sharing info with specialsts

[pzagy]

Hi All

Hope everyone is safe and sound. I thought I would share a little about what I do with the specialists my mother in law has. I have started to e-mail them on a weekly basis letting them know what actually happens daily and the changes that are taking place with my mother in law.

As most of you are in the same position or nearing it, we are finding it very difficult to get my mother in law into the city to see her specialist and we would like to avoid going in the winter months all together. I am one to ask a lot of questions (that is why I am on this amazing site) and I like to get answers. In order for the doctors to get a clear understanding of CBD, PSP and all that goes with it I thought it would be a good ides to share the weekly happenings with the pros. SO I started to e-mail the specialist with the events of the week. I thought she wouldn't have time to read the information, quite the contrary, she appreciates them.

When we all go to our specialists they get an hour or two of our time and usually we don't have enough time to ask the questions we need to ask and they don't see the full picture. I get this, they are trying to find a cure but without the raw details of daily life they cannot. I know they have case studies with patients but that takes numerous visits and are limited with the information.

I have been doing this for about 4 weeks, and every week I give a breakdown of events big and small. She logs the information and has several questions for me as well.

Thought I would share this idea, well off I go we are having a surprise 21 birthday party for my son tonight and I forgot to order the cake....so much to do so little time

enjoy your weekend everyone

Paola

[abirke]

Pzagy, Good idea! we get into the dr's office and if I haven't written it down , I'm more than likely going to have to call the dr to ask the nurse to tell doc what I forget toa say. And even if you can remember things, It may be just good for the dr to have a few days to process what you are asking saying needing..... If I may just add that sometimes the day to day or even week to week may be more or not enough information. Maybe a week or so out from next appt. the carer can inform the Dr. of the events or behaviors or medical needs of their patient since last they saw them. A highlight if you will of the patient in the last 3 months.....I like that idea....thanks Paola....

ps are you as Italian as your name?

AVB

[Katiebow]

Great idea and good that the specialist is willing to take time to read about the everyday life of a PSP sufferer ( and carer I hope)

Hope the party went well despite the lack of a cake, not good for you anyway!

Love Kate xx

[am2015]

Excellent idea!! You have a very understanding Consultant who is willing to take the time and read through your notes on a weekly basis. I guess it's you educating them.

[Satt2015]

Fantastic idea! Well done!! X