Matthew,

Happy New Year!

Thanks for that last update on your mother's condition; it does indeed seem she seems to gain some benefit from the Sinemet...what this means, who knows? Common sense would tell us we need better, more scientifically accurate diagnostic tools beyond clinical observation and response to medicine. I believe DAT brain scans (more sophisticated than MRI) are prevalent there in diagnosis, not here. The machines are still slogging through FDA hoops and insurance companies do not want to pay for the pricy tests. Isn't it ludicrous though your mother could still have the scan, not to find out what she has, but what she does not have. This could alleviate a lot of worry on the part of everyone. You do usually have the option to pay out of pocket, but who has that kind of money and point is that insurers should be covering it; especially in cases not so obviously screaming "PD".

Have you had a chance to follow up with that doctor who was going to review the MRI results?

Beyond this, what does the MDS recommend for further diagnostics? Keep asking "If not PD, then what else might it be?" My GP recommended using that exact wording with specialists, maybe because it doesn't let them so easily off the hook.

In the end, maybe this is all there is to it. It would seem that PD cardinal symptoms seem to emerge in some people as a reaction to some sort of brain trauma or systemic stress. We can't even get everyday, run of the mill stats on PD let alone probable etiologies; the CDC has never collected demographics on us. It does still happen in connection with viral infection to varying degrees...in some people the symptoms clear when infection clears up, while in others it becomes degenerative disease. In these cases, people involved had a range of responsiveness to levodopa. I don't think there have been case studies linking Parkinsonism to anesthesiology, but you never know. Have you tried a search for those terms in Pub Med. This may seem far fetched but stranger things have happened and given no one gives us any thing else plausible...

Not sure how I would proceed if I were in your shoes. It is so frustrating to be put on a diagnostic hold shelf; a lot of times when diagnosis is uncertain the neuro will place you there and then monitor symptomatic changes if any. This is why it is great that you have been absorbing and recording from day one; just keep up the good work.

If you want to, in theory say, operate from premise that your mom still may have regular ol' PD then time is an issue. The only real natural take no meds approach one can take is to either keep exercising or to start moving. It is the only thing out there that shows ability to halt disease progression and spur generation of new neurons. I know it may sound crazy given that she has become barely ambulatory, but it may be something you want to discuss with her physical therapist. I think Wii's are now being studied in clinical trials as therapeutic in PD, so maybe you can make a family game of it?

Best,

Laura

Hi Laura,

Thanks for the reply. Well, the hits just keep on coming. Yesterday my mother had another bad case of the diarrhea. She literally spent almost all of her waking hours in the bathroom. I told her to stop taking her ldopa until the bowel problems went away. As of noon yesterday, she has not taken any ldopa. When she was finally able to talk last night, I asked her to eat some saltines to try to dry her up. She also sipped on some water. At 3:15 AM this morning I received a call from my father informing me that my mother had fallen and he was not able to get her up. I raced down to the house and was able to get her up. She had a "freeze" in the hallway, and could not move for 45 minutes. When she finally moved, she fell. Her breathing was all over the place and she could barely talk. We finally got her into bed. I stayed at their house last night. Around 11:00 AM this morning she froze again. She was completely dehrdrated and could not move. It took her over 30 minutes to travel 10 steps. We took her to the Emergency Room. They have her on morphine for her stiffness and some pain she has from the fall, and they are giving her some nutrients via an IV. My father is still at the hospital with her.

Just an update.

Matthew R. Smith

Hi Matthew,

If you happen to check this...your mom shouldn't have stopped taking the levodopa abruptly. There is a serious rebound effect that takes place when a person suddenly stops taking their anti-Parkinsonian meds; it can become more serious especially if she goes rigid and develops a fever - it's called Neuromallgnant Syndrome. Please makes sure her attending doctor and all neuros treating her know that she abruptly stopped all meds. Don't mean to scare you...I had it happen to me during my pregnancy. It causes a sudden acceleration in symptoms and their severity. Note that it should not cause permanent state of and that this, I think, means pretty clearly that your mom does have PD.

Please let me know how you are all doing!

Laura

Hi Laura,

Thanks for the reply, and thanks for the information. I made sure to tell every nurse and doctor that we came across today that she is a Parkinson's patient, and I made sure to print a copy of her most recent medication list and dosages before we went to the ER. The nurses and doctors made photo copies of the medication lists, twice, and they are aware that she stopped taking all PD meds as of 12:00 PM yesterday, the 30th of December.

