Hi everyone, I'm new here. My name is Steph and my mom was diagnosed last year with PSP, although her symptoms have been present for around 4 years. We spent about 2 years thinking it was Alzheimer's. Despite how hard this diagnosis is, it was nice to have some certainty with a more accurate diagnosis. It's so nice to find this community, as this disease is quite challenging and it be quite lonely and overwhelming to care for a loved one with it.
I thought I'd bring up an incident from today. Mom has been having trouble with her bowel movement for some time - my Dad is her primary caregiver and noticed she's been having inconsistent visits to the toilet for "number 2".
Today, Mom and I spent some time in the toilet. She was really trying to get a bowel movement and we were in there for 20-30 minutes and she was sweating quite a bit. Unfortunately Mom's communication has suffered tremendously from PSP. I noticed she was having trouble, but she wasn't telling me what was happening.
She was standing up and I was asking her what was going on and she wasn't speaking. Then her eyes began to roll back and she lost control of her body and began to collapse. She lost consciousness and was unresponsive. My Dad and I got her shorts on and she slowly started to regain some strength in her legs and regain consciousness to walk to the car. We drove her to the hospital (where we live, there is limited emergency services), and the doctor did a check up and determined that her collapse was because of her constipation and trying to force a bowel movement. We got a prescription for an enema and some medication to help with bowel movement and came home, where she's now sleeping after an eventful day.
It was quite terrifying to see her lose consciousness like that, and I thought I'd post about it to let folks know about the importance of following up on inconsistent bowel movement. I hope that it helps someone avoid a scare like the one we had today.
Much love to you all with PSP and those caring for loved ones.
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seleonore93
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Patient here. I learned this lesson the hard (no pun intended) way when I let too much time pass between going. I’ve never been an every day person but once I let it go way too long and ended up in the ER where a doctor gave me an exam that felt like I was a cow and he was a large animal vet in up past his elbow. It was so embarrassing and I never want to do that again! It’s a great motivator now.
My concern for your mom is the straining. That’s not good for the heart. Is she straining because it’s stuck or because she doesn’t need to go every day?
Thanks so much, and sorry to hear about your experience at the ER, we had a similar experience though the doctor was very gentile and communicated throughout. She was straining because it was stuck. Luckily the doctor gave us a prescription for enemas plus laxatives for every morning to help with movement. We're going to monitor going forward and she's taking it easy for a few days with lots of rest.
the resthome gives my dad laxatives every morning to prevent constipation which he would otherwise get bouts of and makes whole condition much worse. that said, when he goes, he strains (loudly) to evacuate. Mostly he goes and just passes wind - he might do that 1-2x before he will actually evacuate. I do understand that constipation is part of PSP. All that said, he still gets constipated even with the laxatives and all the straining. Recently my mother started an ayruvedic solution which is to mix a spoonful of ghee into a few mouthfuls of hot (drinking temp) water/coffee/cocoa or whatever is flavourful for him. Since then while he still straining, he is going everyday. Due to his condition, it will not work forever but for now, its part of keeping him comfortable.
The straining has been going on for a long time before he was diagnosed and while he was still independent at home. He also suffers from hypotension (low blood pressure) in which during an episode, his eyes will roll back and he will become non-responsive. This never happened during toileting though - it just happens from time to time. Now he is on a blood pressure raising medication 3x a day which does appear to work most of the time.
We got some laxatives to take every morning with breakfast, so hoping that helps. I'm thinking of adding more fibre rich foods to our diets as well. I'd never heard of the solution with ghee - I'm glad that it's working for your dad
I know. We tried everything fiber related.....fruit, more greens, prunes, dates etc but nothing changed. I understand the ghee makes the intestines well lubricated and his something called butyric acid which is what helps the constipation.
Hi Steph, So sorry to hear about that frightening episode for you, your Dad, and your Mom. Just want to add that along with the increased fiber it is important to make sure she is getting a good daily amount of liquids. And, as happened with my husband, that can become tricky later on when there are issues with the swallowing reflex and just drinking water or juice becomes difficult. Sending you all a big hug, Purrlie
Hello Purrlie, thanks so much for your kind words and response. Mom usually gets a decent amount of liquids every day, she's good for making sure she gets plenty of water. Do you have any suggestions for how to make swallowing less challenging as her reflex becomes less reliable?
