taken up and so reduce psychosis. This can cause Parkinson’s like side effects if the amount of dopamine taken up drops too low-and is why individuals on long term antipsychotics may shuffle or drool. In practice, this means that any specialist that sees him will want his system completely free from antipsychotics before any real diagnosis can be made. I hope this makes sense 🙂

Thank you for these very helpful replies. I think I will ask to speak to the manager of the home. It may well be the case that they are waiting for a certain period to see if the reduction in anti-psychotic medication makes any difference. However, the swallowing issue does need to be addressed.

I will be visiting my husband today, so I will ask to speak to the manager when I come.

He's lucky to have you to speak up for him and look out for him OP. I hope it gets resolved soon.

Look at drug induced Parkinsonism and see if you think it fits.

Antipsychotic medication can be brutal on the body. I’ve seen it in my family. Fortunately when they came off their meds, the physical symptoms improved massively. He had similar with the shuffling, runny nose etc.

Thank you again for these replies. I have looked up drug induced Parkinson-like symptoms, and most sites do seem to suggest it is primarily motor symptoms that present in DIP. However, I know that one of the blood-pressure medications can have a side effect of a runny nose. Yet the 'shuffling' started before my husband went into hospital, the hallucinations are something that my husband has never experienced before (he has battled with anxiety disorders since he was a teenager), and the apathy is something that began before hospital admission.

I know my eldest son was on anti-psychotics for a while, and he developed a leg tremor that resolved itself once the medication was stopped.

I just have this awful feeling that my husband has been misdiagnosed. I am sure I will feel better once I am reassured that there is a plan in place, and this does include investigations for other conditions (e.g. PD).

What speciality is the Consultant who has seen him already? Was it a Psychiatrist? He may not necessarily require referral if he remains under the care of the Psych.

You do know some Ayurvedic medicines have been found to contain lead, mercury and arsenic in harmful amounts?
There is no cure for PD, just management of symptoms which can be variable depending on the severity of the PD.
Please don't peddle unsubstantiated shite about cures. It's incredibly cruel giving false hope.

Op yes please talk to your GP, whilst there is no cure, there are therapies (pharmacological and physio/salt/ot) which can all help ease symptoms if it is PD, there are other things which can cause similar symptoms, and as pp mentioned upthread, some antipsyc meds can cause side similar side effects.
Hope you get some answers soon.

Swallowing wise - your husband needs to see a speech and language therapist who can do a swallowing / dysphagia assessment and management plan. You can usually self refer into the service for this.

Often it will come from the move,ent disorder team who are managing the overall care for PD patients and either the consultant or specialist nurse will make the referral.

Dysphagia and voice loss in PD is very common but there are things that can be done to help.

Thank you for these replies. The consultant is a psychiatrist, which is why he was able to organise a reduction in the anti-psychotic drugs. However, he suspects the symptoms (possible PD) began before my husband received the medication, so, I believe, further investigation is necessary.

I could not get hold of the manager when I visited yesterday, so I have sent an e-mail with all my questions, to be forwarded to the manager, today.

Hopefully, I will get to know in more detail what plans, if any, are in place for further assessment.

Has your husband lost his sense of smell? It is often a symptom of PD. I hope you get some answers.

Yes, his sense of smell has deteriorated, I also managed to contact the manager. They have reassured me that PD is being considered. The plan is that he will see the GP again later this month, when his condition can be reviewed in the light of the reduction in his anti-psychotic medication.

His symptoms seem to be escalating. A tremor is now observable in one of his legs, and he is very stiff. He told me that two members of staff helped him to shower this morning.

The manager is asking the GP to see my husband as soon as possible, because his symptoms do seem to be getting worse.

Parkinsonism is a side effect of some medication too, so it would be very reasonable to ask for a Dr review.

So they have reduced his anti psychotic meds and his symptoms have increased?

Antipsychotics caused my father to behave like that.

Just an update. My husband's medication was stopped for a short time and many of his psychotic symptoms returned, so he was put on a different antipsychotic.

The new antipsychotic seems to be controlling the worst of his MH symptoms, and his Parkinsonian symptoms have gone, so the consultant psychiatrist is certain the neurological symptoms were a side effect of the first medication.

He still shuffles a little, but this is more like the shuffle he was developing a couple of years ago.

Therefore, I an certain he has not god Parkinson's Disease, which is something of a relief, but it is obvious he has a serious mental illness that requires medication to control it.

that is good that you got some resolution

That's really great news, OP. Good for you for intervening