Based on the issue that occurred in the past 24 hours, what in particular do you think signifies that she may indeed have PD? The fact that she stopped at noon yesterday and had the freezing episodes last night / this morning? There are a few variables involved here that I should have mentioned earlier. She is taking .50 mg of klonopin in the evenings which she did take last night. The klonopin is supposed to "loosen up her muscles" so that when she wakes she does not feel as rigid. It has the potential to make someone feel a bit "loopy". So, if she took her klonopin last night around 9:30, was extremely dehydrated from her bowel issues all day, I was thinking that perhaps her body was simply overwhelmed and extremely weak and those may have been the reasons for the freezing.

My father just contated me and informed me that they are admitting her to the hospital for the evening so she should be in good care until at least tomorrow, which is actually a sigh of relief to me right now.

Thanks again for the reply. I will keep you in the loop!

Matthew R. Smith

Yes, I am glad she is in good care; at the hospital they will be able to keep her comfortable.

Perhaps, the reaction known as NMS usually occurs in people who take dopamine related drugs and suddenly cease them; it also occurs in PWP. Your mom's reaction, sounds similar to what many of us here have experienced, it is a rebound reaction. We end up looking much worse than we really are. Freezing for me was a central part, and it is not anything that I had experienced before. Mine was even more severe; my body was in lock down the entire night, I couldn't even roll over to pull up a blanket. I was on my back like a turtle, not to mention...I was pregnant with an overactive bladder...not fun.

As for why I think it is Parkinson's: I don't think her body would respond this way to levodopa if she did not need it. This type of reaction is well-documented in the PD patient community; doctors will acknowledge it , but it is not like there is any research conducted and published. I lived it and had it confirmed by my doctor; I had deteriorated so rapidly that I was concerned I wouldn't make it full term without being wheel-chair bound. I think this pretty much even confirmed for my doctors that I had PD (I had been treated for something else entirely for years before this.

Also, some of us do experience freezing and usually it is a fleeting thing. However, when we feel stressed, anxious, or ill, they can turn into "blocks" lasting far too long and even then levodopa sometimes won't help.

Just speaking from experience. Your mom could be different thing; it will be interesting to see if the MDS looks again at the PD "undiagnosis".

Best,

Laura

Hey Laura,

Happy New Year! I just called down to our MDS and left a message with their answering service detailing the events that happened over the last few days. I am currently waiting for an on-call doctor to return my call. As more information becomes available, I will be sure to post.

Thanks,

Matthew R. Smith

Hi Laura,

I received a return phone call from a neuro down at U Penn. I explained the situation and the neuro said that my mother needs to go back on the ldopa that she was on immediately. She gave me her name in the event that the nurses or doctors would like to speak with her. Thanks again for the information.

Matthew R. Smith

Matthew,

That's really what I wanted to say or was trying to convey last night, but since I am nowhere near being a doctor.... Had she shown more serious signs of the Neuro Malignant Syndrome like rigidity and fever, I would have been a little more obnoxious about it Anyway, thank you for bothering her doctors on a holiday...

Essentially, I went through the same thing but over the course of a few weeks rather than days. You should notice more of an improvement when she gets levodopa back in her system; mainly because decline was so prominent.

Keep us posted!

Laura

Laura,

To my pleasant surprise, a doctor at the hospital caught this! When I went to see my mom today she told me she had been given ldopa by the nurses as soon as she was admitted. She looks a hell of a lot better, definitely hydrated, very talkative, etc. She is quite stiff from being in a medical bed all day and night. They are keeping her over night. All of the nurses and doctors also commented on the fact that the lymphedema therapy she starrts next week should help with her mobility.

I will be at this same hospital next Tuesday with my father. He had a stress test performed which implied he may have a major blockage in an artery. He will be getting a cardiac cath to have a better look.

Matthew R. Smith

Hello All,

I wanted to provide an update.

First, my father recently had two stents inserted into one of his arteries. His cardiac cath revealed that he had a 95% blockage. Sigh.

On January 2nd we brought my mom home from the hospital. Her diarrhea had subsided. Literally the moment that the nurse came in the room to tell us that she was being discharged, the diarrhea started up again. I stressed the fact that I wanted her to stay in the hospital until the doctors had a chance to talk to our MDS. My parents insisted that my mother come home because she started her lymphedema therapy the upcoming week. We brought her home, and her diarrhea persisted for a few days.

She has had about 2.5 weeks of the lymphedema therapy thus far. She has tailored her ldopa down to 1.5 pills, 4 times per day, all pills being IR 25/100. The diarrhea had gone away for the most part, until today. I called home around 5:00 PM to see how her therapy went today. My father answered and mentioned they did not go because she has had the diarrhea all day. My father left to go grab a bite to eat around 2:30 PM, came home at 5:00, and she was still in the bathroom.

Can a total of 6 pills daily really cause this issue or are we looking at something more deep-rooted?

Matthew R. Smith