Mother with PD or PS Symptoms
 

Hello,

This is my first post. I am posting because I am a 26 year old son of a 59 year old mother who has been exhibiting symptoms of PD or PS. I will try to provide as concise of a summary as I possibly can. I am making this post in hopes of receiving replies from individuals that have been through similar issues. I understand that there is a world of knowledge on this forum and I am anxious to read the various threads.

First:

My mother had a spinal fusion surgery in April of 2009. Her first day in recovery I noticed an uncontrollable shaking in her left hand. Her speech was soft and greatly attenuated, and she complained of extreme hearing loss in her left ear. The doctors evaluated the hearing loss and had no explanation as to why the hearing loss had occurred. To date, she has regained approximately 60% of the hearing loss she realized.

We brought her home from the hospital about 1 week after the surgery. She was attending physical therapy, and living on the first floor of our home in a medical bed for awhile. By May, she was living on the second floor of the home, was able to walk around with a walker, was able to take showers, and was showing progress. The shaking in the hand had settled, but still surfaced, on occasion. Her voice became fairly stronger, but started to become monotone.

In July, she started complaining of extreme pain in her lower body and down her left leg. After months of tests and evaluations, it was determined that she needed a second spinal fusion surgery. At this point in time, she was was able to climb steps, one at a time (going up) and came down the steps on her butt, one step at a time. She was still showering by herself, and walking around with a walker.

Second:

She had the second spinal fusion surgery in October of 2009. She was then placed in an outpatient rehab center for a week, which was a terrible experience. I noticed that while she was in the rehab center, her legs and feet were extremely swollen, and just looked much phyiscally larger than they ever had before.

We brought her home from the hospital 1 week later. She immediately attempted to climb the stairs, and froze 1/2 way up. My father and brother carried her back down. She requested to go to the hospital because her lower body was frozen. We took her to the hospital. They put her on a dieutretic, and confirmed she had no blood clots. As a side note, after her first surgery, she was put on a blood thinner. The blood thinner caused an issue with her incision opening up. To shed caution on the issue, after the second surgery, they opted not to put her on the blood thinner in hopes of not having issues with the wound. At that point in time, we chalked up up the swelling of the legs and feet to fluid retention. We brought her home from the hospital the following morning.

Since October, her mobility has decreased. She still walks with a walker. She takes about 6 shuffled paces, stops, then takes 6 more. She still lives on the first floor of the home. She has developed more of a monotone voice, and she has a blank stare on her face. She walks with a gait. She does not have as much of the hand shaking as she did after the first surgery. Her hand writing is small and cramped.

A doctor in passing requested that she have an MRI of the brain and neck. We went to a neorologist for the first time yesterday morning. The doctor spent 2 hours with us. She performed physical tests, a hand writing test, asked a lot of questions, and did a lot of listening and wrote a lot of things down. We left with 2 prescriptions. The first prescription was called in to our local pharmacy. The second Rx was provided to us in writing, to be mailed in to our mail-in Rx filler for a 90 day supply, after the initial 30 day supply is done. The doctor did talk about PD or PS, but said it is too soon to form a conclusion, and that she wants to take baby steps in determining the exact problem, but obviously did state that her symptoms are that of PD or PS.

The mail-in Rx reads:

Sinemet cr 25 mg 100 mg tablet cr

The regular prescription that was filled ended up being the carbidopa levodopa 25 mg 100 mg tablet.

I noticed the difference in that the currently filled Rx is NOT Controlled Release, but the future, 90 day Rx is indeed Controlled Release.

I am sure I left out some details, but that is where we currently stand. I spoke to my mother this afternoon and she said that she has taken the current medication, as prescribed, and only really felt some drowsiness.

My argument all along, perhaps due to denial, is the fact that these symptoms I describe were never present, with minor exceptions, prior to her spinal fusion surgeries. I explained this to the doctor, and the explanation was that perhaps being a 59 year old experiencing severe back surgery, the surgeries simply masked and provided an excuse for the PD or PS-like symptoms. Perhaps the surgeries were literally "jump starters" of the actual PD or PS.

I am looking for anyone who may have some input in terms of their experiences with similar symptoms, PD versus PS, their experience with the above-referenced medications, etc.

What can I do as a son to better educate myself on a future diagnosis of PD or PS, and help to provide as much of a life as possible for my mother?

Our hopes are, regardless of the diagnosis, to find the correct dosage of medication which will allow her to gain back her independence, increase her mobility, and get her doing the things she loved doing before all of this.


Thank you for your time.

Matthew S
in PA
{PM or email thru member's profile}

It is hard to say...yes, it sounds as if your mom has classic PD symptoms. It is not unusual for a major stress on our systems to induce PD- I have heard of it emerging after a car accident, divorce, etc. What is highly unusual is the sudden onslaught of multiple symptoms at once. PD is usually pretty slowly progressing and when things like freezing or balance are at play early on, neurologists are (in current practice) urged to examine other conditions that mimic PD.

