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Topic Lower Body Parkinsonism Go to previous topic Go to next topic Go to higher level

By sharons On 2010.03.28 23:49
I just found this forum and have so many questions. My mom is 80 and was diagnosed about 4 years ago with idopathic parkinsonism at the Cleveland Clinic. Then about a year later, she was seen by a different neurologist who said he feels she has lower body parkinsonism. She has never had tremors and does not respond to any of the commonly used parkinson medications. Her symptoms are shuffling, freezing, constipation, incontinence, frequent bladder infections, trouble chewing, severe weakness and trouble expressing herself verbally. She gets very upset if she needs to make a decision or explain something to someone and sometimes will start crying. She thinks her trouble chewing is due to wearing dentures for 40+ years and her jaws and gums wearing away, but I am wondering if it is more a symptom of pd. She has to have most of her food pureed and over the last year or so has gone from 205 lbs to 167.

I have read a lot of things on websites about pd, but I am really not sure what to expect or how to tell what stage of the disease she is in. She keeps expecting to find something that is going to get rid of one symptom or another, but if they are all just symptoms of the disease, I'm not sure anything can be done. She doesn't see a neurologist anymore since none of the medication seemed to do anything. She sees a urologist due to the bladder infections, but other than that, she only sees her regular md about every 3 months. Is this normal, or should she still be seeing a specialist for the pd? Any answers anyone can give me, I would really appreciate. I have never known anyone with pd, and really don't feel like I have anyone to talk to about all of this.

By karolinakitty On 2010.03.29 09:22
Hi Sharons and welcome to the forum.......
I guess the first thing i would ask is what meds has she tried that do not respond. If it's simemet or lev/card drugs then it may be she has one of the PD plus diseases. There are several of those diseases that where patients don't respond to the meds. Mine has been daignosed with LBD and it is one of those plus issues.
He takes requipXL, aricept and amantadine (for freezing)
With the chewing.... is she having trouble chewing or swallowing? If it's swallowing have them so a swallow test next doc visit.
As far as stages... it's a muddy water issue in my opinion. When you look at the description of the stages, mine could be somewhere between 3 and 4. However, he was only diagnosed a little over a year ago and is only 53. He just has a lot of the symptoms ( not severe tremors though) and he had a rapid progression last year that took him downward. WE don't feel however that he is really that far along. With this forum you will find that everybody is different and the symptoms and stages are all different. I would use the stages only as guidline not as "gospel" truth.
We recently went to a Movement Disorder clinic and found them to really know more about the PD issues then the regular neurologist. I'm not saying he didn't know what he was doing but just that they (MDC)see it everyday and specialize in PD. From what i have read most MDC's are run by learning hopsitals and you get that extra attention from an intern who is really interested and excited about this specialization. At our clinic we are to have 6 month check-ups, but they insisted we use a PCP or regular neuro for in-between questions and needs.
Going back to the weight loss.... mine lost over 60lbs in 6 months .... the meds made him really sick and he couldn't eat anything but sweets. He at least got some caloric intake with them. He has leveled off because we found the proteins in foods was the culprit and worked around that issue and now with his XL he has almost no sickness at all. Its a time release and goes a little easier on the tummy.
I'm sure otheres will jump in with their thoughts. Hang in there with us and i'm sure you can learn more here then anywhere else. We have both caregivers and patients and coming here was the best thing i ever did. I have learned sooooo much.

By sharons On 2010.03.29 11:47
Thanks karolinakitty for your response. So far, her problem has been with chewing, although she did say something yesterday about swallowing air when she swallows. I'm not quite sure what she meant by that.

I am going to talk to her about the meds you spoke about. I know she was on mirapex, sinemet, and the other thing I believe was called levadopa. None of these meds did anything for her.

I did hear about a new gait and balance disorder facility that has opened near us recently, and after what you said, I think it would be a good idea for us to look into this.

