My Story (variants)

[MullerRice]

As well as a cure, I believe early and correct diagnosis is key, and inspired by TimBowPSP [healthunlocked.com/psp/post...], here is my story.

After my speech became slurred and hesitant In November 2023 I was chatting to my niece over Christmas (who was then a Speech and Language Therapist attached to the NHS) who suggested the possibility of a mini-stroke (my falls due to imbalance started at least two years earlier, which I initially put down to just getting old). She persuaded me to see my GP, who arranged a visit to TIA (Transient ischaemic attack) clinic at my local hospital. The TIA doctor gave me an MRI scan and as she suspected PSP, she referred me to her colleague who 2 months later, in May 2024 confirmed the diagnosis of "Progressive supranuclear palsy with elements of a left Corticobasal syndrome" - I'm assuming this means I have sub-type/variant PSP-CBS? When I have my six-monthly follow-up in February 2025, this question is top of my list of questions to ask. I'm beginning to learn that actual symptoms may vary between variants. To this end, I would be grateful if, where known, patients and carers would always include the variant when they talk about PSP.

Thus, unlike many others on this forum, I was initially came through a mis-diagnosis of a mini-stroke as opposed to the Parkinson's route. I am forever grateful to the TIA specialist who mistakenly thought I fell over backwards (if anything I tend to fall to my weaker left side) as this possibly shortened the correct PSP diagnosis. TIP: if you suspect imbalance leading to falls, especially in connection with the involuntary movement of the head when asked to look up or down or left or right (something I also suffer from), insist on an MRI scan straight away, and if necessary, ask ask for second opinion. (Loss of balance and falling affects many people with Parkinson’s and the problem tends to increase over time. But everyone’s experience of Parkinson’s is different, so you may not have these difficulties.)

Memory: My memory has always been bad. But I retain a lot of historical knowledge and always do well in (TV) quizzes.

Spatial awareness: After driving into a kerb, shortly before Xmas 2023, and mis-judging a roundabout, shortly after Xmas 2023, (fortunately no-one was hurt) I have not driven since.

Typing and handwriting suddenly deteriorated around early Spring 2024. With typing, as I have said before, I make frequent mistakes, despite typing ever so slowly. It has taken me more than four hours to type this post, as I like to get things right.

I suffer from bladder incontinence and constipation, and again as I have said before, I take extra fibre in the form of Macrogol / Strigol / CosmoCol to help with my constipation, but finding the right amount to take is problematic.

Mobility: I have difficultly getting into and out of bed and moving in bed, but otherwise have no mobility problems. I can still walk unaided, but my wife links arms with me in case I fall. I have fallen once every week on average.

Exercise: I am a firm believer in exercise and I urge all patients to follow the regime set by your physiotherapist, as I believe this will delay the inevitable.

Apathy - all I want to do now is watch TV. I have lost all interest in maintaining my website and completing my family history (about 95% complete).

Swallowing: No swallowing issues as yet but I have been coughing a bit of late, fortunately not while eating food.

Vitamins: Ever since Covid reared its ugly head, I have been taking Vitamin D regularly (2000 mg daily), as well Magnesium and B1 Thiamin recommended by others. I believe my PSP symptoms are only mild/being held at bay, but only time will tell.

In the words of TimbowPSP, please stay positive.