Hi both of you.
My unit is Boston scientific and on left I am on 1.0 and right 0.9. I was switched on on the 13th and the dystonia had took hold of my right foot and it corrected it in seconds.
Found it rather surreal as the sensation I got was the same tingle as when the dystonia kicked it without all the bulls×××.
I am already down to half my meds and on a very low setting.
For me this had given me a new lust for life.
And has potentially even saved my marriage. The mood swings from the meds I got had my coming at Colin like a mad woman as my dystonia is very aggressive trust me if I come at you as a mad woman most men would do a runner.
I hope you get you level sorted soon mrtoad.
My best to both of you xx
Hi bb .i thought you was having the medtronics as i thought you were advised to hang on to they have ironed out a few problems with the Boston have you got 25 yr rechargeable battery that is very low settings this is good my right side was high when first had dbs about 3.20 v but as time has passed and my pd is attacking my left side now and legs it's 0.80 v .I'm glad it's gone well for you as you were in two minds . How you getting on with your hand control.
Not used hand control yet will only do that under advice from London team. What has cracked me up is how much it looks like a Nokia phone.
I had the 5 year battery installed as they said the replaceable battery tends to be more reliable with the new hard wear than the 25yr once and in 5 years they feel the 25 yr battery will have improved greatly.
Best wishes Gus BB X
thanks for confirming that you have a five yr one ,as i was also advised to wait until they have improved the rechargeable, do you have four contacts on each wire or more . all best gus
Hi BB and everybody, I am pleased to say I have now had my assessment and meeting with the professionals and am on the list for the operation in 6 months or so. Of course it's all a bit daunting but I want it to work and am going for it. I must say everybody at the hospital is so nice and so professional, they give me confidence. I look on here everyday and love to hear of your experiences. Onwards and upwards, my best wishes to you all. Branwell xx
Hello brothers and sisters in arms I have a query re other minor aliments like hay fever or a cold today I upped my settings and all of a sudden no hay fever problems any one else found this.
Post DBS preformed 5 weeks ago.
Thanks folks.
BB xx
This is me having the worst Distonia attack I have ever had and since having DBS I have not had one single attack apart from switch on day when I had to let it kick in. Please share this with anyone whom is at all curious I want this to go worldwide so everyone can see just how bad Parkinson's can be.
Bb you really made me have teats to my eyes this time.i think when you showed everyone that video last time did no justice what so ever i really understand now how much the distonia is so painfull as had my 5yr assessment dbs and i have this right across my shoulders and neck now. Me and my wife was saying why do pduk not have tv advertising how bad parkinsons is.i hope your dbs is exceeding expectations
All best gus
I have just started taking coq10 i have been taken 100mg 3 of these with my meal they say they help cell death as well as boost energy circulation lots of other things. Not too expensive either about 8 to 10 pound for 120 capsules
Hi Gus,
Tv advertising is just so bloody expensive this was shown at the puk Symfunny event at royal Albert hall 4000 people there all saw video.
I have chosen to upload it as I want it to go worldwide I thought before DBS I could not view it but my DBS is as you said proving to be well beyond my expectations it's is bloody brilliant I have me back my voice is actually stronger and no stiff pain full joints in fact I would go as far as saying I feel young again except when tired lol. If you have people you can send it to please do I am determined as hell they will learn how bad this condition can effect us all ..
Much love to both of you and remember that was then this is now. BB xx
