When to increase dosage of Carbidopa/Levodopa

[LindaP50]

Husband had an appointment with his neurologist a few weeks ago. Hubby does not have tremors and dr. stated he couldn't tell if hubby was getting any worse. Also asked him if he was depressed and he responded no.

Neurologist said well you can up your dosage of Carbidopa/Levodopa - do you want to do that? We both just looked at him and said no. With that he said see you in 6 months.

I certainly could have called office or written a message to the doctor with questions via the portal.

1. Hubby isn't depressed. He certainly has apathy. I am the one to motivate him. Why doesn't the doctor dig deeper or come straight out and ask questions relating to apathy as this is one of the symptoms?

2. Why would we want to increase the C/L? Should we?

Hubby was way "off" yesterday. Going back t festination (standing on toes when starting to walk) and fretting (difficulty walking over thresholds and such). Asked him how he was feeling and said having difficulty. With that I am going to give him one extra C/L this morning. Hubby is on the HB1 protocol (which has done him well).

Ok thanks.

[Juliegrace]

How much c/l is he currently taking? Increasing his individual dose or the amount he takes overall may help with his symptoms.

[LindaP50 in reply to Juliegrace]

Taking 25-250mg 3x daily for C/L.

[Juliegrace in reply to LindaP50]

Did you give him the extra c/l? Was there a difference? Maybe taking one more and moving his doses closer together may give him more or smoother on time.

[LindaP50 in reply to Juliegrace]

Taking an extra pill daily - going to do work in garage today. Let's see how hubby does!

[Hidden]

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic, thirty-years experience.

[Hidden]

You should check with your doctor, but I just want to suggest increasing each individual dose by a half tablet may be better (rather than a full tablet)...

[kevowpd]

"Hubby isn't depressed. He certainly has apathy. I am the one to motivate him. Why doesn't the doctor dig deeper or come straight out and ask questions relating to apathy as this is one of the symptoms?"

You probably need to be a bit more assertive. The doctor isnt going to go through the list of possible symptoms so you need to volunteer information.

The best thing you can do is make a list. It can be quite anxiety inducing sitting there trying to remember every single bothersome symptom youve had, especially when they dont all occur every day.

Write it down, and read the list to the doctor in the order of significance (i.e most debilitating first).

[LindaP50 in reply to kevowpd]

Yes, I should have spoken up. I can send the doctor and nurse a message through their portal.

[islandbird52 in reply to kevowpd]

Good advice. Always make a list of questions, doctors don't always have the time, or inclination, to dig deeper they need a bit of a prod! If they think you have a reasonable insight into the condition they treat you differently I have found.

[LindaP50 in reply to islandbird52]

Yes, doctor's do treat you differently when you are somewhat knowledgeable about a health condition.

When hubby first had Lyme Disease I researched extensively and then went with many questions and research material (to be able to point out articles to doctors). Even the blood test, I read each line and knew if the previous month's blood test differed from the current one and asked questions. Read several books from cover to cover even if some of the medical information was over my head I did get the general idea. One doctor said to me 'you read the book?' Yes, I read the book. You READ it. Yes, I read the book from cover to cover. Then I got the stare. I stared back. My husband was smiling!!!

[islandbird52 in reply to LindaP50]

Well done you!👍😀

[park_bear]

C/L - If his symptoms are generally under adequate control there is no reason to increase his dosage.

[gwendolinej]

Hi Linda, my husband doesn’t have a tremor. His apathy was initially diagnosed as Lewy Body dementia, (2012).Levodopa didn’t and still doesn’t work well for him. The Neupro patch turned him around and he was then rediagnosed with Parkinson’s. His apathy pretty well disappeared.

It came back in 2019 and we then tried mannitol. Within a week his apathy reduced dramatically and gradually many other symptoms disappeared as well. See my post for an in-depth report.

[LindaP50 in reply to gwendolinej]

Much appreciated. Will check out your post.

[LeharLover62 in reply to LindaP50]

I second this, the mannitol may resolve the apathy with no need for more C/L.

For my husband, he no longer takes any , only the mannitol and the B1. But he does still have festination…that’s very hard to treat.

[LindaP50]

Thanks everyone for replying - all a big help.

[Kitefli]

Is he a "neurologist" or "Movement Disorder Specialist"? I suggest you see a MDS. My MDS is very cautious about increasing Leva/Carba dosage, due to future risk of dyskinesia. Although, it depends on individual's symptoms. My tremor is not at all reduced by Leva/Carba; it affects my rigidity and slownness.

[LindaP50 in reply to Kitefli]

No, the doctor is a Neurologist.

Perhaps I should take the time to check our health plan and see if there is a Movement Disorder Specialist available. They are located about an hour away.

Hubby doesn't have tremors.

[JohnPepper]

Hi Linda. THe solution is very simple. Instead of trying to will himslaf to move, as he always has; try to go thtough the following routine:-With you holding his arm. get gime to stand erect and place all his weight on his left leg, lift his right knee and push his leg out oin front and concentrate on landing on his right heel (not on a flat foot).

Then, lift his right leg up and place it in front and land on the right heel.

Keep going by conscentrating on each movement.

His subconscious brain does not work too good, so he has to consciouly walk from now on. Pratice! Practice! Practice!

If he succeeds then let me know and I will help him do other things as well.

TRy to use less levedopa meictaion, its working period gets shorter and shorter. He will then get no benefit and that's it.

When he is consioiusly walking on his own again he should start doing fast walking, every second day. I will tell you more if you contact me,

Good luck!

[LindaP50 in reply to JohnPepper]

Thanks for your email. I do have instructions from you from a few years ago.

I will remind him to concentrate and tell him of the step process you mentioned.

Hubby did go to therapy to walk prior to Covid. He went to Loud and Big (voice and steps). He became confident with walking and would fall more than usual. Therapist said that was normal. The process of getting up is hard - we use the chair method. Hence, he walks slower as he doesn't want to fall. He's happy to be walking. I'm still concerned with the walking on tip toe and the hesitation. Did add one table of C/L for a few days. The jury is still in on that process.

[JohnPepper in reply to LindaP50]

Hi Linda. It is difficult not being able to see or speak to your husband,

I think he has not yet mastered the abilitly to convcentrate on each movement. He is possibly willing himself to walk instead of telling each limb to move where and how he dictates.

If he is concentrating on each limb he should be mentally telling the one leg to carry his weight while he tells the other leg to bend the knee and his grounded leg to push his body forawrds, while he is moving forwards he should be thinking of straightening the leg and landing on his hee' . If he is not doing that then he is not understanding what I mean by 'Conscious VControl of Movement'!

Keep talkinf to me.

[LindaP50]

After reading posts and getting messages from some of you - ordered Mannitol from Mannitol Balance (Phoenix AZ) state to use 1.5 teaspoons. On 2nd day - put the 1.5 teaspoons in hubby's morning beverage (tea/coffee). States it tastes fine. Here is hoping for some results with his apathy. 🤞

[LindaP50]

Update 1/18/2022 - Mannitol works well.

Neurologist left the practice. Have an appointment with a Neurologist who specializes in Movement Disorder. I have my list of questions and concerns ready. Staying positive and hopeful.