28 months ago, I went to my GP with minor loss of dexterity in my right thumb & forefinger, which everyone assured me was carpal tunnel.
24 months ago, I saw my neuro consultant for the first time.
18 months ago my neuro consultant told me he thought I might have Parkinsons & started me on l-dopa. In the next few months I went to A&E 3 times with side-effects from the l-dopa (tachycardia, hypertension, palpitations.) Over the next year this was resolved (beta blockers) & the dose of l-dopa steadily ramped up.
13 months ago I fell in the back garden & broke my right ankle.
8 months ago I fell in the hall, and although unhurt I couldn't get up.
3 months ago my neuro consultant said he was beginning to suspect I had a Parkinsons+ syndrome, possibly PSP. I'm on 900mg/day of l-dopa, which at least keeps the dystonia under control.
This week, he told me he is fairly sure I have PSP. I sit here in my electric wheelchair, unable to walk unaided, drive, cook, bathe myself, go to the toilet, dress or undress myself or get in and out of bed unaided. I can't write or do anything needed manual dexterity. My speech is slurred. I'm permanently exhausted & can generally only manage one "thing" a day.
I wonder who I upset?
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Zumbruk
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Hi Zumbruk - sadly the series of events before diagnosis is familiar to many on here. Sadly even when you are pretty sure you know what the diagnosis is (I worked it out for my mum) it took a similar time for the Dr to diagnose. You will find people on here have much more useful advice than any Dr. Feel free to vent your frustrations or ask advice.
Hi zumbruk, my story is similar to yours. I have spent all 2022 visiting various specialists and being reassured I did not have PSP. Then in January I fell down stairs and broke my neck ( not dead or paralysed) and my symptoms suddenly got worse so I got my diagnosis letter in April.
Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. After those years in which L-dopa works, the disease generally evolves to a type of PSP, frequently RS, CBD,...).
However if you didn't feel any difference then maybe it was not working for you and suffer from other variants of PSP.
“daddyt" point out on 2022-07: It's important to note these are two different proteins involved with PD and PSP: Alpha-synuclein – PD and Tau - PSP.Levodopa Cardopa (Sinemet) has shown to have reduced the symptoms of bradykinesia in about 30-40% of PSP patients, depending on the variant. Its efficacy can lessen over time. My MDS has told me that a number of her patients went off the drug, then had better results the second time around. I have been on Sinemet for eight years and still benefit from its use alongside a daily exercise routine“.
"Lou T." has studied publications on parkinsonism and synthesized studies related to substances that could slow the progressive symptoms linked to PD and other related neurodegenerative diseases. It is interesting to read this document:
"Supplements we use to Try to Slow Parkinson's Progression (and other neurodegenerative disorders)" (2018-03-11)
On most of PSP types the only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone, it is posible to achieve a reasonable quality of life, even interesting.
On paper (2021-07-02) (whose reading I recommend):
Dr.James B Rowe, Dr.Negin Holland and Dr.Timothy Rittman.University of Cambridge Department of Clinical Neurosciences, highlight:
“For many cognitive and behavioural symptoms, support, tolerance and environmental measures are more effective—and safer—than medication. Experience (anecdote) and cohort studies dominate the evidence base, over randomised, controlled clinical trials. So, focus on medications that aim to reduce those symptoms that trouble the patient, or place them at risk. The following sections are a guide, not a substitute for clinical judgement. Ask the patient which of all the problems caused by PSP actually bothers them—the answers may surprise you! PSP robs people of so many abilities and aspirations, but professionals often unwittingly remove the patients’ autonomy. Patient-centred treatment is more satisfying, more likely to succeed and better for risk-benefit decisions.”
My case: My wife was diagnosed with PSP-RS in 2015. Before to be diagnosed the first symptoms showed up in March 2012 as: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) from March 2010. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did NOT confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.
A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations once overcome are often accompanied by some increase in the PSP symptoms and a decrease in the quality of life.
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Slow Progression PSP-P and MR Parkinsonism index predicts vertical supranuclear gaze palsy in patients with psp-parkinsonism
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