Matthew,
The problem you mom has could be due to genuine diarrhea, either as a reaction to medication ,or as an ongoing gastric infection or similar, OR it could be related to constipation which is well known in people with PD. This can often result in leakage, and I would hope that it has been eliminated from the suspect list by the hospital. If not, I would say that it needs to be looked at. It is not at all unusual, and is a very real hindrance to quality of life, as well as giving a lot of discomfort. I would not have thought that sinemet along will cause this problem, but wearing off and on could cause a digestive system to work a bit intermittently. Sorry can't be of any more help, this is about the limit of what I know as a lay person, but hope that you are able to find some kind of solution.

Best wishes
Lindy

I'm no doc either but I would really work on helping try to restore her intestinal balance which might help with the diarreah.

My mom has some issues in this area and we have her eating fresh pineapple every day, plain yogurt without any sugar (sugar helps the bad bacteria thrive and outnumber the good bacteria in the gut), and smoothies made of unsugared fruit concentrates diluted with water, fresh fruit, with maybe some carrots or kale thrown in. She really doesn't like the kale but it is so good for us I put it in there anyway. Yogurt is really good for our gut so I'm trying to get her to eat this every day.

I've also cut out wheat products substantially as I have read over 40% of people develop a sensitivity to gluten as they age, as well as milk, cheese, butter, and of course anything processed. I want to be sure her issues are not being caused or aggravated by a food sensitivity, and as she goes on we can gradually re-introduce a food into her diet: if she reacts badly, we know to avoid it. We just started this regime so I can't say it works but it can't hurt, so we'll see.

If you look up pineapple you'll see it has bromelaine in it, which is very healing for the gut. Maybe this can help your mom, good luck.

Yes, I was thinking yoghurt with probiotics or kefir which comes flavored and is delicious with granola...anything to help restore that delicate balance that we take for granted.

Laura

Hello All,

Thanks so much for the replies. I have not had a chance to reply to your messages until tonight. I wanted to note that, based on my documentation, everytime I have spoken to my mother on the phone for the last 2 weeks or so, she has sounded very strong with regards to the tone in her voice. I think this may be a function of the fact that she has reduced her ldopa intake to around 4 - 6 pills of 25/100 IR per day as opposed to the extremely high dose that the doctors had her on a few months ago in attempts to truly understand her reaction to ldopa in general. I might also add that since she has been undergoing her lymphedema therapy for the excess fluid retention in her legs, I have noticed that she is able to rise from a seated position much more quickly than prior to the therapy, and, I have also noticed that her movement while walking appears to be much quicker and more fluid, e.g. much less "stops" after taking a few paces, then starting again.

She does continue to state complaints of loose bowel movements but she has not had the diarrhea in a few weeks. My aunt, my mother's sister, who is an RN, has also attributed and suggested many of the diet recommendations that everyone has made thus far.

We continue to take it one day at a time and also continue to hope for the best.

Many thanks to the continued support and suggestions.

All the best,

Matthew R. Smith

Hello All,

I hope that the 1st quarter of the New Year is bringing everyone joy and good health.

I have not written in quite some time and wanted to provide an update. Yesterday afternoon we visisited my mother's MDS in Philadelphia. The MDS is still leaning towards a diagnosis of MSA, but appears reluctant to "etch in stone" a particular formal diagnosis. The MDS feels that my mother is realizing "some" relief from her symptoms by taking her ldopa. I should mention that my mother has tailored her ldopa intake to 1.5 pills of IR taken 4x daily. This particular dosage has seemed to provide some relief from her symptoms and has, for the most part, eliminated her bowel issues that she had when taking the extremely HIGH dosage that I had reported back in December and January.

One issue that my mother continues to struggle with is her urinary incontenience. She goes to bed around midnight and wakes about every 2 hours thereafter with a need to urinate. She is, for the most part, able to get herself out of bed to go use the bathroom, however, she has extreme difficulty lifting her legs to get herself back into bed. She must wake my father every 2 hours when she needs to go to the bathroom so he can help her get back in to bed.

The results of the MDS appointment are as follows:

The MDS has prescribed an incontinence medication that my mother is to take one pill at bedtime for around 7 days. If she feels that it is helping, she is to increase the dosage to 2x per day.

