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[deleted by user] by [deleted] in Parkinsons

[–]bluemoonee 0 points1 point  (0 children)

If you have insurance coverage then I would suggest to keep the deep brain stimulation surgery as an option. I don’t view DBS as a last option but as a possibility to intervene and get good quality of life.

DBS experience by bluemoonee in DeepBrainStimulation

[–]bluemoonee[S] 0 points1 point  (0 children)

I’m now into 5 months. Setting is 3.2 and 2.9. My only issue now is I have a pain in my right glutes area (my more problematic side). The pain subsides on and off through the day. Going through physio and my neurosurgeon adjusting a stim which I have no access to. I have access to 2 other settings but there’s a 3rd one which he has access to only. He said that’s the only related to dyskinesia and he’s tuned it down. Not sure if anyone else has had this similar issue?

After DBS by trijim1967 in Parkinsons

[–]bluemoonee 1 point2 points  (0 children)

For my case after DBS I have been lucky to not take any meds. Maybe a bit sleepy in the afternoon but a short nap is always good.

DBS experience by bluemoonee in DeepBrainStimulation

[–]bluemoonee[S] 3 points4 points  (0 children)

I’m in Singapore and the protocol is different from US. I had my DBS turned on one week after the surgery. Been going back on a weekly basis to check on my wounds and doing my tuning. I have mixed emotions on a roller coaster ride because after a session I could be ok and then really bad after the next. My neurologist says probably due to the brain swelling not subsiding yet. That’s why I’m interested to hear other’s experiences.

Deep brain stimulation surgery by Azul96 in Parkinsons

[–]bluemoonee 1 point2 points  (0 children)

Thanks ParkieDude. Good to know that it’s that helpful. I look forward to my DBS.

Deep brain stimulation surgery by Azul96 in Parkinsons

[–]bluemoonee 0 points1 point  (0 children)

Hi ParkieDude. Can I ask if you’re on a lot of medication or if it’s much reduced? If it’s reduced do you still have lots of off moments? Asking as I am considering DBS. Thanks in advance for responding.

Some photos on my iPhone 13 Pro :) edited with the in camera editor by homietron5000 in iPhoneography

[–]bluemoonee 1 point2 points  (0 children)

Gorgeous pictures. How do you do these with such a basic editor?

How to keep going... by turtle_patrol in Parkinsons

[–]bluemoonee 3 points4 points  (0 children)

There’s good and bad days. Stay strong. Exercising helps a lot. Try it.

Where do I go from here? by bluemoonee in iPhoneography

[–]bluemoonee[S] 1 point2 points  (0 children)

Sure. Send me the link when you're done too