A few things come to mind:

1) Have all your mom's meds been carefully scrutinized? Some meds can cause Parkinsonian symptoms, so maybe research each surgery or back related one.

2) Is your mom being seen by a neurologist who is a Movement Disorder Specialist? This is imperative.

3) Would insurance cover a PET scan of the brain to check for dopamine levels?

4) There is a condition that mimics Parkinsonism but is reversible. Is it encephalitis? Anyone know of this?

Levodopa or therapy with Sinemet should improve your mother's quality of life if it is indeed PD. Here's hoping you find some answers soon.

Hope this helps a little.

Laura

Laura,

Thank you very much for the reply.

Answers:

1. The current medications that she is taking, were obviously written down on the forms that were required to be filled out prior to seeing the neuro. She takes pain medication, as needed, calcium pills, and she was taking a pill for incontinence, which is also another PD symptom.

2. I am not sure if the neuro is a movement specialist.

3. I am not sure if the insurance would cover a PET scan. So, a PET scan is a specific brain scan which checks for dopamine levels? To my knowledge, all she has had thus far has been an MRI of the brain, as well as an MRI of the neck. The doctor has also requested to see the MRIs of her back, prior to the surgeries.

4. Interesting, I have never heard of this.

What are the typical steps that neuros take before formulating a firm diagnosis of PD?

PD in the States is largely a clinical diagnosis meaning that the MDS looks for presence of 2 of 3 cardinal signs (bradykinesia, resting tremor, and rigidity). They take into account patient history as well. Once an MRI rules out any other abnormality depending on symptom history, age, etc. they then diagnose. Obviously, we need better diagnostic tools like a blood test or something. The PET scan is routinely used in diagnoses in Europe but not in the US, unsure of Canada. This means to get one, you may have to pay out of pocket, or it sounds like you have an unusual enough onset to have your insurance cover it. The neuro will issue a dopamine challenge by prescribing Sinemet to see if patient has relief from symptoms...this can be the deciding factor in a yes or no diagnosis. In other words, a positive response may likely mean PD.

Laura

Laura,

Thanks for the reply.

It sounds to me that a diagnosis of PD is more or less process of elimination. If all other options are ruled out, it must be PD.

Does anyone know the main difference between PD and PS?

That's it
 

Hi,

You are spot on. Yes, PD is primarily a diagnosis by exclusion.

I think by PS you mean Progressive Supranuclear Palsy or PSP? From what I understand though there is some overlap in symptoms, largely tremor is absent from PSP. Please see the following sites for more info:

http://www.ninds.nih.gov/disorders/p....htm#139803281

Parkinson's Information Network : Differential Diagnosis

Laura,

Thanks for the reply.

When I refer to "PS", I am referring to Parkinsonism, or Parkinson's Syndrome, which to my understanding, is a bit different from PD, or Parkinson's Disease?

Differentiating PS and PD
 

Parkinson's Disease is sometimes also called Idiopathic Parkinson's Disease, basically meaning of unknown origin, while PS or parkinsonism mainly refers to a condition on the Parkinson's spectrum that has a known origin, like exposure to particular chemicals, maybe from industrial or work related exposure, or medication, or as a result of TIA's,injury or illness,etc. among several other things. PS is sometimes considered to be either less responsive or non-responsive to dopamine replacement therapies dependent on origin of the condition. There are also Parkinson's plus conditions, of which there are several. They are a range of symptomatically similar conditions that over time differentiate into more recognizable and nameable conditions, that have characteristics of their own. PD itself is by no means clearly defined or definable, and when a diagnosis is unclear it is quite often called atypical, though that is a word that can sometimes be used for PS and P+ type conditions too, making the terminology slightly confusing. All in all IPD is difficult to diagnose, MRI's are used to exclude other conditions, and PET scans are used to firm up an IPD diagnosis or rule it out. Even so a diagnosis is usually arrived at through a combination of scans and long term observation, unless there are unequivocal signs that PD or another parkinson's type condition is present, which does sometimes happen!

Many of us have learned through experience that diagnosis and treatment can take time to get 'right', and some of us live with a 'possible' or 'probable' diagnosis. If your mother responds well to the medication (sinemet) she has been prescribed it is likely, though not definite, that she has PD.

While there is a process of elimination that goes on, it is unlikely that 'all other options' can be excluded completely at such an early stage, so the aim will be to get as close as possible and find a treatment regime that gives the best possible quality of life.

Hope this helps
Lindy

Hi Lindy,

Thank you very much for your reply.

The information you provided is very concrete and makes complete sense.

It may sound odd, but the profession I work in is of a technical nature, and sometimes requires a great deal of equipment troublehsooting. As I have been reading about PD and the steps required to form a diagnosis, I often relate such a process to the technical troublehshooting process I often find myself performing as part of my job. I too perform tasks that "rule out" potential problems, which puts me one step closer to determining the cause and solution to particular problems. It sure sounds like forming a diagnosis of PD or PS is more-or-less a "troublehshooting" process and includes a plethora of "ruling out". Unfortunately with PD or PS we are working with people's health and lives, instead of equipment.

