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Weakness from PD?


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#1 miracleseeker

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Posted 29 July 2011 - 11:58 AM

Hi Dr Okun,

Yesterday morning my mom did not swallow any of her meds which consists of 50mg Stalevo, 25/100 Sinemet, .37mg Mirapex, and 10mg Namenda. I discovered this an hour after I got her up from her usual rest time after taking them and had her brush her teeth. All the pills were foamed up in her mouth with the toothpaste. Since I couldn't tell how much had been ingested I just let it go. 6 hours later while she was leaving the daycare center she couldn't walk at all. It took 2 workers and my caretaker to drag her to the car to go home. Once she got home she was weak like a wet noodle and slept mostly for about 15 hours straight. I got her out of bed and into the living room to take her evening doses and when I tried to get her up once again to go back to her room she just dropped to the floor. I spent 40 minutes trying to get her up but she was dead weight. This isn't the first time she's slipped down to the floor from a sitting or standing position but at least in the other times she was awake and willing to help me help her up. I ended up calling the caretaker to come back and we both got her off the ground and into her bed.

At first I thought it was due to me removing the extra .37mg of Mirapex from her evening dose the prior night since you mentioned people with cognitive problems and sleep attacks should limit their intakes of Agonists. So I substituted it with an half a 25/100 Sinemet. So last night I had her take the extra .37mg of Mirapex again and this morning she seemed better. She's no longer dragging her feet but now she walks more like she's bowl legged. I don't know if she is better off taking the Sinemet by itself and not combine it with Stalevo as she's done the past week. Since she still chews it or lets it dissolve in her mouth it might not be working effectively for her. What are your thoughts? Can someone under medicated get weakness in their legs and sleep non-stop from lack of dopamine in the brain? But just from missing one dose? I thought Mirapex stays in the system longer than Sinemet.

#2 Dr. Okun

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Posted 30 July 2011 - 08:35 AM

As PD progresses the half life of sinemet and also agonists decreases and can be very short.

Missing doses sometimes leads to severe freezing and sometimes lands people in the emergency room. I usually advocate rescue doses of levodopa (crushed in ginger ale). If she is having trouble swallowing mixing crushed pills in apple sauce or switching to the dissolvable sinemet (Parcopa) can be helpful. Also an apomorphine injection first thing in the morning could be useful.

We prefer in the situation you describe-- to get people off agonists and titrate the sinemet to the correct dose to avoid cognitive issues and sleepiness. Also, we usually give more than two doses a day. Hope that helps.

These are all things you can discuss with your doctor.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#3 miracleseeker

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Posted 30 July 2011 - 08:45 AM

Well the intersting thing is she took 50mg Stalevo, .375mg Mirapex and 25/100 Sinemet when she got home from the daycare center and she was not better. It was after the next dose in the evening and sleeping some more before she was finally awake and moving a little better. I gave her the extra .375 Mirapex last night and this morning she's moving freely once again. Even though Mirapex is bad for the mind, it's great for her movement.

She is having a lot of incontinence at night while she's in bed. Mostly it's because she's not able to get up to the bathroom herself or yell out to me to let me know she needs to go. Her doctor does not want to prescribe any medication for this because it will make her more confused. Do you prescribe any incontinence meds for PD and dementia patients? Which has the least amount of side effects for my mom's situation?

I truely believe if she doesn't take any medications then her mind will be back to normal but unfortunately I can't very well test that theory out.

#4 Dr. Okun

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Posted 30 July 2011 - 09:19 AM

I would have to cast doubt that her mind would be normal off meds-- but I am just writing from behind a computer and an in person exam is always best.

Sometimes after being off a long time just restarting meds does not work and you actually need a rescue dose crushed, or apomorphine.

Incontinence is usually addressed by anticholinergic drugs which really affect memory and can cause confusion in many Parkinson's patients--so we very carefully and selectively use them.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#5 miracleseeker

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Posted 30 July 2011 - 11:18 AM

The reason I suspect the dementia is PD meds related is because it hit her around the time she was overdosed on Mirapex and even though I've tried to titrate her down she can never go off of it completely. She really benefits from it aside from the sleepiness and confusion.

My mother's incontinence is getting worse. I take her to the bathroom 2 times a night and that's after she's already gone in her diaper(s) and liner and sometimes onto her pajamas and she still has more to go once she hits the toilet. She never needs to go before she goes to bed at 8 so being the last time she peed was around 5 pm then it's understandable that she would be going in bed 6+ hours later. Unfortunately like I said earlier she won't let me know that she needs to go so she just lets it out. This morning was a gusher. The whole liner was drenched and her diapers were a big wet mess. I don't even know how long she had been laying on top of that since she won't get up until I get her and it was 3:30 this morning when I got her up. She just laid there staring at the ceiling with her knees raised and feet on the bed to avoid the wetness. It was only a year ago that she would get up on her own but on her way to the restroom she would get side tracked and start making the bed and then pee onto the carpet. She meant to go but lost that thought so the body and mind are no longer in sync. Now she doesn't even bother to get up.

