DBS One Year On

[Ianfrizell]

Hi all

This is a link to my latest vlog about my first 12 months with DBS

youtube.com/watch?v=YhuWtxe...(Not working as expected?)

Cheers,

Ian

[Enidah]

Ian, I have heard a lot and read a lot about DBS but your vlog was informative in a way that none of the others were. I didn't know you could feel the wires, I didn't know the head could be numb, I never heard that it could be irritating and itchy for a while where the controller is on your chest. This is all such good information to share so people know what to expect and also to know that if they have it done what they're experiencing isn't odd. Thank you for another informative vlog!

[glenandgerry]

Thanks for your informative video Ian. Do you think when you turn the DBS off that your tremors are now much worse than they were before you had the DBS fitted?

[Ianfrizell in reply to glenandgerry]

I think that my tremor is worse than before DBS, but perhaps it is that I have forgotten how bad it used to be! I do know that when I turn it off, I can't wait to turn it back on!

[Coling]

Hi Ian how long ago were you diagnosed before having Dbs

[Ianfrizell in reply to Coling]

I was diagnosed in 2011, but have had symptoms since around 1994/95.

[Coling in reply to Ianfrizell]

many thanks for your input Ian

[compucure]

Great blog Ian! I have had PD for 27 years now. Had DBS in 2011. I have trouble walking and cannot seem to get the right settings to fix this. I also use cannabis.

Tony

[moonswife]

Ian....we had a wake up call yesterday. The battery we were told would last 5 years died a year early. Have your programmer teach you how to check battery life and do not forget to do it. Now we understand a week of falling multiple times a day.

[Ianfrizell in reply to moonswife]

I check my battery every couple of weeks, but am unsure at which point I need to contact the hospital regarding replacement. I guess so long as there is more juice in the battery than my settings indicate, then I'm okay. I'll check with the hospital at my next appointment!

[PDWife60]

Ian, thank you so much for sharing your thoughts and reflections. My husband has Parkinson's, and his neurologist said in his last appointment that he might want to consider DBS in the near future. This has scared the hell out of him and me. Psychologically, we just aren't ready yet. My husband, and I, have embraced his PD (i.e., don't run away from it). I guess it is time to start avoiding the possibility of DBS, and your video helps tremendously. Thank you again.

[Ianfrizell in reply to PDWife60]

There are some other DBS videos on my Youtube channel, and also 2 vlogs on making the decision to have DBS - youtube.com/ianfrizell

[PDWife60 in reply to Ianfrizell]

Thank you. I also shared it with my husband.

[PDWife60 in reply to Ianfrizell]

We watched through Vlog #17 this morning. My husband started nodding off to sleep, so we will start that one over and move forward later. By the way, you are not boring him to sleep. He has times when he appears to be fully aware and engaged and then will suddenly fall asleep.

[Ianfrizell in reply to PDWife60]

#9 & #10 are about making the decision to have DBS. There are also videos about DBS side effects, DBS off/DBS on and DBS operation scars

[easy in reply to PDWife60]

Please understand that this is not a difficult or dangerous operation compared to say open heart surgery. Almost painless.

[Beverly2017]

Very very interesting and encouraging

[easy]

Thanks Ian! I had DBS 8/16 with very similar results. Yes, it was a " no brainer".

[annmariebaird]

Thanks Ian! I am 70 years old, was diagnosed in 2002, and until this year had decided I didn't want the DBS surgery because it seemed very intrusive and scarey. Then after being encouraged by my doctor and watching videos from folks like Ian, am now scheduled for surgery in late July. I am having my controller placed just below my rib cage so that it doesn't show when I am wearing summer shirts. I am very excited to take this step!

[Ianfrizell in reply to annmariebaird]

I wish you all the best for your future with DBS!