FAQ/Help |
Calendar |
Search |
Today's Posts |
|
11-05-2014, 03:55 PM | #1 | ||
|
|||
Member
|
Quote:
I had DBS almost 11 yrs ago and found I gained wt fairly rapidly after the procedure. My neuro told me its because of the calories we lose when we're dyskinesic and since that ceases after DBS we gain wt. For me as well as that I would have to add my sudden joy of eating whatever and whenever I liked! Ive started being more cautious of what and when I eat lately and now that I'm back to relying on Sinemet a bit more find that it works so much better on a relatively empty stomach. Best wishes. |
||
Reply With Quote |
"Thanks for this!" says: | Betsy859 (11-08-2014) |
11-12-2014, 01:26 AM | #2 | ||
|
|||
Junior Member
|
Quote:
Thank you and all the best. Betsy |
||
Reply With Quote |
11-12-2014, 04:07 PM | #3 | ||
|
|||
Member
|
Quote:
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. |
||
Reply With Quote |
"Thanks for this!" says: | Betsy859 (11-12-2014) |
11-16-2014, 12:40 AM | #4 | ||
|
|||
Junior Member
|
Quote:
I hope all continues well for you and will post any action I take regarding DBS. All the best , Betsy |
||
Reply With Quote |
11-16-2014, 03:53 PM | #5 | ||
|
|||
Junior Member
|
Quote:
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 |
||
Reply With Quote |
11-16-2014, 04:31 PM | #6 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
11-16-2014, 08:30 PM | #7 | ||
|
|||
Member
|
Quote:
When it was time for my IPG's to be changed after the first wore down the warning light blinked as it was meant to on my patient programmer warning me in my case that one side was showing it was wearing out and so they were both changed at 3 yrs and 11 months. The second time they needed replacing the warning didn't come on my programmer and then they both showed that they'd both gone completely flat after 4 yrs and 8 months. I now have a newer programmer (I'm sure yours is same) that Ive been told is more accurate at warning of battery life wearing down plus I really like that I can change my settings up or down a little. I check it at the start of each month for it to flash so next time I'll have some warning hopefully! Betsy, I think one of the criteria for DBS is that meds are causing you to have unpredictable offs so it may be some time before you would be classified as a suitable candidate. That plus I think personally you have to really want it yourself because you feel your own quality of life could improve with it. Best wishes to you both. Lee |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
weight gain and rsd | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
How to Gain Weight | Myasthenia Gravis | |||
Weight Gain | Myasthenia Gravis |