Doing better without Carbidopa/Levodopa...??

[Purple0163]

My husbands Sinemet was slowly increased to 1200 mg per day since his Dx 3 yrs. ago. He was a mess with this high dose. He was falling asleep mid sentence. He had no motivation to do anything. . It did not improve his main symptoms (balance issues, low voice, stiffness, shuffling and feeling “stuck” in a corner, etc). Now we have been weaning off of the C/L and he is so much better. I’m not saying the above issues are not a problem, but they are no different with the decrease in medication. Should I be glad or should I suspect an atypical Parkinson’s. I might also mention that he has never had a tremor. Currently he takes 400 mg of C/L and 2 tabs of Selegiline per day.

[Hidden]

That is what I will ask my MDS in April.

[Purple0163 in reply to Hidden]

Yes. That I will do...just impatient and wondering what you all think.

[ion_ion]

Sounds a lot of c/l after 3 years; I have almost 5 years and I take 3-400 mg / day of c/l for tremor. B1 eliminated all the other symptoms.

[park_bear]

The current dosage is much more in line with this time since diagnosis. If this dosage is helping him it does serve to confirm a Parkinson's diagnosis.

[DroppinIn]

I'd recommend seeing a different physician, e.g. a naturopath who specializes in neurologic issues and has experience with PD, for a more comprehensive holistic approach. If you're seeing a neurologist who specializes in movement disorders they can be fairly one dimensional in their approach, unless they specialize in integrative medicine (which is not that common). Meds are only part of the equation, only address certain symptoms, and really need to be adjusted to the individual, as every PWP is unique.

[ladypeanut in reply to DroppinIn]

Is there a list of Naturpaths that have the background you have mentioned in the United States?

[DroppinIn in reply to ladypeanut]

Not that I'm aware of. I did a fair amount of google research both locally and nationally to find my naturopath.

[ladypeanut in reply to DroppinIn]

I certainly understand. I will do the same. Thank you for getting back to me so quickly.

[Horseriding4]

My husband is also slowly coming off some medication he was taking 200 x 4 per day. Now only 3 x 100. Thanks

[Leslim in reply to Horseriding4]

Hi Horseriding, how the symptoms n any issues u face weaning off?

[Champman]

I had the same experience at 900 mg per day. My blood pressure was next to nothing. I cut back to 300 mg day and got better immediately. Then I told my doctor.

[felixned]

Purple0163, did you have a chance to check your husband's genetic information? FOX used to offer free genetic test through 23andme. if this is not currently available you can still buy it for a reasonable price (< than $200 US). This can give you some insight into PD your husband has. Another question, does your husband suffer from constipation? If so this could be the reason for his poor response to L-Dopa. Interestingly enough constipation could be caused by the not absorbed LDopa that travels into the lower portion of intestine if we are to believe some of the publications. This creates vicious circle: medication is not absorbed because of constipation, your husband is given even more LDopa, more of it is not absorbed and it is causing even worse constipation. Finally could you check if his PD is affected by the food he eats e.g. diary products, meat, eggs etc.

[Purple0163 in reply to felixned]

I will check into the 23 and me testing through FOX. However, he does not have a problem with constipation. Unfortunately his diet is not what it should be. He suffers from Diabetes also, and is not motivated to control his sugar intake. He takes Metformin and Jardiance for that.

[TheGimba]

Hi, My husband had a similar experience in the first few years. He did have mild tremor but his lack of motivation and constant sleeping almost cost him his job. We went to a neuropsychiatrist who specialized in sleep disorders. He gave him a drug to wake him up...modafinil? I believe, we tried a few that helped, but then he needed to get proper sleep at night and they gave him another drug at night...So uppers and downers essentially. This eventually got really ugly, and he got off both but they did help for a period of time when we were really desperate. He had a sleep study and got a CPAP machine which also helped. He has weight issues from lack of motivation and constant sleeping. Sleep and Parkinsons are so connected but you don't hear much about it. I couldn't always relate to the people here because they all seem so motivated to help themselves. My husband was in his early 50's, very apathetic and slept like a baby. In the back of my head I feel like it could be an early sign of dementia. Sadly, he is twice as smart as I am even with brain damage and the future is a little terrifying. He is sleeping now, 7:30 p.m.

[Purple0163 in reply to TheGimba]

Thank you so much for your reply. Our doctor did mention modafinil for his sleepiness, but we decided to drop the dose of C/L first. That definitely helped, so at this point I don't think he wants to add another drug. We seem to have much in common. He was dx. with Parkinsons at 58. He was CFO at an international company. Very smart. The company offered early retirement to certain individuals and he took it. It was then that we noticed his symptoms. He was required to make speeches and give presentations as he transitioned his job to someone else along with being honored for his service to the company. He lost his confidence due to the symptoms that were showing up. Shortly after his retirement we got the official dx. As a caregiver/wife it is difficult to watch this decline. The apathy and sleepiness makes me feel like I live alone sometimes. Thank you for understanding.

[Hidden]

Is that 400mg c/l, come as one dose of 4 tablets? Two doses of 200? Four single tablets a day? Dr. Ahlskog book suggests you may not have Parkinson’s

[Purple0163 in reply to Hidden]

Since my last post, he is now completely off C/L. He only takes Selegeline. He is no worse for coming off the C/L...? I will research Dr. Ahlskog and his book. Thank you.