It is good to know that your Mom is able to get plenty of water, that's a big help.
My husband's swallow reflex suddenly deteriorated really rapidly, over the course of about 4 weeks, to the point that trying to swallow anything could trigger intense coughing and choking. He also started to have lots of problems with copious amounts of phlegm and saliva that were hard for him to clear. For other folks dealing with PSP, swallowing difficulties seem to be much slower to develop and those folks adjust by going to a soft diet, pureeing foods, making smoothies, using thickeners for juice, water. Smaller mouthfuls and sips help. As the swallowing becomes more difficult, taking time to eat and drink seems to help many folks too, being very purposeful about chewing and swallowing, no distractions like TV on while eating/drinking for example. A Speech Language Therapist would be a good idea, both to assess your Mom's swallow and to recommend steps forward.
This site has lots of information in posts dealing with swallowing problems, and lots of suggestions of things to try, things that work, things that didn't. One thing that becomes quickly clear is that this horrid disease affects everyone pretty much the same way but differently at the same time, and it progresses at different speed in each PSP patient.
I hope that this is a little helpful, and I am so glad you found this site. I know you will find lots of information and good suggestions here, and a caring community.
Purrlie, thank you. Your response is so helpful and so thoughtful, I really appreciate it, and will be passing the info along to my dad. Sending a hug right back your way x
Great suggestions here. We find, like with most things, we are trying different possible solutions. With my mom, we were able to gently manage with sone change in diet. Mom is now on all pureed, so the pendulum has gone the other direction. Always such a challenge.We added pureed, RIPE pear to mom's breakfast oatmeal, also in smoothies and cooked soft pear for dessert. It was a gentle natural laxative. As foods are pureed, especially vegetables and inserting added liquids, was a help.
These are our experiences about constipation and PSP:
On our case, constipation have been corrected by applying an intensive Mediterranean diet based on fruits and vegetables, abundant liquids (In particular, around 100 c.c. liquid before breakfast- always with thickeners) and helped when difficulties by the drug Duphalac (lactulose, an oral osmotic laxative), but on some patients it produces annoying internal gases. As an alternative to Duphalac we are testing "Movicol" (polietilenglicol and various salts) which is notably more active and does not produce gases. The problem is to find the right dose per day to achieve a regularity. At this time we are trying around 4g Movicol in the morning at breakfast alternating with a doce (1 gram) of “Plantaben” (seed shells of Plantago ovata- Ispaghula husk) with success (although there are some days that do nothing that lead to days to do much). (Higher doses of Movicol (6g / day, etc.) could produced too intense effects but, over time it will be necessary to increase the dose. Yogurts with pieces of plum (at lunch) have been of special help and maintenance. Avoiding lemon juice, chocolate, bananas and rice, helps.
Keep in mind that some opioid analgesics as well as antitussives that contain codeine favor constipation.
Staying quiet favors constipation. A program of gymnastic exercises, especially walking, favor regularity. If it is not possible to walk, a walk, even in a wheelchair, always helps.
In case of not “open bowels” in 2 or 3 days, it is interesting to consider the apply a Micralax cannula (citrate / lauryl sulfoacetate) rectally or in persistent cases a lavative. Ask physician.
It is normal that when the PSP disease advances the problems with "open bowls" are more complicated.
About three months ago and after living with PSP for 8 years, we have perceived that the remedies that I have outlined in the previous paragraphs to achieve a regular "open bowles" have begun to fail. Now, two or three times a month and despite regularly providing "Movicol" or "Plantaben" periods of two days are given without evacuation. On the third day we apply "Micralax" which generally works. If in spite of everything in three days have NOT evacuated, we apply a 250 ml "Enema Casen" (rectal solution) containing 139 mg / mL and 32 mg / mL of anhydrous sodium dihydrogen phosphate / anhydrous disodium hydrogen phosphate which, so far It has resolved the situation.
In our case when there are cases of delays in "open bowles" that result in greater anxiety and nervousness than some alleviate with infusions of relaxants or an extra dose of CBD Oil.
It could later be the reverse too as episodes of fecal incontience.
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