After I read your post, I thought back to some of the discussion points our neuro was speaking in regards to, and they are really starting to make sense. Since her symptoms are pointing in the direction of PD, the next step, including an analysis of the MRI, is to start taking the Carbidopa/Levodopa to see how my mother reacts. If her condition "gets better", we are one step closer to a PD diagnosis. If her symptoms remain the same, we have decreased the probability of a PD diagnosis, and we start looking at other potential issues.

I must say that after joining this forum, in addition to other readings, I have faith in the neuro that we are seeing. Over the years I have come to lose trust in the integrity of certain doctors, but in this case, I am trying to remain optimistic.

Whatever the case ends up being, I can only hope that the medications and treatments available will help in providing her the ability to live the life that she is used to living.

Thanks again for the reply and support.

Matthew

Lack of Specificity
 

Matthew,

You've come to the right place for information; your mother is very fortunate to have you advocating for her and educating your family as she is evaluated and ultimately diagnosed one way or another, so she can start proper treatment.

What Lindy says is entirely true; what makes this diagnosis so frustrating is the lack of specificity. It is entirely possible to see seven different neurologists and end up with just as many opinions on PD or Parkinsonsism.

Quite honestly, I think in a very literal sense, it is possible to say that we all here have Parkinsonism. From my understanding, we are never definitively diagnosed with Idiopathic Parkinson's Disease until/unless we have an autopsy. Historically, IDP has been confirmed during autopsy with the presence of Lewy Bodies, basically monstrous, malformed protein clumps; essentially the hallmark of the neurodegenerative cascade that takes place. There are people diagnosed with PD who upon autopsy show no Lewy Bodies and technically do not have the disease, although they may sure looked like it when alive and indeed responded to levodopa therapy!

As Lindy says, largely it is a spectrum disorder, and many progressive neurologists are starting to see it as such. We may all experience different insults to the brain (think Muhammed Ali vs. Michael J. Fox), but end up manifesting the damage with the same cluster of symptoms. In people who end up with young onset disease, it is generally considered to be more genetic with an environmental trigger. In later onset, it is considered more environmental than genetic. For a recent study that shows alarming numbers implicating air pollution and pesticides as environmental triggers, see the following study conducted by the University of Washington (St. Louis).

Pardon the digression, but we clamor for any epidemiological study we can find as they are scarce to non-existent. I just wanted to say that yes this fuzzy science in diagnosis and treatment is very frustrating. Hang in there, persist, ask lots of questions. It is good that you trust the doctor; I'm right there with you on general suspicion in their regard, and it's important that you feel you are working with an expert who has your mother's best interest at heart. Do know that if it is PD, she should regain some sense of normalcy and enjoyment in things she once enjoyed.

Has she already started the levodopa trial? Have you or she noticed any improvements?

Laura

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

response to medication
 

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.

Wondering...
 

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

Journal is a great idea
 

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

Glad you checked in
 

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

Hello All,

I just got back from Las Vegas on Friday evening and thought it would be a good idea to post an update.

Laura - to answer your question regarding the "fade out" period, yes, my mother does experience that.

To summarize the original Rx plan the neuro recommended:

My mom started on a 30-day supply of the Carbidopa / Levodopa 25/100. Once this Rx ran out, my mother was to mail-order a 90-day supply of the same medicine.

At the same time as the 90-day of the carbidopa / levodopa was mail-ordered, a second Rx was either written and/or mailed-in for the "ER" (extended release) version of the medication. I believe the dosage, 25/100, was to be the same for the ER as the regular release.

Long story short, the mail-order company got some "wires crossed" some where and we ended up with (2) 90-day supplies of the ER pills. It took a day or two for my mother to realize this, but after a few phone calls, we now have an Rx for both the IR and the ER. I believe that the instructions are to take 1 pill of the IR and 1 pill of the ER at the same time, 3 times a day. Does that sound correct?

That is where we are. At lunch this afternoon my mom wrote out some checks by herself (to pay bills) so she obviously felt up to doing that. I typically handle this for her when I come home on weekends. As I mentioned earlier in the thread, I noticed the small improvements such as the incresae in personality, strengthened voice, etc. I am really hoping that when she starts to take the IR and ER that the mobility in the legs will start to come back.

Does anyone else have any experience or comments regarding increase in mobility after the combination of IR and ER?

Thanks for all the continued support.

Matt

Hello All,

I just got off the phone with my mother and decided to post an update.

As I mentioned in the previous post, the medications that she is supposed to be on were finally "figured out" as of last Saturday morning, meaning that she had the correct medication in her posession as of last Saturday morning.

