RE: Alternative to Carbidopa/Levodopa?

[Guest guest]

Hi Tim,

My mil has glaucoma and she has been taking the carb levo without any

trouble. She gets an annual checkup to make sure things are ok and since

she was diagnosed and began taking it 5 years ago, she has had no changes in

her glaucoma. She was diagnosed with glaucoma 13 years ago and takes

Lumigan each night (a drop in each eye). When she began taking the carb

levo she had an eye exam every 6 months to see if there were any changes.

She did this for two years and there were no changes at all so now she is

back to her regular annual exams.

If your father was diagnosed with narrow angle glaucoma it would be

something to consider carefully. If he had another type of glaucoma

diagnosed it would be something to discuss with his ophthalmologist but

usually concerns can be addressed with more frequent eye exams.

If he has not been diagnosed I would think it would be safe to take - and

just get an annual eye exam as recommended. If he is really worried about

it could cause glaucoma he could just go every 6 months for checkups. That

would certainly be adequate to catch any changes that might happen.

Because my mother in law has glaucoma I read up on the literature and also

talked it over with the two eye doctors we have in the family and both

agreed the benefits of taking the carb levo was so much that it outweighed a

small chance of a side effect of worsening of her glaucoma and with frequent

regular checkups any changes would be found quick enough to discontinue the

carb levo. I am really glad we made the decision to stay with carb levo

because she was able to do more physical activity - namely intense physical

therapy, exercise, walks and that today is really paying off in huge

dividends. In her late stage she can still manage to walk with

assistance, she can still hold a glass of water and drink it and she can

help us with her turning and other things. Had she not been able to meet

the recommendation of her neurologist team of " aggressive physical therapy "

for the last several years she would not be in as good of condition as she

is now. If she was not taking carb levo, for whatever reason, she would not

have been able to do the physical therapy program she did all this time.

I do not know of any other drug that does what carb levo does for the brain.

It will reduce tremors and make movement easier to manage. Without it

people with this illness often have a lot of tremor but also have difficulty

moving, especially lifting feet to walk. There are different doses and

starting off at a low dose to see how he does with it might not be a bad

idea. It should be spaced equally around the clock. My MIL has NOT tried

the timed or sustained release form - we are just sticking to what we know

works for her.

Another thing that can help is Exelon patch (again starting off on the low

dose to see how he does). My mil has this also and I wish she had been

offered it much sooner - I truly believe for her it has been extremely

helpful and I believe it would have enhanced her quality of life had she had

it earlier. It helps memory and with her it worked miracles. Some report

problems with the pill form but many do have success with the patch. If

you notice your father having trouble remembering you might want to ask

about it, even if it's early on in the game.

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of thahalibut

Sent: Friday, October 21, 2011 4:57 AM

To: LBDcaregivers

Subject: Alternative to Carbidopa/Levodopa?

My father was diagnosed with LBD last week & was prescribed

Carbidopa/Levodopa. When reading it it can be a problem with certain types

of glaucoma he decided not to take it. We made an appointment with the eye

dr to see if my dad has glaucoma. But by the time we see the eye dr, then

back to the nuro dr, it will be 3 weeks or more. I don't think its a good

idea to wait that long. Does anyone know if there is some other drug we can

start with? He is currently taking nothing for the Parkinson's/LBD.

ty

tim

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