DBS: Hello PWP! I thought I’d let you know... - Cure Parkinson's

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DBS

pdwife41yrs profile image
22 Replies

Hello PWP! I thought I’d let you know and share my journey with my husband who had the DBS surgery 6 weeks ago. 2 days ago the battery was turned on and will be adjusted weekly in the next 3 weeks until the right intensity is reached. I was personally hesitant for him to do this surgery as it sounded traumatic, but, after 14 yrs with PD, and being in advanced stage, it seemed like the best option. I don’t really have words to say how I’m feeling right now after seeing my husband walking more stable, no more shuffling, no more rigidity, no more dyskinesia, and no more “off” times. Is the surgery worth it? Absolutely!

This was a Godsend to us, I’m very thankful and grateful.

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pdwife41yrs profile image
pdwife41yrs
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22 Replies
MBAnderson profile image
MBAnderson

Congratulations!! Good for you.

ion_ion profile image
ion_ion

Thanks for sharing.

jimcaster profile image
jimcaster

Great news! Thanks for sharing.

faridaro profile image
faridaro

Very encouraging - may improvements continue!

Park4me profile image
Park4me

Thank you! Thank you! I have had PD for 12 years. DBS is my next step and I haven’t said yes because I am so scared! Any time I read someone’s positive outcome it gives me hope!I don’t have anything to lose any more

Jebbie12 profile image
Jebbie12 in reply to Park4me

Don’t let fear make the decision. Before my DBS I used a walker in the morning before meds. The walker is now collecting dust in the garage. Last week we were at the beach on vacation. I walked down to the beach every morning to watch the sunrise before taking any meds! Go for it! Just choose a surgeon who has done a ton of them!

pdwife41yrs profile image
pdwife41yrs in reply to Park4me

That’s absolutely the reason why I shared my experience with my husband, for someone like you, Park4me. Every single day since September 30 when the battery was turned on, I’m so thankful and grateful for this surgery. I’m 67 yrs old and my husband is 70, I thought I’ll be a caregiver for a very long time. Now, I’m ready to party again :) with my husband of course, cause he is almost back to normal, it is really like a miracle. I hope this will help you consider the surgery.

Park4me profile image
Park4me in reply to pdwife41yrs

I too am in the very preliminary process. My Neuro appointment is in a week and she’s going to ask me if I have considered the surgery. Then the tests begin for becoming a candidate. A long ways off. But at least I’ve gone from- absolutely NOT, to well maybe? Your post really helps!

Sherry1960 profile image
Sherry1960 in reply to Park4me

Did you have DBS?

Zella23 profile image
Zella23

Such lovely news and a positive outcome for your husband. So pleased to hear about the improvements and many thanks for posting.

Todd-pw profile image
Todd-pw

great news thank you for sharing this

1rocketman profile image
1rocketman

My husband's neuro said he thinks he'd be a good candidate gor DBS. It is very preliminary right now. He hasn't started the process of being evaluated by the many specialists who will be evaluating him (we were told around 40 individuals!) We are hoping he will be approved! Thank you for sharing your progress, it is reassuring!

pdwife41yrs profile image
pdwife41yrs in reply to 1rocketman

It is quite a long process to get approved, but, it’s good, you’ll have enough time to process and think about it. My husband was so blessed as somebody canceled and it all happened within a year. I wish you all the best, 1rocketmsn.

Cashewpup profile image
Cashewpup

So encouraging, and so very happy for you and your hubby!

Astra7 profile image
Astra7

Excellent news.

eschneid profile image
eschneid

That is great news for you guys. 14 years with pd here. Still very active playing basketball & other daily exercising, but take a boatload of c/l 25/100 IR + mucuna. Steadily progressing the past 2 1/2 years with dbs my next step, but not quite ready to start process as I'm still trying to convince myself it can be reversed.

I live in NJ and do not know the best surgeons, medical centers or which system (Medtronic-Boston Scientific, etc) is better. Wondering how all the dbs recipients reading this made those decisions and where you had it done. Grateful for any guidance or info.

Eric

pdwife41yrs profile image
pdwife41yrs in reply to eschneid

Hello Eric! My husband did a bit of readings on which one to choose, he picked Medtronic-Boston Scientific, so far, so good 🙏🏽 We live in Ontario, Canada, the surgery was done at Toronto Western Hospital where they have the best Neurosurgeons. I hope this helps, all the best!

Psalmody profile image
Psalmody

That is so good to hear!!!!

eschneid profile image
eschneid

Thank you pdwife for the dbs info. Wish you and hubby many happy, healthier years to come.

HartleyJR profile image
HartleyJR

That's great news. I've had PD from aged 31. I'm 47 and have been referred for DBS. Obviously apprehensive about having it but it could have a major impact in a positive way.

Gcf51 profile image
Gcf51

Does anyone have any idea of frequency of DBS? In the articles I read on 40 hz flickering light. The researchers settled on using 40 hz to try to reset the natural frequency of the brain. I am assuming the 50/60 hz of our power grids is corrupting our natural brain rhythm. DBS internal stimulation, 40 hz light, sound and vibration is external.

Gcf51 profile image
Gcf51

I finally worded a Google search to get an answer: The frequency of DBS is often categorized as high frequency (i.e., HFS, >100 Hz, mostly 130 or 150 Hz) or low frequency (i.e., LFS, <100 Hz, mostly 60 or 80 Hz)1. These two categories have varied therapeutic effects on motor function in those with PD. {I am shocked that 60 hz is used – I would have thought we would get more than enough of that from the power-grid} ncbi.nlm.nih.gov/pmc/articl...

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