Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Vascular parkinsonism

Hello all from a snow-free England. Quick gloat, but I do realise the snow in the US is not a joke!
Anyway, I ramble and distract myself. Last February, a neurologist diagnosed me with vascular Parkinsonism. Imagine my surprise when, in his closing comments, he said fairly authoritatively that Ank Spon was to blame; he qualified that by adding, 'or the surgery'.

I have had 27 falls in 2025 and 30 in 2024. I am wheelchair-bound but can escape it on familiar terrain like home. I am permanently dizzy and have no balance! Has anyone else suffered my fate?

Alan Known as inept because I am

Howdy, Alan!

I'm very sorry to hear the disease progression! You could use a dip in the Serpentine (mild jab)... Yes, AS is a nasty beast that causes several vascular problems. The primary problem is excess IgA and inflammatory deposits/debris that block capillaries. There are ways to avoid, but I do not know about actual treatments for this, outside of fasting.

I get a little dizzy also. Just off another 5 day fast myself and I did not do very well after such a long hiatus from famine cycles. I was doon for Burn's Day even! Still, I haven't checked my capillaries yet. Sometimes I take the enzyme nattokinase, in the hopes that carries away some of the crud.

27 falls! Too many. The trend would be good if You were not a year older. You fell down 3 fewer times, but You probably did 18% less stuff to put Yourself at risk! I really hope that You can better control that particular aspect of Your golden years. Perhaps parallel bars throughout Your environment will be required and there are really good fold-up walkers as adjunct to the wheelchair.

We were in London September before, visiting Professor Ebringer at his retirement home in nearby Hendon. Gave me his 3 published books.

Glad to see Your post.

HEALTH,
John

Was hoping for a response from you, John, and I got my wish. Yes, I am very careful when walking these days. It was a disappointing diagnosis because I had envisioned making a few odd items of cabinet work in retirement, not that I have retired; I am still teaching piano. But. I cannot even sweep a plane over a piece of teak a half-inch thick, and thus I tend to sit around a lot. Further to that Parkinsonism update, I have considerable rib deflection too; they seem to be deflecting out of my chest area! I presume, John, that your fusion of skeletal parts is widespread? Thank you for responding; it is always a delight to correspond with you.

Alan.

Hello Alan,

No wisdom here unfortunately because I too ramble a bit and am profoundly inept. Sorry to hear about the newest turn in you AS journey. I’m pretty sure doctors when left without an answer doctors in my life default to blaming my AS without much of a detailed explanation why.

Glad to hear you are still teaching piano. I suspect anyone getting to learn piano with you is fortunate.

When we got the snow, almost 2 feet of a frozen blanket by me, I was out in my driveway like a crazed fool trying to dig out with a well weathered snowblower. Couldn’t wait the two days for my buddy with the overworked snow plow. Evidence that I remain, profoundly inept and unrealistically optimistic.

I still find your spirit tremendously inspiring.

Thank you

God bless you, Steve. I imagine that your girls are amazed at their Dad, who is in no way inept. You postings are a delight to read, and sage advice is always forthcoming. If I ever get to New York, I have been to Old York a few times, I shall appear in your lawyerly office and beg to be introduced to the fab father of triplets! Reading your response made my day - Thank you.

Alan, that's quite the number of falls! I'm so glad they figured this out. I'm sorry for the diagnosis, though. I didn't know that AS could go hand-in-hand with this. How are they managing it for you?

Good to know your usual sense of humour is in place, my friend. Best from Leicester. xxx

Apparently, 36% of AS'ers go on to have Vascular Parkinsonism, quite a large percentage in my view. Further, there are two categories of it: 1 and 2 Doh.
I have category 2, which does not respond to medication. The neurologist tried me on Co-Careldopa, the full Parkinson's med. It did nothing. Sadly, there is no alternative.
I have fallen 9 times in 2026, have had to purchase an electric wheelchair and face up to life with yet another permanent condition.

Best from Nottingham, sorry to hear you are suffering too.