Since last Sunday morning, she has been taking three (3) doses per day. Each dose consists of one (1) of the IR Sinemet 25/100 and one (1) of the CR ??/???. I spoke to her twice on the phone this week; just a few minutes ago, and on Wednesday evening. Both times she did not seem very social, and her voice sounds extremely weak, much weaker than it sounded when she was taking only the Sinement 25/100. Also remember that during the medication "mistake" she had been taking only the CR three (3) times per day (or so I believe).

I have not physically seen her since last Sunday, but I am wondering if she is taking too much medication and it is having the opposite affect as it is supposed to. Again, I am only judging this based on the weak sound in her voice, and unfortunately I have not seen her since last Sunday.

Is it possible that she should have slowly migrated to the three (3) doses of both medications per day, as opposed to jumping right into the three (3) does of both medications per day?

Thanks,

Matthew

Is it possible that she should have slowly migrated to the three (3) doses of both medications per day, as opposed to jumping right into the three (3) does of both medications per day?

My guess is either she has gone too fast onto the greater dose, which could possibly mean she is overmedicated, or perhaps overwhelmed by the sudden increase in dosage, OR, that if the actual medication is different, which is not clear from your post, as in it is branded differently, or a change from generic to branded or vice versa, then this could change things, due to differences in the way tablets are formulated, making dopa more or less available. She could also, with increase in meds, be experiencing excessive sleepiness which might make her sound different. If possible ask for advice on this from her neuro, balancing meds is always a trial and error thing, and a sudden doubling of daily dose may just be more dopa than she needs.

Good luck with helping you mother sort this out, it seems she is responsive to meds and over time you may see more improvement.

Lindy

Lindy

Hi Lindy,

Thanks for the reply, and I apologize for the confusion in the medication. I have been reading so many other posts and people mention the medication "Sinemet" that I simply assumed that my mother was using it also.

To clarify, I just read and wrote down the names and dosages of the medications my mother is currently on:

1. Carbidopa / Levodopa 25/100 (which is a substitution for Sinement 25/100)

2. Carbidopa / Levodopa ER 25-100 (which is a substitution for Sinemet CR 25/100)

She takes one each of the above, three times daily :: breakfast, lunch, dinner. So, a total of 6 pills per day.

I read the above directly from the bottles.

With this in mind, I have a few questions:

1. Is there a true difference between the Sinemet and the Carbidopa / Levodopa, as I interpret from your post that there may be?

2. Is it safe to assume that ER = Extended Release and CR = Controlled Release, and that Extended Release means the exact same thing as Controlled Release?

3. Is it safe to assume that "25/100" is the exact same thing as "25-100", the only difference being the "forward slash" versus the "dash" between the "25" and the "100"?

4. When I read other posts and see the term "l-dopa", is it safe to assume that "l-dopa" is the same thing as "Levodopa"?

After being with her this weekend, I still honestly feel that she was doing better and showing more improvements while she was on ONLY number one (1) listed above in the medications. Her voice has gone back to sounding as weak as it did before she started any PD medication. The personality in her face and general being has, in my opinion, decreased since she has been on BOTH number one (1) and number two (2) above. She has been taking both number one (1) and number two (2) above for seven (7) full days as of today.

Might I be jumping the gun in forming conclusions that my gut instinct tells me that she is on too much medication at this point in time?

Is it frowned upon to experiment and stop taking number two (2) above to see what happens, or should this only be done at the recommendation of the neuro? Is it considered acceptable to call the neuro and ask my previous question as opposed to continuing the take both medications and wait until the next neuro appointment, which is the first or second week of April?

Thanks,

Matthew

Discuss this with the neuro.......
 

Hi, haver added info into your text.........

Happy Easter to all.

Lindy, thank you for the last reply. I just realized that I never got around to replying to you.

Since I am home this weekend I figured I would post an update.

My mother is still taking the IR and the CR, three times per day. My feelings are still the same regarding her present state, as I mentioned in my previous post. I feel she lost some of the gains that she realized while taking the IR and the IR only. I was talking to her yesterday, and she asked me if I thought her voice sounded funny. I told her that I felt she was making much larger strides while on the IR only. She responded by telling me that when she was on the IR for the first week, she felt much better than she had, prior to taking any medication. Then she said the next week she felt a little worse, then by the third week she said she felt no benefit. She describes her experience while taking the IR and the CR as being the same. She felt some initial relief, but now it is gone.

Our neighbors came over last Saturday to chat for a bit. They had not seen my mother since around Christmas time. They said that they noticed a remarkable improvement in her physical appearence, the strength of her voice, and her ability to construct sentences and participate in general conversation. They mentioned that around Christmas time, they felt that my mother really had to "think" before making a statement, and that sometimes she struggled to find the words to say. I had also noticed this at one point in time, and now that I am bit more educated on Parkinson's, the idea of thinking a bit more slowly closely relates to the brain attempting to send messages to the legs and arms, but the messages being delayed in their arrival.

Lindy, you touched upon my question regarding the possibility of being over-medicated your previous response. Our next neuro appointment is the 26th of April. Does anyone have any specific experience with being on too much l-dopa at one time? If so, were the symptoms such that there was really no relief from the PD symptoms? They always say that too much of "anything"is not good, and I wondering if that statement holds true for PD patients and their l-dopa.

