Originally Posted by Betsy859

Hi Damon,
I read Grain Brain and went on the diet because it was supposed to be neuroprotective and decrease inflammation. Weight loss was a nice bonus. Dr. Perlmutter suggests a daily limit for carbs and says "good" fats are good for the brain and sugar is bad. This diet is supposed to be long term and healthy. I'm not sure what the Adkins diet recommends but I eat fruit just not a lot but lots of vegetables roasted in olive oil. If I hadn't been sick I'm not sure I would have been motivated to give up all my favorite foods but now this is how I plan to continue eating. Diet recommdations are backed up by studies in the book. It's an interesting book written nicely. I got it off Amazon.

I'm really glad you are doing well with the DBS had no idea weight gain could be an issue. When I was first diagnosed with ET I went to see Dr Perlmutter in Naples. He's the one who told me I had PD and ordered a DaT scan and put me on glutathione. I think he may be the only MD prescribing it for PD IV push. It's a compound medication made in his pharmacy (at least I think
he has some ownership). Glutathione is a powerful antioxidant that gets depleted in PD. It's controversial and your mainstream doctors will not recommend you take it. It's prescribed twice a week but I can only manage once a week. It seems to have a calming effect on my tremors and gives me energy. I get better results if the IV infusion is around the time I get acupuncture. It's sold in many forms in health food stores and online.
The meds I'm taking are barely keeping my tremors under control. I don't want to increase the Miraplex because of the side effects in particular fluid retention. I have to manage this very aggressively by wearing lite compression stockings every day. Exercise has done the most for me and meds have helped the tremors. BTW the azilecte is very expensive I buy online from a Canadian pharmacy,the miraplex comes from another pharmacy and costs less at a $1.00/pill.
Take care.
Betsy

Originally Posted by damon4309

Hi Betsy
I can relate to not wanting to increase my meds. I can only write from Sinemet
and Requip. The Requip IMHO made me worse and very tired. The only other med I have taken is Sinemet. This to , in high doses can cause paranoia and sleep problems. After DBS my programmer stopped the comptan. The second time she reduced the 25/100 to 14 from 21mg...and 1 reduction of 3 50/200 CR to 2 pills. The paranoia and other side effects have dissipated. I would like to decrease more. On the third programming just 1 25/100 was reduced. My next programming is in December. I have changed my diet to modified Atkins where I can consume as much leafy greens and 1 or 2 handfuls of fruits. I also have greek yogurt and organic whole wheat bread sparingly. Snacks include hard boiled eggs, 12 cashews and carb free protein bar. For dinner I eat Salmon ,chicken and turkey. There is research out there that touts Atkins as neuro protective but to counter that claim the inhibition of sinemet's effectiveness is jeopardized. Thus far 6 days I have lost 2 lbs nothing to write home about. If I were to stick to a strict 20grams per day Atkin's plan. I probably would have lost 6 to 8 lbs. Atkins benefits as a potential for slowing progression, are not enough to consume fat every day. For now I will stay the course. Another problem with Atkins is the rapid weight gain and more of it should it be stopped

Originally Posted by Betsy859

Hi Damon,

I've been in NYC celebrating my daughter's 25th birthday, going nonstop with NYC marathon and party, theatre, dinners, Knicks Wizards game, and shopping so been out of touch. Reality hits Friday when I go home.
I'm so happy that you've been able to get off some of these IMHO horrible meds.
I'm on relatively low doses of Miraplex (1.5mg) and it's hard now to tolerate the side effects on some days. It's different on different days. Not sure why. So I see BDS in my future but hoping something less drastic can be done in the future. I have the utmost respect and admiration for you and the many others who have undergone this procedure. It freaks me out watching this procedure on YouTube while people are AWAKE. So, I'm happy, from the sounds of it, that you are doing better and able to lower your medication dosage. How is your mobility doing? Is that improving? Are you driving?
As for the diet, It sounds like we are eating the same things. I think the diet I'm on may allow more carbs 50-60 gms per day but I really don't count. I know what to eat and most of the time stick to the plan. Yes, I've read the same literature posted on this forum about this diet being neuro protective but that's what Dr. Perlmutter claimed in his book; that's why I started following the diet.
It gets easier and the desire for all carbs gets less and less, at least for me, the longer I've been on the diet. Even in NYC the past week I've followed the diet except I'm eating more fruit and less vegetables and definitely a lot less organic than when I'm home. But, no weight gain, of course between the hotel treadmill and all the walking outside that helps.
Please keep me posted on your diet and DBS progress. I'm cheering you on!!
I'm curious about one thing, is this weight gain just a temporary thing with DBS or is it different with different people or is it something you have to learn to live with?
All the best,

Betsy

Originally Posted by made it up

Hi Betsy and Damon,
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.

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

Originally Posted by made it up

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 made it up

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

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

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 Betsy859

Hi Damon,

I've been in NYC celebrating my daughter's 25th birthday, going nonstop with NYC marathon and party, theatre, dinners, Knicks Wizards game, and shopping so been out of touch. Reality hits Friday when I go home.
I'm so happy that you've been able to get off some of these IMHO horrible meds.
I'm on relatively low doses of Miraplex (1.5mg) and it's hard now to tolerate the side effects on some days. It's different on different days. Not sure why. So I see BDS in my future but hoping something less drastic can be done in the future. I have the utmost respect and admiration for you and the many others who have undergone this procedure. It freaks me out watching this procedure on YouTube while people are AWAKE. So, I'm happy, from the sounds of it, that you are doing better and able to lower your medication dosage. How is your mobility doing? Is that improving? Are you driving?
As for the diet, It sounds like we are eating the same things. I think the diet I'm on may allow more carbs 50-60 gms per day but I really don't count. I know what to eat and most of the time stick to the plan. Yes, I've read the same literature posted on this forum about this diet being neuro protective but that's what Dr. Perlmutter claimed in his book; that's why I started following the diet.
It gets easier and the desire for all carbs gets less and less, at least for me, the longer I've been on the diet. Even in NYC the past week I've followed the diet except I'm eating more fruit and less vegetables and definitely a lot less organic than when I'm home. But, no weight gain, of course between the hotel treadmill and all the walking outside that helps.
Please keep me posted on your diet and DBS progress. I'm cheering you on!!
I'm curious about one thing, is this weight gain just a temporary thing with DBS or is it different with different people or is it something you have to learn to live with?
All the best,

Betsy