Hi,
My father has parkinson's for 15 years and I am trying to halt progression in some of the ways you all have. My father's issue has always been freezing and energy / just feeling unwell on days that freezing is predominant. PTT, are there any outcomes on freezing specifically? His DBS has essentially stopped all tremors and GREATLY improved rigidity. Freezing has basically made it difficult to move without fear of falling and losing balance.
A person cannot have FUS (PTT) after they've had DBS. (The soundwaves would heat up the electrodes and cook his brain.)
Gotcha. But wondering if DBS was reversed....
PTT does not help freezing and as Marc said you would have to remove all of DBS to do it and usually that results in brain damage unless DBS is very new.
Gotcha. Freezing is the only thing i am determined to figure out how to improve!
Aerobic exercise. Biking for 30-49 minutes at high intensity 60-80 rpm every day. In 2 months you will be better. Then continue with it forever.
I wish my husband could try this! He really is only barely able to rotate the pedals for the last 10 years...like maybe 20 rpm max.
Is he using a walker or walking stick ? After months of stalling and then occasionally resulting in a fall my husband now uses a walker at night and morning and a stick during the day. hasn't stalled at all while using these two things. If he forgets his stick he has problems still .
no he doesnt use an AD as of now and we would like to keep it that way as long as possible.
"Very new," indeed. You know how it only takes the tissue in an open wound a few days to begin sticking to a Band-Aid. I'm thinking the brain tissue begins sticking/attaching to the electrodes certainly within a week -- eh ?
Ah so the issue is post surgical adhesions. Ill need to look into that. maybe i am optomistic but i would think that a skilled brain surgeon would be able to remove enough internal scarring to free the implant. Also wondering if you simply turn off DBS during a procedure it would prevent nooking the area. All things to look into but since it has little effect on freezing likely not the option for us.
Thanks all.
Whether the electrodes are on or off, they will still be hit by the sound waves.
There are reports in the literature by neurosurgeons who tried to pull the electrodes out, but found they were stuck. Probably, not every electrode gets stuck in every brain, but it really doesn't matter what the reports/literature says, because to find that out in a specific person, they have to drill another hole in the head.
DBS also causes scar tissue in the brain which could make FUS surgeries dangerous even if hardware is removed. It is natural to have scar tissue form over implants. Either way FUS surgeries do not help with freezing , in fact they will not do them on people with freezing. It sounds like his DBS is working pretty well beyond the freezing.
unfortunately DBS seems to have run it's course for his freezing. Also cognitive decline and fatigue has become increasingly worse. No regrets about DBS - it bought him so many good years, but if there was an alternative, he would take it out. Just seems like there is nothing better than that at this time...
Freezing is really tough to deal with and my husband is having a hard time too. Have you tried physical therapy? A good one who specializes in PD may be able to resolve some of the issues.
Also, if you aren’t worried about using more meds, you might try apomorphine. It’s available as an injectable or under the tongue (sublingual) now. This helped my husband’s freezes and speech issues unlike any other PD med, but it only lasts for an hour at a time.
reading everyone's posts has me thinking that he has not been offered enough medication. rasagiline and carbidopa levidopa is all that has ever been offered to him. But this medication sounds amazing. I will look into it. He has been to PT and SLP for therapy. Some improvement and not much. Definitely no improvement with freezing.