Thanks,

Matt

Hi Matt,
Happy Easter to you and to your mom.
To answer your questions about too much and too little l-dopa - this is the theory as I understand it, if you take too little you are under medicated and the symptoms don't go away, if you take too much you could get symptoms very like PD emerge, and if you get it just right it should help....... it a goldilocks thing! However it isn't totally straightforward as depending on progression and duration of PD it can help more or less........ so the only thing to go on is if there is improvement, rather than the opposite. This may not all be apparent to the person with PD, for instance, they may always have thought they were smiling, and not realized that the smile was not visible to others, or they may have thought their voice was loud enough because it felt like enough effort was going into the talking......

If your mom is feeling and functioning better then is is probably visible, and your neuro, who won't have seen her for a while, is likely to be able to see that change. Good luck with the appointment,

Lindy

Hi Lindy,

Happy Easter to you as well, and thank you for the reply.

I consider myself to be a very observant person, and I do feel that since she has been on the IR and ER combination, that she appears to be in almost the same condition that she was before we saw a neuro and before she started medication.

However, there are some days that are better than others, as I am sure all PD patients have. Yesterday and today her voice was very weak. Sometimes it always sounds as if she has a scratchy thought, almost as if when you are sick and are troubled with that "tickle" feeling in the throat. However, I must say that in the past few weeks she has been attempting physical acts that she typically would not have attempted prior to starting medication. For example, this morning she and I made a green bean casserole to have for Easter lunch. This required that some large, fairly heavy cans of mushroom soup be placed underneath a can opener, and obviously required the can opener to open the cans. She was able to do this herself; the only thing she required assistance with was removing the can from the can opener after it had been opened.

She has also made comments that she can "feel" when, for example, a morning dosage of medication is wearing off around lunch time. To me, this must mean that she is feeling some type of relief while on the medication.

As her son, I simply really want to see her back to the way she was on the first week of the IR medication. Such a stronger, more emotional voice and facial expression, and overall a much more positive attitude. My father told me she had a really bad day this week which was sparked by an article she read in the local paper about Parkinson's. She made the comment to my father that she is "doomed". I just looked at the electronic copy of the article via the Internet, and it simply mentioned some of the progressive symptoms that patients may realize. She is already aware of the potential symptoms because I have printed many articles and Wikipedia information for her. Perhaps she was simply feeling a bit depressed this week, and the article was simply "pouring salt in the wound".

I will be taking the 26th of April off from work to attend the neuro appointment to express my concerns and observations since she has been on the IR and ER forms of the medication. She has been on medication for around 2 full months now, and I realize that this takes time.

One other concern of mine is some of the things I have been hearing about the long term affects of taking levodopa. Some argue that the levodopa is actually what may cause the disease to be progressive, and that it can show immediate relief of some PD symptoms, but in the long run it may actually be starving the brain of dopamine itself.

Thanks,

Matt

A few more things...
 

Matt,

First, there is absolutely no evidence that levodopa causes disease acceleration. This was the thought at some and neurologists once withheld levodopa therapy as long as possible, thought we all eventually end up taking it. A fairly good overview of the levodopa question is found here; it has in fact instead shown to have neuroprotective properties. There is a fairly recent study you may want to look up for more info; it is ELLDOPA- this has some contradictory results on the protective front, but I think both should serve to support that at the very least it does not seem to accelerate the disease process. Many people take it for decades, so I don't think that would be the case otherwise.

That's not to say Levoodopa does not prevent us with other issues especially when we have to take a lot of it.

CR has a lower rate of bioavailability (70% vs. 99%) than the IR, so it come with its own distinct set of issues (I know these to be true from experience):

- It can result in too much accumulation in the bloodstream later in the day resulting in more dyskinesia.

-It is more reliant on food being present to aid absorption, and the IR is more reliant on a more empty stomach- you can see the issue here.

-Older patients may experience mental confusion and hallucination more readily on the CR formulation.

Is your mom still taking 1 full 25/100 Sinemet IR plus 1 25/100 Sinemet CR for all her doses? Usually, the goal of the CR is to give more time and less IR pills. That means ideally with CR one has 4-6 hours between doses and we use Sinemet IR only when the CR won't kick in.

I am wondering if your mom isn't experiencing times when she is undermedicated due to the difficulty it takes in achieving a balance between the two meds. It also sounds to me from the description of your mom being both stronger physically yet with a weak voice or slowness in speaking that she may be "in between" where her meds are working at like 75% and she's not entirely her normal self - this happens sometimes with the CR; there is also a "skipped dose effect" that can occur where it would appear we did not take our meds at all, and is frustrating. Or she may also be experiencing a little confusion from the CR which may be the "weakness" you hear.

I would ask the neuro her goal in prescribing both? Does she want your mom to take them both together or eventually take less of the IR? Also, she might be able to conduct a little exam to check for confusion if that at all may be an issue. This like I mentioned would be CR related.

