Good Morning all, my 83 year old mum is newly diagnosed although in hindsight she has had symptoms for years, which were brushed off by her GP. She has been on Madopar since December and we are off for her first consultation this morning - this is all new to me, so wondered if you’d be kind enough to suggest things to ask - what do you wish you’d asked or known from the start that would have been beneficial to you? Thanks you and all the best to you all on this journey……
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Sorry to see you had no replies in time for the appointment. I hope it all went well and you got some answers. My husband is newly diagnosed and I know he was in toouch of a, state of shock to ask questions at the time.
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I wish I’d asked if it was okay to decide myself whether/when to increase the dose of madopar.
I found that 100mg three times a day was not enough, as it only works for 2.5 hours.
I have to wait another three months to ask my consultant. Then a new prescription might be passed on to my GP to dispense. That will take another 8 weeks (it did last time).
So perhaps 5 months to wait for something life changing, but simple.
Hi Malteser, Sorry to hear about your mum. I wish I could advise on what questions to ask but I am only newly diagnosed too. The only question that I asked was, I am losing my mobility, will I loose my marbles? Probably a stupid question, but it worried me that it might happen to me. In the short time since I was diagnosed, I have started doing more and more things. It seems we all deal with it differently. For me, the saying, “if you don’t use it you’ll loose it”. I have taken on new mental training activities and more and more walking, even when it hurts. I think it’s personal and I wish you lots of love, strength and luck for you and your mum xxx
Hi Lemon, I understand that and felt the same really quickly. The medication dosage wasn’t enough. I am handling it better now though. Good luck my friend x
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Morning Lemon, thanks for your reply. My mum has been on Madopar since the start of December, on Friday she has had her dose increased from 3 tablets per day to 4, hopefully we will see some improvement. Hope you are doing ok. X
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Morning Jacky, all the best with your routine, I wish I could get my mum in a more positive mind set, I know she has 20 years on you but she won’t do anything to help herself, I’m going to ask for a referral to a physio, even if it is chair exercises! When were you diagnosed, have you had symptoms for a long time in hindsight [which we all know, is a wonderful thing!]. Hope you’ve got lots of support around you too. X
Hi Malteser,
I was diagnosed on 21st January but think I had symptoms over the last 2 years. It’s a tough one, especially for your mum, having already had 20 years of it. Mindset is probably one of the most important things to me. I think if I try harder and try to be as positive as possible, maybe, just a big maybe, I can conquer things. Keep myself fitter for longer. Does that make sense? Lots of luck to you. How is she doing now? Did you get the referral for her?
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Hi, sorry, reading my previous message to you it sounds like my mum has had Parkinson’s for 20 years, what I meant was she is 82, so has twenty years on you.
I’m not sure how long my mum has had symptoms as she was always putting things down to something else, including old age, and her GP repeatedly told her there was nothing wrong with her. With all that has gone on over the last two years it was difficult to visit as she was at the time in Weston super Mare, when my sister and I finally visited we were shocked to see her decline and immediately thought Stroke or Parkinson’s, it took two years for somebody to diagnose her and take her symptoms seriously.
I guess it all started with a slight tremor in her hand along with losing the ability to write the way she did, then it progressed to a feeling of weakness, her husband put it all down to old age too.
Unlike you, my mum does very little and I can not get her motivated, she says she wants to do all she can to help herself, but doesn’t put her words into action unfortunately. I’d love for her to find a local support group but she doesn’t want to know, it’s so frustrating. Have you been assigned a Parkinson’s nurse to support you and offer you physio?
Have you family to support and help you?
Take care, it would be lovely to hear from you, but please don’t feel compelled to reply if you would rather not. x
Hi there,
I have been referred for physio as we have a specialist team in Jersey. They are able to advise, support and answer any questions. My first appointment with them is next Monday so I am continually thinking of the questions that I would like to ask. I am making notes too lol. I wish I could help you to help your mum, but, alas, she would need to want to hel,p herself. You are a great daughter and I hope that she is grateful for that. I have my son in Jersey but my daughter lives in the UK. She is really supportive over the phone though and that’s a great help too. How are things going now for you and your mum? Take care, Jacky xx
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