Hi Laura,

Thanks for the reply.

Yes, she has started the levodopa. Today (Sunday) is the seventh day she has been on the medication. She has been able to take the prescribed three pills per day, without any issues in her stomach. She mentioned that on occasion, it makes her feel a bit drowsy.

I see my mother on weekends. In my honest opinion, I feel that I see more "personality" in her face, she appears to be more talkative, and her voice seems a bit stronger. In terms of her mobility, we have not seen any increase nor decrease in her condition when compared to before she started taking the medication.

She claims that the very little resting tremor that she had, has gotten better since she has taken the medication. I walked in today and saw her lifting three pound weights to strengthen her arms. Yesterday afternoon I had made her soup, and she was able to lift the soup bowl up to her mouth with both hands to finish the broth. Both of these tasks, in my opinion, were more difficult for her to do prior to starting the medication.

I also help organize my father's medication every Sunday. My mother and I do this together. She knows what pills he takes, I simply listen and put them in the appropriate container. We use those M T W T F S S containers, which for some people, including my mother, are difficult to open. I walked into the kitchen today and she already had them open for me.

So, at this point in time it appears as if there are minor improvements since she started the medication. The initial trial is 30 days, and our next appointment with the neuro is on the 1st of March. I hope the next item we start to notice is an increase in her mobility.

Thanks for the continued support.

Matthew

Hi,
It does sound as though your mom is responding some to the medication. Drowsiness is not unusual. I am very close to your mom's age, and when I started on sinemet did so on the same dose.

I had symptoms for quite a while prior to being tried out on medication and initially though it did feel good that I could do some things again I do not think others could see the improvements I felt. It felt like it took time for my dopamine starved brain to start to get back into balance.

The little improvements you feel you can see may be a positive sign for pd. But that is for your mom and her neuro to decide. I wanted to say that overall I have had way more improvement since those early days, though it did take time, and some effort to get things working better for me. Today I am a lot more functional than I was then, some of the improvements surprised me as I had not noticed everything that pd had been taking away from me.

It was crucial to my improvement that I understood what was happening to me, this forum was an immense help, supportive and informative at the same time.

I hope if this is pd you are seeing in your mom, that she too finds a similar improvement, and wish you both the best in getting things sorted out.

Keep in touch and let us know how things are going.

Lindy

Hi Lindy,

Thanks for the reply.

I think what my mother misses the most is driving. She has not driven a vehicle since April 2009. Our biggest concern is that she needs to gain the mobility and dexterity in her legs and arms before she could operate a vehicle. Her complaint that the message to "move" that her brain sends to get legs does not get there quickly enough. Well, the message from the brain telling he foot to move from the accelerator to the brake pedal is crucial!

Hopefully the mobility will come back and we will be able to take her out driving again.

Hi,

I was looking at a citation list on PD and and DBS surgery, when this I noticed this title sounded familiar:

Naloxone-responsive acute dystonia and parkinsonism following general anaesthesia. Chaves, et al. 2009 "Anesthesia" journal

Various movement disorders such as dystonia may acutely develop during or at emergence from general anaesthesia in patients with or without pre-existing Parkinson disease. These movements are triggered by a variety of drugs including propofol, sevoflurane, anti-emetics, antipsychotics and opioids. The postulated mechanism involves an imbalance between dopaminergic and cholinergic neurotransmitters in the basal ganglia. We report an acute, severe and generalised dystonic reaction in an otherwise healthy woman at emergence from general anaesthesia, dramatically reversed by the administration of naloxone, pointing to a potential role of the fentanyl and morphine that the patient had received. Recent literature on the mechanisms of abnormal movements induced by opioids are discussed. The severity of the reaction with usual doses of opioids, in a patient with no prior history of parkinsonism, led to further investigation that demonstrated the possibility of an enhanced susceptibility to opioids, involving a genetically determined abnormal function of glycoproteine-P and catechol-O-methyltransferase.

While yes, this seems out there; I thought of your mother and how her symptoms seemed to really emerge right after surgery. I think the full text is available through Pub Med; you may want to print it out and share it with your mother's doctors. This abstract implies that her current condition may be reversible.

It sounds as if your mother is feeling more normal. Many of us function at normal or near normal levels when using medication like Sinemet; I do hope that she gets back to that point soon and feels welll enough to try driving again.

Best,

Laura

Hi Laura,

Thank you for the reply, and thank you for thinking about us.

I have forwarded the message to my father. I plan on discussing the information with my parents this weekend.

Thanks again,

Matt

Hi All,

I wanted to provide you with an update. Below is a copy and paste of the journal I have been keeping regarding the differences I have seen in my mother since she has been taking the carbidopa / levodopa. Note that there is some overlap between what you will see below, and some results that I made in a previous post.

Also, my mother's second neuro appointment is tomorrow morning. She has a copy of my journal in addition to the article that you guys provided to me a few weeks ago.

My journal:

On Saturday feb 13th I noticed more personality in her face and she seemed to be more social and talkative. She also gave mention to the fact that she felt the tremors in her hand were more controllable.

On Saturday february 19th I noticed more personality in her face again, she again seemed to be more social and talkative. She appeared to be moving around quicker. On this evening she was able to put both legs up by herself. She drank wine with me this evening.