Many of us do experience depression and end up going on a med for that as well. Also keep in mind that she has been fairly recently diagnosed and we go a wide range of emotions - it has been likened to going through the stages of grief that Kubler-Ross had identified.

Ask lots of questions; your mom and your family deserve to know exactly what the neuro's goals are with the meds. There are other meds out there if things continue in this vein.

Laura

Laura,

Thank you very much for the quick response. I wanted to let everyone that contributes to this thread know that I speak very highly of you all due to the continued support that you provide, among other things.

Thank you for the links to the levodopa information. I will read them shortly.

To answer your specific questions, yes, the dosages and medications that you listed above are what my mother is taking. She takes 2 pills at the same time, 3 times per day. One of the pills is the Sinemet 25/100 IR, and the second pill is the Sinemet 25/100 CR. Based on my understanding of the typical goal of CR, I am starting to convince myself more and more that my mother is overmedicated, or, perhaps the doctor's instructions for what to take and when to take it were misunderstood. I think I am going to ask my mother to call her doctor prior to the visit on the 26th to confirm that she is taking the dosages correctly.

Might I ask this question, and perhaps it is difficult to answer. Supposed that after the 26th the doctor recommends switching to only CR, using the IR meds only when needed. What is the liklihood that this adaption and change is going to take quite some time to be adjusted to? I understand from previous posts that this is really a trial and error process, but I am trying to prepare both myself and my mother for any delays that may be realized if the medication and/or frequency is changed.

Regarding the depression, she has been on a mild anxiety pill for quite some time. She started taking it after her 1st spinal fusion surgery in April of 2009.

Again, this is great information and will go into my journal and also will add to my list of questions that I am preparing for the 26th.

Thanks,

Matt

Hello All,

We had our third neuro appointment this morning so I figured I would write with an update while everything is still fresh in my head.

After today's appointment, my mother will be taking the following

Morning:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

Afternoon:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR

Evening:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

As you may notice, the only thing that has changed has been the addition of the 2 mg of Requip XL, administered twice daily.

We had the folllowing points of discussion with the neuro.

First, I expressed my concern that my mother is not the same now that she has been on the IR and the CR, and that I felt there was much more benfit when she was taking IR only. The doctor disagreed with me and feels that she sees drastic improvement in my mother compared to both the first and second times that she has seen my mother. I asked why she seemd to show great benefit from the IR, but not as much benefit (in my opinion) from being on the IR and CR at the same time. The doctor said this was because prior to seeing a neuro, my mother had a dopamine starved brain, and the IR was like a happy pill. After that initial "high" went away, it appeared to us as if she was not doing as well, when in reality she is. After the doctor explained this, I saw her point.

We continued to discuss that my mother's mobility has become more "fluid" than it was prior to starting meds. She does move around a bit quicker, takes on more physical activities such as minor cooking, writing checks to pay bills, etc. The majority of the aforementioned items my mother could not do prior to taking meds.

My mother's physical therapists have commented that she is standing up more straight and continues to show improvement when attending physical therapy.

I asked the doctor to answer why she has my mother on IR and CR at the same time. Her answer was that she is trying to avoid the "nulls" typically realized when taking IR or CR, but not both at the same time. She also mentioned that she does not want too much dopa to be in my mother's system, which I did not understand because techincally my mother takes 600 (mg?) of levodopa a day based on her current prescriptions. The doctor also explained her concern that physicians try to strike a balance in a patient between relief from symptoms and acceptance of certain side effects that can be caused from the dopa.

I asked about the differences between Sinemet and generics. The doctor explained everything that I have learned from this forum thus far, and wants us to pay attention to the fine print on the bottles of the generics to make sure they remain the same throughout all the refills.

I asked about my mother's toe curling and leg swelling. We were told that the toe curling is a side effect of the medication, but I mentioned that her toes curled even before taking medication. The doctor said knowing that the toes curled prior to medication was a key point because it may allow my mother, if required, but not now, to have more dopa in her system because the toe curling may not be being caused my the dopa, but the disease in general. I asked about botox shots being an option for the toe curling, and the doctor said yes they are an option, but that she does not administer them.

I asked if there were any other vitamins and minerals that my mother could be taking that may help with the PD. The doctor said that the general vitamins and minerals my mother currently takes are good enough for now.

The doctor was happy to hear that my mother is no longer taking medication for her incontienence nor her pain medication, although my mother still struggles with incontinence.

We were given, on the spot, 42 pills of the 2-mg Requip XL. The doctor described the Requip as a "helper pill" or "cousin pill" of the carbidopa / levodopa. She said that the Requip XL is supposed to extend the half life or the duration that the dopa does its job.

The doctor said we must pay attention to any odd behaviour that may surface after my mother starts taking the Requip XL, because it is a known side effect.