Good news is that she swallowed the Stalevo this morning and was alert and walking on her own freely and even got out of the tub on her own after a much needed bath. She usually requires my help to get up and out. I suppose i have the right dosage for her PD meds now and will continue to have her take them in this manner. Of course whether she will swallow the next one and the next one... is the $25,000 question of the day.

#6 Dr. Okun

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Posted 30 July 2011 - 03:26 PM

You may want to see a speech pathologist and consider swallowing therapy (a chin tuck behavioral intervention or what is called an expiratory muscle strength trainer).

There is a withdrawal syndrome called the dopamine agonist withdrawal syndrome described by Rabinak and these folks need very slow withdrawal.

Finally, I should comment that as PD progresses some people do get "clearer" in the head with slight dose reductions in dopaminergics.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#7 miracleseeker

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Posted 30 July 2011 - 07:41 PM

Unfortunately these are things that's not possible due to her dementia. She cannot follow directions nor will she respond to requests. She couldn't get an eye exam or do a mamogram because she won't cooperate. I was lucky she sat still long enough in the dentist chair to remove some very badly rotten teeth and now she has trouble eating because she chews in the front of her mouth and that's where the missing teeth were.

Strangely enough when she was on 6 25/100 sinemet a day she stopped talking but when I reduced it down to 5 a day she would start talking here and there so it seems it's not the agonist that's causing her speech problem but.... I do agree that it is the agonist that is the cause of her confusion. I don't know what i can do about that since she really needs it to complement the levodopa

She still gets the shakes on the left leg about 4-5 hours after taking her meds. It's more of a pulsating movement that lasts about an hour. It's very upsetting to watch because I know it's exhausting her. Her doctor said it's quite alright to get that because it's bearable. Really? I wonder if she could say the same if this happened to her.

I know the latest drug that may hit the market by the end of the year or early next year is from IPAX laboratories but it's a time release version of Levodopa which means no chewing or crushing so it's basically not going to work for my mom. We can really use a miracle right now. Thanks for listening.

#8 Dr. Okun

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Posted 31 July 2011 - 09:15 AM

Another option is to get a second opinion on her care,

Hang in there.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#9 miracleseeker

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Posted 31 July 2011 - 10:30 AM

Here's the thing about 2nd opinons. If the doctor agrees with the current doctor's regimen then it's fine? If the doctor has another treatment option then follow that one instead? How does a patient know who is the better doctor? My mom's current doctor was a second opinion and she agreed with my mom's former doctor's treatment. Unfortunately it seems all the doctors had the same basic treatment plan and none are working right. There's only so much a medication can do because unless a cure is available everything else is just buying time.

My mom is still having trouble balancing herself and walking unassisted. Is she undermedicated?

#10 Dr. Okun

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Posted 01 August 2011 - 11:55 AM

Walking and balance issues are not always simple under-medication.

I disagree a bit on second opinions. I think you have to choose carefully a doc who has a ton of experience in the field and a reputation as a referral source for PD. These docs can usually be objective. SOmetimes, both docs can be right.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#11 miracleseeker

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Posted 01 August 2011 - 12:10 PM

In our situation the former neuro is older and has been in practice longer but.... doesn't mean he's better. I think he just has patients that are so old already that their family won't take the time to research the disease so they listen to everything he says and never disagreed with his methods when something goes wrong. They just assume that's just the way the disease progresses. If I hadn't stepped up my mom wouldn't be alive today due to his misguided treatments. If both of them are right then there's nothing left to visit because we have now run out of medications for my mom to try.

This past weekend my mom swallowed her medications voluntarily and the results have been amazing. She's walking and talking more than before but still has trouble getting up but otherwise I am very happy. It doesn't take much to make me smile and be thankful she's alive and as well as she can be. Yesterday I gave her some slices of mango to eat. When I asked her if they look good she responded with "yes the color is pretty" Usually all I would get from her is a yes. This tells me she's giving thought to her answer and most importantly comprehending my question.

#12 Dr. Okun

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Posted 02 August 2011 - 10:14 AM

Sounds like she is doing much better and that is a blessing!

Thanks for sharing.

I should mention to the readers that fluctuations in levels of consciousness in the elderly can actually be seizures---even if the EEG test is normal. Sometimes a 24 hours EEG (home) or a trial of anticonvulsants is necessary. Little seizures can cause these fluctuations. In this case it doesn't sound like this--but I wanted to mention.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips




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