After 2 weeks of taking the incontinence medication, my mother is to increase her present klonopin medication intake from .5 mg to 1.0 mg taken 1x in the evening prior to going to sleep. This medication is a sedating drug in hopes to help alleviate the stiffness that she realizes during the evening. My mother has been taking .5 mg of this particular drug off and on for a few months. If the 1.0 mg yields positive results, the MDS recommended possibly taking it during the day to attempt to relieve some additional stiffness that my mother realizes in the mornings.

After 2 weeks of attempting the klonopin dosage increase, the MDS recommended adding a "helper drug" in addition to the ldopa. I cannot recall the name of the drug off the top of my head but I believe it starts with a "C". About a year ago our previous neuro had us try Requip XL. The Requip XL produced horrible rashes on my mother's neck and legs and we obviously ceased taking that drug ASAP. This particular drug that begins with a "C" woiuld be taken, at first, with every other dosage of ldopa to first see if it provided any additional relief to her symptoms. If it does provide relief, the next step would be to take the drug with every dosage of ldopa. One of the side affects is diarrhea, and the MDS mentioned that if we experience that particular side affect that we are to cease taking the medication immediately.

That is about it for now. Any thoughts or comments are always welcomed.

Best Regards,

Matthew R. Smith

Hi Matthew glad to hear your mother is doing better on her present regime.
Can't comment on the new treatment she is about to go on except to say it sounds like the 'c' you are talking about is likely to be entacapone/Comtan (brand name). This will get more l-dopa to the brain, basically makes it more bio available. So she may need to re-adjust down once she settles on it. If she avoids the side effects it is a very useful drug. We are all so different and there are probably people who are msa but closer to pd and vice versa, so it's good that her condition isn't put into a box just yet, leaving it open helps. It sounds like you are all starting to understand what is happening a lot better, and that always helps too. Best wishes to you all.
Lindy

Hi Matthew,

I know that I mentioned before asking the MDS about your mom having a PET scan to help pinpoint a diagnosis. I don't recall if there was such a convo betweeen you and the doctor? Now seems like a good time to ask and maybe press the issue a bit. In January, the FDA approved DatScans which are used to differentiate between both those conditions PD and MSA. Insurers do now cover them. If it is MSA your mom should be treated for that now considering that she has been under observation and drug trials for quite some time.

It is not fair to make your family ride this out while she continues the lengthy, inexact process of diagnosing by observation and exclusion when there is a tool now widely available to differentiate her condition right away. Your poor mom is a trooper with all the drug trials and dosage fluctuations. I can't imagine how frustrated you all must feel. I would not wait until her next appointment, instead I would be calling the doctor and respectfully inquiring if your mother might have the DatScan, and if not, why is she not eligible?

Sorry to seem harsh, but your mom has been through enough already. I don't understand why your doctor wants to do this the old-fashioned way.

Laura

Hello Ladies,

Thank you very much for the replies.

Yes, the new medication that they would like my mother to start is called Comtan.

No, we never did have the conversation with the MDS about a PET scan. I am glad you reminded me, Laura. If I am understanding you correctly, we should be asking about the availability of a DatScan? We are to call the doctor in 2 weeks to report on the status of the incontinence medication, so perhaps that would be a perfect time to inquire about the PET Scan / DatScan?

Thanks a million!

Matthew R. Smith

Matthew,

Forgive me. I tend to use terminology indiscriminately when they both approximately do similar things. You want to inquire about a SPECT imaging...dAt SCAN is actually the agent injected into veins that reveal dopamine function or measure. I also had intended to provide links for more info, so here is some essential reading imho....


National Parkinson Foundation explains the whole thing; what to expect during procedure; what exactly is measured, etc.

The MJFF site has good info too!

I read that the scan should have wide distribution soon, but then an article at MJFF says it is now available in only 14 centers. I think having a more biochemical based diagnosis would be worth the trek. All you can do is ask....

Best,

Laura

Hi Laura,

Thanks for the reply and sorry for the delayed response. Both are interesting articles. It appears as if the University of Pennsylvania is a participant and that happens to be where our MDS is located! I passed the information on to my mother and we will be asking our MDS about this sometime next week when we are due to give her a call on the phone.

Take care and thanks again.

Matthew R. Smith