Mum going for neurology appointment alone for possible parkinsons

[IncessantNameChanger]

I offered to go with her but she didn't want me there. I'm not convinced she will ask questions. Will they explain fully to her what this means if she does get the diagnosis?

They won't give her a diagnosis unless she has tried medication to treat PD. They will probably gather information and observe any tremor she may have at the first appointment. If they suspect that she may have PD, they will prescribe medication. But there are other reasons for a tremor.

There's no tremor. She has a stooped shuffling walk and stiffness. Unsteady on her feet. That's the only symptoms

Not wanting to contradict the PP, but I went to the appointment when my mum was diagnosed and the consultant gave the diagnosis there on the day. She had not been on any medication for PD prior to this. The consultant was lovely and talked her very carefully through it, but obviously it was still devastating. I am glad I was with her as it would have been hard for her to take in on her own with how emotional she was feeling. It came as a massive shock to her, though I wasn't at all surprised as she had significant tremors.

Can you maybe be outside the room if she doesn't want you with her? At least you can be there to support her if it sadly is a Parkinsons diagnosis or some other upsetting news.

If she can't take it all in, they have a great team of specialist nurses etc who can follow up.
Feel free to PM me if needed, been through this journey in the last couple of years with mum. Hoping for the best for you and your mum.

Does she swing both arms when she walks? If not that is fairly diagnostic for parkinsons.

No she doesn't @LiveintheNow her gp said she thought it was PD just from how she walked into her surgery.

Thank you @BlunderingBaboon I will pm you. My worry is that mum can't research or read up on PD so I think doesn't have a good understanding of how serious this is and she will in most likelihood deteriorate. She lives in a house with lots of stairs. In an ideal world we could plan for her to move somewhere more suitable if she is diagnosed but a) she is quite abusive at the best of times b) she seems unwilling to pay for anything that would improve her quality of life.

I'm really sorry you're in this position. When you say she's abusive, is this a new thing or has she always been like that?

Try and persuade her to let you go with her. I work for a neurologist and they usually like someone to be with the patient where possible even just to corroborate the history or add anything extra they might have observed or simply just to take on board what is said at the appointment.

If this is her first appointment with the neurologist they most likely will want to do some tests (for example and they will/should do a full neurological examination at the appointment and order an MRI - maybe arrange some cognitive testing). In my experience they would want to check every possibility and see scan results before giving a definite diagnosis of something like PD even though they might suspect it.

Every adult (assuming that they have capacity) has the right to go to private medical appointments alone. I can't imagine that I would ever want to take anyone with me - I would want to digest any so-called bad news completely by myself initially. So, however unfortunate, your mother's wishes should be respected.

No it's not new. She has I suspect a personality disorder and I have had professional therapy for child abuse. So while I want to help support her it's got to be with boundaries.

@Hbh17 I don't think it's because she needs or wants privacy. It's because she never asks questions like a lot of people with professionals they only take what's said to them iykwim? She has no access to the Internet and has told me the only things she knows about PD is what she has read in my 30 year old children's health encyclopedia. She was told its a two year wait for the neurologist and was happy to accept that whilist becoming less mobile month by month.

No one ever listens to me dispite the fact that I'm a biology graduate. But I know there are stages of Pd and the final one is dementia which she may or may not progress too. Being servery physically affected which she may or may not progress to. But it's got to be explained to her that it's a possibility or in my mind she will only seriously think about life adaptations when it's forced on her. Like think about moving after she falls and the hospital refuse to discharge her to her house.

But I know that's also her choice to make. If she chooses to do nothing and falls off the bus or falls down her stairs then that's her choice to make, but unless she breaks her neck falling, we will be drawn into her diagnosis at some point. She fell during covid and decided to not call for help for 20 hours. 20 hours on the floor because she though it was best see if she eventually get up dispite wetting herself as she had been onnthe floor for so long. Paramedics was asking us lots of questions that quite frankly i was blindsided by and mum denied anything and everything then refused the 6 week of help after discharge from hospital.

Whether she is just bloody minded or diluded I don't know but yes I'm worried she doesnt understand the gravity of this potential diagnosis. She will not ask questions.

I think the Parkinsons is part of what makes her behave that way. They are unable to perceive how they are behaving.

Really? Oh gawd. Is that a late stage thing?

Not sure what stage as it is gradual and insidious. It is something that affects decision making and executive functioning.

I didn't know this, I thought that only happened at the dementia stage. Lots I don't know and as I'm not allowed to join her at the appointment, plus she will never give LPA I don't know how this will pan out at all ☹️

It is probably easier to take things as they come. I struggled to be proactive and get anything put in place due to family member's denial of their situation and medical professionals listened to them! I used to sit in appointments contradicting everything that was said... an OT is probably the most useful person as they will assess living conditions and recommend aids such as walkers and hand rails.

Just found this thread. Your mum's diagnosis will be well past now. I hope if it was Parkinsons that her treatment is going well. It is a progressive condition but not necessarily fast. It can be diagnosed from symptoms alone, many Health Boards also carry out scans but not all. Many Parkinsons patients have a tremor but not all. Non-motor symptoms are experienced by some but not all (including depression, apathy, sleep disruption, cognitive problems).