Today was our 14th Wedding Anniversary and my husband and I had a lovely day together. We have been looking at planning a few trips over the next few years. Starting with a trip to Queenstown in October. Hoping to go to Rarotonga next year and then perhaps to UK in 2026.
The problem with all this forward planning – yes, I am still a planner – is that we don’t exactly know how I will be with my Parkinson’s in even a year’s time let alone two years to 2026. I worry a bit that I may not be able to manage a UK trip again if we leave it too long.
I have been waiting for a follow-up appointment with my Neurologist. On the day I was diagnosed 15/12/20, I was told that I would see my Neurologist every twelve months for a review. Here it is June 2024 and I have had exactly zero follow-up visits with him. I have noticed a few reasonably minor changes in my presentation and would like to know how he sees my progression. I had also discussed with the nurse that I would like to be tested for genetic link for Parkinson’s so I can tell my children. Still waiting for that to happen too!
Hopefully, I can get to see the Specialist soon as I would like to have a discussion about my symptoms and the impact on my future. At one stage I was told that I was a ‘slow burner’ and hope that I progress slowly. However, with noticing changes it concerns me that maybe my body is revving up to attack me!
Hopefully, I will get to see my specialst and see if there is perhaps an adjustment in medications that can be made. Perhaps also I could get some idea of timeframes before things start to get difficult.
Watch this space and hopefully soon I can report back about the meeting with my Neurologist.
My journey with Parkinsons 
Hi Sue,
Does your GP manage your PD?
After diagnosis, the letter I got was that my GP would manage my meds and if needed he (gp) can confer with him (neurologist) and that also an appointment can be made to see PD nurse.
My meds have been altered many times and other med’s added too.
i have an appointment on Tuesday to see PD nurse.
Hope this helps….
Jessie 😊
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Hi. I have not had my meds changed much in nearly four years. One slight adjustment is all. When diagnosed I was told I would see the Neurologist annually for a review. That has not happened. GP is good but does not have the knowledge of a specialist.. I feel I need to have time with the specialist to discuss progression and medication changes that may be necessary.
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Gosh that’s along time with out being seen. I hope you do get an appointment… Even if you start with getting an appointment with your PD nurse.
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I have seen the Parkinson’s Nurse a couple of times, but despite having asked more than once to see my Neurologist, nothing happens. I feel I should have had at least one follow-up from my Neurologist in 4 years!
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I have seen the Parkinson’s Nurse a couple of times, but despite having asked more than once to see my Neurologist, nothing happens. I feel I should have had at least one follow-up from my Neurologist in 4 years! My GP as a general practitioner, does not have the expertise to know what to advise if Parkinson’s related issues arise. I just want to get some idea of whether he sees progression and if there are any changes to my being a ‘slow burner’.
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Hi. My GP looks after my general health and wellbeing, but Parkinson’s is – as you will know – a very complex condition and each Parkinson’s journey can be different from others with the same condition. The specialist is obviously the one who has the broad range of knowledge to assist with any subtle signs of progression and what to do about them, if anything. I feel not having seen the specialist since my diagnosis is not a reasonable thing to expect. Just one appointment per year would at least make me feel that I am being monitored by someone who has the expertise to guide me.
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