If the Requip XL seems to help, we need to call the doctor because the 42 pill supply she had laying around the office will only provide for about 20 days of medication. If it continues to work, she said she would write us an Rx for more.

We asked about purchasing a stair-climbing system for my mother, even though my mother refuses to use one at this point in time because she wants to get to a point where she can make the steps without any assistance. The doctor mentioned that if we desire, she can write an Rx for such a system?

Our next appointment is scheduled for the 9th of July.

Overall I was pleased with the appointment. She again spent a lot of time with us and answered all of my questions. I challenged her on my mother's progress and she firmly disagreed with me, and gave her medical explanation. The point she brought up, which I agree with, is that my father and brother see my mother everyday. I see my mother every weekend. The doctor only sees her once every month. The doctor said she sees great improvement in my mother compared to the day we set initial foot in her office back in February. As I mentioned earlier, the doctor said that as family members, our expectations were set by the initial symtpom relief of the IR and IR only medication which was a false expectation based on the fact that my mother's brain experienced a high from the IR.

That's about all for now. Any comments or questions are welcomed.

Thanks for your continued support,

Matthew

Hey,

Just wanted to say that it sounds as your mother has a good, caring doctor...one who listens!

I take CR and IR; I do understand for not wanting your mom to experience the "nulls", and it seems that she ip i treatment approach. I do not take mine together ...I tend to use the IR in between to keep my "nulls" at bay.

Best to you and check in from time to time!

Laura

Hi Laura,

Thanks for the reply.

I spoke to my mother this afternoon and she said that the Requip XL makes her very sleepy. After performing some reading, this seems to be a very common side effect of the Requip XL. I said to her that I would guess that she probably does not realize any "extended relief" from taking the Requip XL if she is feeling sleepy after taking the medicine, and she agreed.

She said she is going to continue to take the medicine until the 20-day supply or so is expired. I do not know if the sleepiness will eventually go away. I suppose we will have to contact the doctor via telephone and inform her fairly shortly if the medicine does not help.

Just an update.

Thanks,

Matt

Hello All,

It has been quite a bit since I made a post so I figured now is a good time.

First, I was mistaken when I listed the medication and frequency she is taking them. Below is a correct version:

Morning:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levpdopa 25/100 CR
1 - Requip XL, 2 mg

Lunchish:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levodopa 25/100 CR

Dinnerish:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levodopa 25/100 CR

Bed:

1 - Carbidopa / Levodopa 25/100 CR
1 - Requip XL 2 mg

The Requip XL is still making her feel tired and lethargic. However, I have noticed that when she has her "on" days, she is really "on". For example, she is strarting to show interest in going places that she never wanted to go to before. She is starting to go out to eat with us to diners are such, last weekend we went to a Border's book store so she could buy some books, and yesterday we went to lunch and then to a Yankee Candle store. She is able to get herself in and out of the passenger seat of our GMC Terrain, albeit slowly.

For mother's day I bought her an HP Mini Netbook laptop. I bought this for her so she could have something to do during the day besides read her books and go to physical therapy. She loves it. She is slowly re-learning how to use the Internet and check her email, but I can tell that she truly enjoys it.

Her doctor emphasized that she needs to continue to do the physical therapy 2 days a week, but during the days she is not at therapy, she needs to remain active. I think these instructions from the doctor were the fuel to the fire that is driving the fact that she is showing interest in going places, which is great.

Based on her current medications and frequency, she is ingesting around 700 mg of l-dopa a day. If you guys would not mind sharing, is this number less than what you take, more than what you take, the same as what you take? During your trials and tribulations with medications, how did your bodies react to certain mg dosages of the l-dopa? The doctor expressed her concern where she tries to keep certain patients under a certain mg of the l-dopa due to the side affects, which is one reason why she did not increase my mom's l-dopa after this last appointment, and instead gave her the 2 mg of Requip XL to try to evenly distribute the l-dopa throughout a 24-hour time period.

My mom's primary side affects of the current dosage of l-dopa is muscle aches, and it appears as if her legs swell quite a bit. Her feet have grown in size and we had to order some new shoes that were 1/2 size larger in length and 1 size wider in width.

Any thoughts?

Thanks for the continued support.

Matt

Hello All,

I wanted to provide an update.

After my mother extinguished her 40 day trial of the requip XL, the doctor wrote an Rx for a new dosage of the requip XL, only to have the health insurance company refuse to pay for the medication. So, instead of getting requip XL, we got the generic form, which is called ropinirole.

The ropinirole had the same affect on my mother, that being it made her feel very tired and lethagic. Most recently, she broke out with a bad rash on her neck and her legs. My mother contacted the dr's office and was told to stop the ropinirole and an appointment was expedited for my mother which is this Tuesday the 15th of June. Her next appointment was supposed to be in July, but I suggested that she not wait that long if her medication combination is not working!

Today we cooked lunch (spaghetti and meatballs) and I noticed that she is getting around the kitchen without her walker by grabbing onto the edges of the kitchen cabinetry and table tops. This is a good thing. I think that she 'seems' much better since she stopped the ropinirole because she does not seem as lethargic and 'out of it'.

