It's been awhile since I last posted, but I have been keeping up with the posts throughout this time. My wife, who is now 64 was diagnosed 8 years ago has Postural Instability and Gait Disorder (PIG-D) subtype PD. She has never had a tremor, but after her 4th year with PD her condition began to deteriorate rapidly. The most prominent symptoms were balance and falling problems. Sometimes she would fall 10 times a day or more. We had numerous visits to the emergency room with broken elbows and so on. Prior to the PD she ran scientific research organization with me which she helped co-found.

She has been on sinemet and mirapex for five years and these improved her stiffness, but did nothing for gait, balance and falling. (At higher doses, the sinemet and mirapex actually made her falling worse.) In trying to find something helpful I looked into STN DBS and read that this would probably not be helpful and might even make things worse.

After much research I starting reading the work that has been done is several places around the world, but especially at Toronto Western Hospital, by Lozano, Moro and their group their on PPN DBS.

Long story short, Susan had PPN DBS in Toronto this past January. It has taken her neurologist here in Boston about 8 months to get the programming settings perfected, but the results have been nothing short of spectacular!

She is not falling, she is able to walk quite well, she was basically unable to sit up on a chair for any period of time without sliding down and is totally fine in this regard now. Even her stiffness has been substantially reduced and her sinemet and mirapex have been reduced by 30%. The other interesting thing that has happened is that her very severe pain problems are gone. (Drs believe that this is because she is not tilted to the right and posturally off balance anymore.)

She has been able to get into intensive physical therapy and also works out with a trainer once a week (she used to do so 3x a week), but we'll take once! We both pray that these results are sustained for some extended period of time.

PPN target DBS has been done in relatively few places and requires a good deal more skill than STN DBS. The PPN target is more diffuse and harder to locate accurately.

I think that if and when you are considering DBS if your PD is PIG-D subtype the likelihood of improvement with STN isn't great as some people on this list have described. However, PPN target DBS when done by someone who knows what they are doing offers hope for those with PIG-D where there are few other options.

Although compared to STN target DBS much less research has been done on PPN target DBS. However, Lozano and his team have done some excellent case study series and have found substantial benefit.

I hope that more groups in North America learn about this approach and that insurance companies begin to understand that there are people for whom this is the best option.

Best wishes to all,

Howard