Quote:
Originally Posted by Betsy859
Thank you for that information. Do you feel that the DBS has helped slow any progression of the PD down? I hear the PD still progresses but hear there is some talk about stem cells possibly growing as a result of DBS. How have you been doing these past 11 years? I keep hearing it makes an amazing difference in your life. I hope that's been your experience. Are you driving and exercising and generally getting around ok? Hope I'm not asking too many questions I'm just really curious about this whole thing.
Thank you and all the best.
Betsy
|
Hi again Betsy,
There has been peer reviewed findings in recent yrs that DBS done early rather than later in the course of PD has been beneficial.
I have a full drivers licence and still drive. I do most things like before.
Cook, shop, laundry etc.
I cycle on a stationary bike in the cooler months and now that its warming up here I exercise in the pool.
I've had PD formally diagnosed for 20 yrs now and was in my mid 30's when told I had it.
I know the PD has progressed but only because my neurostimulators or IPG's (internal pulse generators) as the batteries are known as both went completely flat on me 2 yrs ago and the few days without them were awful!
My Sinemet dosage soared and i had episodes where I couldn't move any part of me but could still speak so had my husband put Sinemet in my mouth as I couldn't.
Feeling so unwell and dependant really made me grateful for the independence that I enjoy on an everyday basis now and the realisation that without DBS in my case anyway I would have to depend on others so much.
In the early days after DBS was first done I managed without any meds at all but thats not very common and in retrospect I should've or could've taken a little but chose not too.
I take it on a regular basis now and have had no further recurrence of the dreaded dyskinesia which was bad before DBS.
Bradykinesia is minimal too, now when off its more a feeling of rigidity.
If you need further info there are websites like yahoo DBS that have many knowledgeable recipients of DBS that i think would be glad to help as well.
Best wishes.