nerve damage affecting PD?

[dkdc]

Bad SI joint seems more of a PD trigger than levodopa at the moment. Any comments?

[dkdc]

than lack of levodopa

[pearlette]

A lot of Sacroiliac joint discomfort...to pain in Parkinsonism is likely to be posture related (the hidden struggles to keep your head up, upper neck etc etc ) . All those subconscious adjustments we make take their toll.

Stretch exercises may be the key when safely done.

I personally found doing a Feldenkrais structural integration and then moving on to hybrid Yin / Vinyasa type of yoga worked for me (for dyskinesia). The discomfort recurs but I seem to be able to manage it better.) .In the past I have done more action focussed yoga or exercises which dont work well for me. I also need enough levodopa.

Try out something that is easily available for you rather than chasing anyone elses suggestions.

[dkdc in reply to pearlette]

I have a whole book on PT exercises but am not allowed to do any PT - having just had 2 back surgeries. SI issue preceded surgeries but they probably made it worse. For now if I avoid walking at all I am much better. Also, I can't use any NSAIDS - so maybe an injection would help. Thanks. I think it started with DBS hitting something it shouldn't (still is doing that),

[pearlette in reply to dkdc]

I dont kow what back surgery you have had but eventually there will usuallybe a stage where you would be able to do some gentle stretching. A good physiotherapist could advise you when the time is right.

If DBS has done structural microdamage , the area representing your sacroiliac joints would not usually be pranged in isolation.

Good luck in finding a solution

[dkdc in reply to pearlette]

thanks. We are trying a kitchen sink approach - DBS adjustment, botox injections in foot and calf, leg brace, etc.

[Astrojupiter in reply to pearlette]

I agree completely. I did mostly yin 3 hours a day for 7 months. I quit mostly now. My stiffness and strength improved greatly. I was not able to speed up my normal gait, but I was able to increase my gait when crossing a road. I had SI joint pain that limited my walking, but it resolved also.

[pearlette in reply to Astrojupiter]

Thank you. I have dabbled with yoga before and after my diagnosis. After my diagnosis I have also tried various other options and have now been honing in on what worked for me.

Recently have notice my strength has been declining so it is encouraging to hear about your experiences.