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

I have had this neurodegenerative illness since my boy was in kindergarten,
I am soooooooo sorry your mom is in pain,
I never know what started this parkinsonism, but gdnf by amgen was a great
hope, but unkindly they removed the meds from the people w/ pd in clinical trials
does your mom go to a movement disorder specialist, who knows what to do for your mom's pain w/ back pain... my sciatic pain - hot knife horrid pain, is probably not near as much as your mom has to deal with, I was just given
gabapentin - for nerve pain/ also used as an old epilepsy anticonvulsant drug...
you both are in my prayers...dear one...


for more information - go read at the national parkinsons foundation online...
or try to spread the news info wanted-
helen mirren -had a great article
its time we all understood what PD is - blessings to you and your mom

Matt,

First, I want to say what has probably become obvious...you've touched a lot of us moms out here; especially those who have sons. Your dedication and desire to stay informed is really incredible and of course, that reflects back on your mom. I know all families love one another but rarely do I see it expressed this way. Kudos!

Anyway, all mushiness aside, it sounds like your MDS is on the right track. If she doesn't have PD, that dosage would not hurt her, so it is a relatively safe way to put a check mark in the "unlikely" PD column. Here is what I would do: look through your journal entries and prepare a table based on the different dosage levels of Sinemet; and create column headings for symptoms and check off each that responded to various levels of levodopa. Note: any things that seemed to worsen upon taking a dose. Take back to your doctor and ask if it could be something related to her surgery? She had spinal surgery, correct? Since her symptoms emerged after that I would start to question possible neurological consequences. We all have noted that PD can emerge after major surgery. However, most people with full blown PD show dramatic responses to levodopa.

Still all this tells you only what she DOESN'T likely have; it's a diagnosis or undiagnosis by exclusion. It happens with at least 30% of us, and that is a pretty high number. Now maybe is the time to push for a PET scan? These roughly measure dopamine levels in the brain but generally used in research; one is used routinely in Europe, while here we are expected to pay out of pocket. If you can argue that it will cost just as much to send your mom to four more doctors who still won't be able to tell her what is going on, then they may cover it or at least par of it. You'll be able to confidently eliminate PD, and move onto getting your mom a more accurate diagnosis and a treatment that works for your mom.

Laura

Matt,

I was re-reading your initial posts. Mainly interested in your mom's presenting symptoms. It struck me that it sounded like an atypical Parkinson's which have different pathologies and sometimes different treatments; this also know as lower limb parkinson's as it it effects mostly gait. There is no tremor, but masked facies and cognitive changes are noted. It is also known that the condition can be refractory to traditional PD meds. Here is a fact sheet:

http://www.parkinsons.org.uk/advice/...kinsonism.aspx

Did your mom have an MRI?

On second thought, I would insist on that PET or SPECT scan.

Hello All,

Thanks so much for the replies and the positive words. I know that my mother and my whole family appreciates the effort that I put towards this unfortunate situations, but to hear addition kudos from folks like yourself makes me feel very good inside.

Laura, to answer your questions:

1. Yes, she had two (2) spinal fusion surgeries, one in April of 2009 and the second in October of 2009. After the first in April of 2009, she was still able to make the steps by herself. After the second in October of 2009, everything went down hill.

2. Yes, I have expressed my concern to both neuros (the specialist most recently) that all of this happened AFTER her surgeries. Both neuros have explained that there are cases where the surgeries bring out the PD (or whatever our case ends up being) and that there is no explanation for why it does. I'm no doctor, but to be it HAS to have SOMETHING to do with the anesthesia and the stress and tramua the brain realizes during surgery. My mother has technically had a total of 5 surgeries that I am aware of, 4 of them being between 2007 and 2009.

3. I agree that the VP that you posted a link to matches my mothers symptoms and issues, almost identically. Yes, she had an MRI and both neuros (including the specialist) have looked at the MRI and never mentioned anything specific about what they saw

4. I am going to make a note that when my mother and father go back to the specialist in Philly in 2 weeks to inquire about the PET or SPECT scan. FYI - the specialist works at the University of Pennsylvania Parkinson's Disease and Movement Disorders Specialist group if I have not already mentioned in a previous thread.

I feel much better knowing that we are in the hands of a movement disorder specialist, but I am also saddened and frustrated that we are now most likely looking at an atypical diagnosis to which mediciation does not seem to be a treatment for relief of the symptoms.

Continued thanks to all,

Matthew R. Smith