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?

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?

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

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