Do you have any suggestions on her problem with weakness. My mom has always been a really negative person who worries about absolutely everything! Everyday when I talk to her and ask how she feels, she says she is terrible and just keeps getting weaker and weaker. She lives in an assisted living apartment and is currently having physical therapy for an issue involving back pain. She did a week-long stay at a phycial therapy facility a few months ago, and did really well. But once she was back in her apartment, she went right back to how she was before the therapy.

By LOHENGR1N On 2010.03.29 16:07
sharons, Hi and welcome to the forum. Movement disorder specialists are just that, Neurologists who limit their practice to movement disorders (so they are more up on treatment and diagnosing these disorders). I think it would be prudent to pursue the movement disorder course if you can, at least until you get a diagnosis nailed down. The gait and balance clinic sounds worth looking into.

Your Mom's weakness, I'd say to ask some questions about the weakness. She might be having some trouble explaining what She means. Try to find out if what She's describing as weakness is really a failing of strength or if it is harder to start and do things? (this could be stiffness or freezing which could be related to P.D.) Does She feel the weakness as a jittery or shakiness inside? (this could be internal tremors associated with P.D.). You'll have to tread lightly with this questioning as you state your Mom gets upset with explaining, but you need to find out so you can relate to the Doctors what's going on. The weakness as an example; You say She has never had tremors, however She might be experiencing them internally which She can't explain but is another puzzle piece to Her disease. I hope this helps. Again welcome to the forum. We're all here to help and We understand. Take care, best of luck and hang in there!

By lurkingforacure On 2010.03.30 08:36
I'm probably going to get shot for saying this but my mom is 75 and has a LOT of the same things as your mom and she does NOT have PD, she is just old! She gets depressed easily too, worries about everything (farm mentality, I call it, always something to do), is weak, etc. etc. Our bodies get old and start to fall apart and just because they do does not mean we have some disease for which pills will be prescribed! And even if she does have PD-watch out for the side effects which often are worse than the disease symptoms...many of the PD meds, including levodopa, have side effects which are the disease symptoms themselves so you start taking them and the symptoms are magnified! The med thing is really hard to get right, we still aren't there and are four years into this.

I won't speak to diagnosis or medications but I will say this: get your mom into some activities she enjoys, that will get her looking forward to stuff. We did this with my dad's mom who lived to be 30 days shy of 100, she loved gardening but could not do much at that age, so we had a guy who came out several times a year to change out her garden beds: fall, chrysanthemums, winter, something else, spring, bulbs, you get the idea. There was always something "new" growing and/or blooming that she could look at out her windows, and it was cheap, lifted her spirits tremendously, and usually got her outside walking around to see things closer.

My mom is now at the same stage. She sits around thinking of all the things she needs and wants to do but cannot because she is weak, too tired, not feeling well, whatever. I think as we get older we think about what we USED to be able to do and compare it to what we can do NOW and it's just depressing. Nobody can still work in the yard all day vigorously when they are 75, then come inside at night and do the housework, then stay up half the night watching movies! I try to tell her what all she can still do, which is siginificant compared to many, and that helps, but I have to remind her often because her natural inclinication is negativity and she does tend to just stagnate within herself.

I recently committed to helping my mom make some decisions about repairs to her home which she has neglected for decades, and that is giving her something to look forward to (what color do I want the walls painted? what type of new faucet should I get (old one is 65 years old and shot)-things like this don't let her mind wallow and get her thinking about future things. I may regret taking this on since I have way too much on my plate already but I could see her slipping into a depression and getting weaker and what can you do?

Our neuro told us that he believed if we all lived long enough, we'd all get PD. I think he is right. Our bodies decline, some faster than others. We STILL do not know what "causes" PD, so when doctors dx it, they are really trying to eliminate other diseases. I also think most docs nowadays assume you have "something" when you come it-it is rare for me to hear someone went to a doc for this or that strange symptom and came out without a script for something.

You are wise to be here, it's a treasure trove of information. Do as much research as you can, and you will be best able to help your mom. Good luck, keep us posted.


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