Originally Posted by made it up (Post 1107497)

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.

Originally Posted by damon4309 (Post 1107608)

Hi Betsy
Weight gain in DBS is probably different degrees . Mine seem to have leveled off. I am stuck with 229s lbs. My MDS stated 3 to 6 months and it may become stable. Prior to surgery I was to busy worrying about walking and symptoms of
caused by the meds mainly paranoia. Not being able to walk burns calories as do dyskinesias . After DBS there is constant stimulation where the metabolition
becomes stable probably lower. I am not sure what caused the excessive appetite but I have it under control. I try to eat healthy while watching calories
I use the nutribullet for veggies and fruit. I was scared to have DBS. It really is not as bad as it sounds. It does not hurt (mild discomfort). I am due on Dec 18 for my 4th programing. I have only "on" time. The ability to drive has been renewed. The only discomfort is a heavy feeling in my legs which will be targeted at the next programing. The meds have been reduced by about 40%. Congrats on your daughters 25th birthday. To sum it up, when the ability to take care of yourself is gone and the meds stop working as they use to, DBS will enhance
your quality of life.

Originally Posted by made it up (Post 1107497)

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.

Originally Posted by damon4309 (Post 1108223)

Hi Made it up and Betsy
I recently was told that the stimulators were good for 2 to 5 years and that they were able to tell when a patient was needing a replacement. I imaging it was terrible for the couple of days that you were without them. How long had they worked before going flat? It makes sense that the lack of dysconesias would lower the metabolism but doesn't explain being hungry all the time. I can't post the link because I a new but I found a really good article on PD in general. JUst google PennStateHershey Parkinsons Disease. The article pretty much covers a lot of questions. I have ordered Forskolin Extract standardized at 20%. This is for weight loss and should not interfere with any PD or DBS benefits. It is not a stimulant but a supplement for weight loss. Normally I would not believe in this but I first heard of it on the DR Oz show. Anyway I will be getting it from Amazon this weeks and let the forum know if I feel any different and what effect ,if any, it has on body fat.
Have a great week!
Damon

Originally Posted by damon4309 (Post 1108223)

Hi Made it up and Betsy
I recently was told that the stimulators were good for 2 to 5 years and that they were able to tell when a patient was needing a replacement. I imaging it was terrible for the couple of days that you were without them. How long had they worked before going flat? It makes sense that the lack of dysconesias would lower the metabolism but doesn't explain being hungry all the time. I can't post the link because I a new but I found a really good article on PD in general. JUst google PennStateHershey Parkinsons Disease. The article pretty much covers a lot of questions. I have ordered Forskolin Extract standardized at 20%. This is for weight loss and should not interfere with any PD or DBS benefits. It is not a stimulant but a supplement for weight loss. Normally I would not believe in this but I first heard of it on the DR Oz show. Anyway I will be getting it from Amazon this weeks and let the forum know if I feel any different and what effect ,if any, it has on body fat.
Have a great week!
Damon

Originally Posted by damon4309 (Post 1107608)

Hi Betsy
Weight gain in DBS is probably different degrees . Mine seem to have leveled off. I am stuck with 229s lbs. My MDS stated 3 to 6 months and it may become stable. Prior to surgery I was to busy worrying about walking and symptoms of
caused by the meds mainly paranoia. Not being able to walk burns calories as do dyskinesias . After DBS there is constant stimulation where the metabolition
becomes stable probably lower. I am not sure what caused the excessive appetite but I have it under control. I try to eat healthy while watching calories
I use the nutribullet for veggies and fruit. I was scared to have DBS. It really is not as bad as it sounds. It does not hurt (mild discomfort). I am due on Dec 18 for my 4th programing. I have only "on" time. The ability to drive has been renewed. The only discomfort is a heavy feeling in my legs which will be targeted at the next programing. The meds have been reduced by about 40%. Congrats on your daughters 25th birthday. To sum it up, when the ability to take care of yourself is gone and the meds stop working as they use to, DBS will enhance your quality of life.