Hubby not yet diagnosed but it’s looking like pd

Hi, my hubby aged 58 started with a index finger and thumb tremor 3 years ago, shortly after his hand and then this year his leg, tongue and mouth, all right sided. He’s just had an MRI and we are waiting to see what comes of it. He has lost sight in his right eye due to optic neuropathy and suffers blinding migraines on a daily basis. His memory is poor and looses track of his conversation. He is suffering constant dizziness for which is being treated for vertigo but no medication is helping it. All this is hard for both him and me to cope with but even harder is his total apathy. I realise he feels totally rubbish but he literally just lays down or sits and looks out of the window. He use to be so loud and talkative but even if I take him out for a cuppa which he loves he doesn’t engage in conversation anymore, he’s not interested in our children or anything.
If this husband eating disease is pd, will the appropriate medication help all this or is this something We will just have to adapt too. ?
I’m sorry if this sounds like a moan off I’m so worried for him and feel so very alone. I have family that would support me but I don’t want to tell them much until we now for sure.

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I would try and get your husbands gp to refer you to a specialist. They if they suspect pd ask for a dat scan to confirm.


Hi @Melwatson1 and welcome. I’m surprised your post hasn’t received more replies. It sounds like PD to me, but I am relatively new to this world (diagnosed 2019) so certainly no expert. What I do know is that the outcome of my MRI was that I probably had PD - and a DAT scan (very similar to MRI) a month or so later confirmed it. I recognise some of your husband’s symptoms in myself but I have them much less severely. I am on medication which helps. I have learned from this forum that everybody’s PD journey is different. I hope you both find the help and support you need. :heartbeat:


Hello Melwatson1
Sorry to be a bit slow in responding to your post, I’m playing catch-up at the moment. It is always difficult to respond to people where no formal diagnosis has been made as other conditions have similar symptoms and it can make it more difficult to wait for a diagnosis or indeed hear the actual diagnosis if it turns out to be not what was ‘expected.’ For this reason and because of your particular situation, I would ask you bear in mind my reply is general and fairly superficial.
To answer your questions, Parkinson’s does indeed generally start on one side, apathy is known to be a symptom many have, the cognitive problems you describe are also common and yes, medication can help a lot. None of this is easy to sort out and the early days can be hard. There is no cure but everyone is affected differently so it is impossible to say exactly what the future will look like for you both. Medication like the condition itself, is complex and it can take time to sort out the best routine, so if it is Parkinson’s there will probably be relief at being able to give a name to all the symptoms and a rollercoaster of emotions as the implications of facing an uncertain future becomes clear. Everyone here on the forum be it whether the person with Parkinson’s or their families will have been through this and lived to tell the tale, in most it is slow moving, and things do settle down.

I won’t lie to you, living living with Parkinson’s is not easy. It can be challenging and frustrating, you will have good and not so goods days and variations in how well you can manage at any given point. Despite that, it is possible to have a good quality of life with Parkinson’s and in one way or another your husband will find his own way manage life with Parkinson’s - some people see it as a battle always raging a war, some will spend hours scouring reports for research updates and searching the media for anything that suggests a cure, others like me set a lot of store by positive thinking - this turns up in quite a lot of my replies if you want to know more.

I hope that this helps a bit but really until you what the problem is, although I do understand why you are asking the questions you have, to say more would just be second guessing things which may just cause you further worry and may not even actually be a problem for him.

There are two things I would add. First make a note of symptoms, especially where they may change or be different as these may help the consultant when you do see him or her, and also make a note of any questions or concerns to make sure you remember everything you want to ask. Finally, I understand your view on no telling family at this stage, however chances are somebody may have noticed some signs and not like to ask and even if no-one has noticed anything, it may be helpful to share the secret. Let the family help and support you if they can; it’s needed now as much as it is needed after diagnosis and whatever the future holds. Please do consider sharing if you can.
My best wishes to you both. Please let us know how you get on.