On Sunday february 20th I noticed the same as on feb 19th. She again was able to put both legs up by herself. She is now opening pill bottles by herself. We made changes to dads rx document today, and she hand wrote the changes. Her hand writing is still a little sketchy. When I called her this evening to tell her about brians gift to me she really had a lot of emotion to her voice, more than I have heard in months.

I have also generally noticed that when the drowsiness of her meds kick in, she has very sudden, blatant yawns. I can't say I have ever seen her yawn like this.

End of journal.

After talking with her this weekend, she claimed that this past week she felt a little "off", and that the prior week she feels that she felt better when compared to this past week. She asked if the Rx she is on has a higher dosage. My answer was, most likely, and that the dosage she is on right now appears to be the basis starting dosage for people in her situation.

When talking with her last evening, she was telling me a story about when my parents enrolled me in pre-school back in the 80s. She was describing the pre-school that I attended, and placed great emphasis on certain words in her sentences. I have not heard her place emphasis on words like that in months.

As I mentioned earlier, her second neuro appointment is tomorrow. I felt it was a good idea to provide her with the small journal I have been keeping. I am also updating this thread as often as possible because it will also serve as a documentation reference as we continue moving forward.

Thanks again to all for your continued support.

Matthew

Hi Matthew,

I have been hoping you would check in with us and wondered how your mom is faring. I think the journal is a fantastic idea and one that becomes even more important to maintain as things advance and medications become more complicated; this is of course, if the neuro determines it is indeed PD and symptoms eventually advance.

It sounds as if your mother is doing world's better although not quite back to where you would like to see her. Sigh- PD, very stealthily and slowly, tends to rob of us of things we take for granted. It's amazing how the medication can restore us to near optimal levels, sometimes we get caught up in the bigger, more disabling symptoms and lose sight of the little things like you note voice inflection or emphasis, and "color", or expressing emotion. Oddly, we don't always note that we are losing these things; it takes a close family member or friend to comment and note when they are lost or regained for us to even register the loss.

Your mother is currently taking Sinemet 25/100 three times daily? This is a very normal starting dose and if the CR is used and works well with her system (we don't all metabolize this the same way), she may see some extended benefit. When you do take note of her in your journal, you may want to keep track of how she is toward a dose ending. Sinemet has a very short half life of an hour and a half or so. I think when people first beging using it they see benefit from 3-5 hours, so you may want to ask her questions as to how she is doing near the end of a dose or observe and take notes only to get a baseline reading of how long a dosage benefits her. This may help in her med management too down the road.

Good luck with the neurologist and let us know how it goes.

Laura

So good to hear that your mom is receiving some benefit from the medication. Laura has already responded to most of your post about her progress - however both posts took me back to my own early response to exactly the same dose that your mother is taking. At the time I felt as though there was a certain magic in the way it had eliminated some symptoms, but with hindsight there were others that took longer to respond, and some never did. So you do need to give it time, too, for the benefits to come through.

I am so pleased that those subtle things are returning, PD is a bit like an eclipse, where life and color seem to drain away and everything becomes unnaturally quiet and still - we are fortunate in that there are medications that can help reverse much of this.

Lindy

Hello All,

I am leaving for a business trip to Las Vegas tomorrow afternoon, and realized that I had not provided an update for a week or so.

My parents went to my mom's second neuro appointment. My parents provided my journal to the neuro, and the neuro thought it was a great idea. All of the progress that I described in previous posts, and included in the journal, was agreed to by the neuro. The neuro said she saw the exact same positive changes in my mother that I had noticed over the last few weeks. My father actually told me that the neuro said, jokingly, that all my mother does is "gab" now!

The neuro is going to start my mother on a CR drug fairly shortly. If I understand my mother correctly, the CR drug is going to be taken in conjunction with the original Sinemet 25/100 that she is currently taking. Does that sound right to you guys?

I have been reading all of your posts back to my mother and I know that it brings her great hope. I read her one this afternoon and she completely agreed with the 1/2 life of the medication dosages and trying to determine those exact "times" to take the drugs so that the "crash" is as minimal as possible.

I believe the next neuro appointment is scheduled for April. My father asked the neuro if she was leaning towards a PD diagnosis given the fact that the levodopa / carbidopa started to show some relief for my mother. The neuro said that she is leaning towards that, but she feels it is still too early to tell.

Thanks for the continued support.

Matt

Hey Matt,

I am glad to hear that your mother is doing so well! It sounds as if she has a very astute and caring neurologist; this combo can be difficult to find in many doctors.

I have taken both regular IR (Immediate Release) Sinemet and the CR concurrently. Many times, a half tab or sometimes full tab of the IR is needed in the morning to jumpstart the CR. Do not be surprised if the CR dosage or strength is a little higher at 50/200 - there is sometimes a need for more because of the lower bioavailability of the slow release formulation - this, I think is fairly common.

Does your mother find that her meds tend to fade out at the 2-4 hour mark? I think the CR may give her another hour of relief and help with that fading effect. If you think that she will be using these drugs long term, please check into the generic drug thread that just started- this is something you might want to print out and have for reference down the road.

Sounds like your mother has mad great strides in many ways; it really sounds as if she's recaptured a joie de vivre that was lost. I hope she will continue to make improvements; it's amazing how Sinemet can really give us our lives back- for some of us it's slow and steady, while in others there is a dramatic difference.

Best,

Laura