Dementia Neurology Appointment Advice Please

[Gosport Nancy]

Things appear to be moving forward very quickly recently. I had a memory clinic appointment on the 13th of November and while I was there, the Doctor who saw me said that she would refer me to the Neurology team.

The appointment letter arrived today and as instructed, I rang the memory team who had said they would help with a volunteer to get me to the appointment and stay with me. No one in the memory team seems to know anything about the arrangement so I have had to ask my personal assistant to help. Luckily she is available for the Dementia Neurologist appointment.

My appointment is on December 1st and involves a round trip of around 40 miles. I had no idea it would be so tricky to get anywhere near getting a diagnosis.

I'm hoping someone on here could post some tips on talking to professionals about my situation as I don't feel I am being heard.

 

[canary]

Hi @Gosport Nancy

I think my best advice would be to write down a list of what you want to tell the doctor. That way you can look at it so that you dont get flustered and forget to tell them things. If your PA is going get them to come in with you so that they can prompt you about things you want to say and give you some back up.

 

[maisiecat]

Definitely agree with@canary about your list but I would also suggest you keep it to brief bullet points and also to taking your PA in. People only ever take in a limited amount in a consultation especially when the news is difficult to absorb. Most consultants copy you in to the GP's letter but ask that you have a written review of the appointment. I am so sorry you have such a long journey but again make sure you have a drink a snack and a visit to the lou so you are as comfortable for your consultation. I hope you get on well

 

[Gosport Nancy]

This came in the post today. It has spaces for appointment details, questions to ask and notes during meetings. This is one of the package of Alzheimer's Society publications

 

[Gosport Nancy]

Definitely agree with@canary about your list but I would also suggest you keep it to brief bullet points and also to taking your PA in. People only ever take in a limited amount in a consultation especially when the news is difficult to absorb. Most consultants copy you in to the GP's letter but ask that you have a written review of the appointment. I am so sorry you have such a long journey but again make sure you have a drink a snack and a visit to the lou so you are as comfortable for your consultation. I hope you get on well

My assistant is really chuffed I asked her to come in with me as she has other clients, some with dementia, and she thinks it would help her learn a bit more to help them

 

[SeaSwallow]

That looks really helpful @Gosport Nancy . And it is really good that your assistant is on board to go with you to the appointment.

 

[Gosport Nancy]

That looks really helpful @Gosport Nancy . And it is really good that your assistant is on board to go with you to the appointment.

I was really impressed with all the publications sent to me from The Alzheimer's Society. I have a lot to keep me focussed in a positive way. I need a bit of positivity after attempting to start on some puzzles from this book and realising I can no longer do any of the puzzles I used to be able to complete easily, a couple of years ago