I am hoping that the doctor will have same answers on Tuesday. If you recall, at the last appointment we were told to try the requip xl and keep the ldopa amount the "same" in hopes that the requip xl would prolong and extend the amount of time the ldopa was in the system. The doctor's preferred not to increase the ldopa right away.

Any comments or thoughts are appreciated.

Thanks,

Matt

Hello All,

I spoke to my mother yesterday evening after her Dr. appointment. The doctor has given her an equivalent of +150mg more of IR ldopa per day. I forget how many pills this equates to, but I believe that the addition 150 mg will be administered in "half pills".

I believe this logic was deduced based on my mother's input that she feels as if her meds do not really kick in until her afternoon dosage.

I will post a new message after a few days and we see how she is doing. I have noticed that she is much more talkative and conversational now that she is OFF of the Requip XL.

Thanks,

Matt

Hi Matt,
Just to say that it is not uncommon for medications to be kicking in better after the second dose of the day, or just later in the day, probably something to do with the gap between last dose and morning. Or even just sleep itself.
Catching up on the nightime dip. Also sometimes the slow release forms are not so bioavailable to the brain, less is absorbed. An across the board increase could turn out to be too much, but giving you this for information only, if it is it will show up in some way, you are probably learning that this thing of dosing is trial and error anyway.

Lindy

Hello All,

It has been awhile since I have written so I figured I would provide an update. Yesterday afternoon we took a trip down to the University of Pennsylvania's Parkinson's Disease and Movement Disorders Specialist facility. It had come recommended to me by a family friend. We were to the point where we were not thoroughly satisfied with our local neuro's effort, in conjunction with the fact that we had heard many positive things about the University of Pennsylvania.

We were seen by "doctor #1" who started off by asking my mother what brought us down there yesterday afternoon. My mother described why we decided to come down, and the doctor began looking at my mother's current prescriptions, dosages, frequencies, etc. The doctor was asking a ton of questions and typing on her computer at the same time. I noticed that a lot of the questions seemed to be tailored towards determining if the medication was the correct medication, and what times of day it was or was not working. After asking a ton of questions, the doctor performed an extremely thorough physical exam on my mother, asking her to do things even I would struggle doing at 27 years old. After performing the physical, she grilled my mother with some additional questions. After that, she said she would return shortly after reviewing my mother's MRI of her head and neck from months ago. She returned, and she returned with a second doctor. The second doctor ("doctor #2") asked my mother more questions, and the majority of them seemed to be repetitive and redundant based on the first doctor's set of questions, but I had a feeling this was by design. The second doctor then performed a second physical on my mother, and continued to ask questions.

The results are as follows:

1. The doctors are not convinced my mother has PD
2. The doctors said they do not like to prescribe the CR form of ldopa because of its inconsistency and variability of absorption into the body
3. The doctors removed my mother's present dosage of CR and replaced it will a higher dosage of CR to be taken only in the evening.
4. The doctors are continuing my mother on the IR form of ldopa, same strength, but are changing the times of day and amount she is taking

They printed a medicine schedule for my mother to follow for the next 4 weeks. The frequency and dosage of the medication actually changes from week 1 to 2 to 3 to 4. After 4 weeks my mother is to return and report the results. The purpose of the exercise is to see if the CR is not doing her any good and to see if the would benefit more from taking more IR. The second purpose of the exercise is to see if she does not respond to the IR, then she may have atypical Parkinson's and hence why the ldopa is not working in her treatment.

The doctors also recommended that my mother participate in some type of speech therapy. It turns out that the first floor of this building has a physical and speech therapy department. On the 14th of December my mother has a 9:00 AM appointment with the doctor, then at 10:30, 11:30, and 1:30, she has physical and speech therapy on the first floor of the building, just to try it out and see how it goes.

I have been reading about the differences between atypical PS versus PD and what I have been reading does not seem pleasant. It seems as if atypical PS is harder to diagnose than PD because of the patients' lack of response to ldopa therapy.

That is where we stand now. I am hoping that the manipulations in medication end up working for the better, but I was curious to know everyone's thoughts and if you have any experience with atypical PS?

Best Regards.

Matthew R. Smith

Matt -
I have just read your posts with much interest and thought how lucky your mother is to have you pulling for her. It sounds as though she will be getting valuable new perspectives on her illness and what can be done; I think trying a new neuro was a very good idea. I know this must be extremely hard on you and all family members - hang in there. You seem to have very good ideas and keen observations and your mother needs both as doctors just do inadvertently miss things ( as do we all).

My best to your whole family.

Sasha

Hello Sasha,

Thank you for taking interest in my thread and our situation. It sure means a lot to me. I am hoping now that we are seeing a specialist that we will be exposed to and receive extra care that simply is not possible at our local level.

As soon as I have more information I will be sure to report it to the forum.

Best Regards,

Matthew R. Smith