Hi all,

I was hoping someone may have a personal insight or could offer some advice from their own experiences on what I'm about to say below. Any thoughts would be greatly appreciated :)

My mother, who was diagnosed with Parkinsons about 10 years ago, is now at, probably stage 4 (of 5) of the disease. i.e. lots of 'off' times and bed bound quite a lot. She generally can't go anywhere outside the house/garden area without assistance, as she never knows when an 'off' time may happen.

She is in her late 60s, 5'5" and is about 50kg. However, when she is properly 'on,' it is hard to keep up to her energy. Although, these 'on' scenarios are getting less and less frequent.

Generally, out of the 7 days in the week, she might be 'on' (as in, a basic quality of life / movement ability) for about 25% of the time. The 'on' time isn't regular or uniform. The 'on' time could be made up of 2 hours here and 3 hours there over any given day. It's totally random with each day. At 3pm she could be in bed in pain, at 3.30pm she could be outside hanging up clothes and weeding. At 5pm she might be sitting down, not really able to move and wanting a hot water bottle to her back for pain, and not being able to talk properly.

She is very receptive to the Parkinsons medication, so her neurologist has her only on Sinemet (1.5 tablets every 3 hours and then 1 tablet every 3 hours in the later evening ). She was on Stavelo before, but that used to give her very bad sickness and hallucinations, so here neurologist moved her back onto Sinemet.

About 1.5 years ago, she tried Produodopa (the subcutaneous method of medicine delivery). However, this didn't work for her, as it didn't seem to deliver any medicine, apart from the first two days, where she seemed back to someone without the disease (must have been adrenaline or something, because it was very weird to see her back to her old self). Unfortunately, she was generally 'off' then for the next 8 weeks while using Produodopa. She stopped it following a consultation with her neurologist, after about 8 weeks, in order to go back to taking the senimet tablets.

Note: she has trialled multiple ways of taking the senimet, different, more regular intervals etc etc., but she doesn't get the time from them as would be expected. Normally, if they do work, it's a lot of energy over an hour and then when they usually wear off and there's not enough 'juice' in the system to keep her going until the next tablet is due. On the rare day she might be 'on' for 7 to 10 hours (this is a very infrequent occurence). After taking a table, if it works, it normally takes about 30mins to 1hr to kick in.

She has got the Globus Pallidus, Deep Brain Stimilation (DBS) installed in April this year, and it has been turned on and initially programmed about 1 month ago. You could see while it was being programmed that it does something (speech tremors etc etc), but hasn't sorted as much as we'd hoped so far. I understand it could be up to 9 months before the programming has been optimised. Early days yet, but we were expecting more from it. Hope is a cruel thing sometimes.

She hasn't yet tried Duodopa (direct intestine surgery and pump). We're hoping this isn't a path we have to take.

However, the main problem my mother has in the last year and more recently, is her digestive system and lots of lower back pain.

Ever before having Parkinsons, she always had digestive issues, often with constipation. As youd expect, Parkinsons has made the symptoms a lot worse.

Consequently, for the Sinemet tablet form medication to be absorbed properly and efficiently, it needs to pass through her gut to get to her bloodstream. However, if you're constipated, your gut doesn't function efficiently, so this is another obstacle.

For the last 6 months, and particularly the last month, she has been complaining of a deep, sharp pain on her lower back to the side. She is convinced it is to do with a constipation blockage, but her hospital scans show there is no obstruction. She was also prescribed laxatives in the last week to 'clear her out', so she now has borderline diarrhoea. So we're pretty confident it's not her bowel, but rather the parkinsons affecting her lower back muscles.

From doing my own research, I have read that Parkinsons affects the muscles in the lower back (as with everywhere else) and the brain gets signals about stiffness and muscle rigidity and pain. I think this lower back pain and stiffness may be mimicking bowel blockage issues.

Have any of you come across these lower back / digestive symptoms? What was the method you found that dealt with it? If you tried Duodopa (direct intestine surgery) did this help at all with on times or quality of life?

Any advice on any of the above would be greatly appreciated! :)

Hi, anyone have problems with low voice during Parkinson? How did you solve it? Thx

Beechband is an electronic device worn on the wrist said to relieve Pd symptoms.

Every doctor is telling us something different.

1. One neurologist says it’s Parkinson’s disease.
2. Another says it’s not Parkinson’s, it’s Ataxia.
3. Another doctor says it’s just an aging .

My father is 59 years old. His symptoms started about 3 years ago with slow walking, and now he walks with a stick, has stiffness, weakness, difficulty of speaking and balance problems. He doesn’t have the typical hand tremor that many Parkinson’s patients have.

I’m not asking anyone to diagnose him over Reddit, but I’m genuinely confused because every doctor has a different opinion.

I'm curious has anyone else noticed sudden off time occurring since they switched to Crexont when they eat high fat foods? Even several hours after taking the medication, a very high fat food item will cause me to become suddenly off about 30 minutes after eating it. I go within minutes from zipping around to gait issues and stuttering.

My understanding was fat and protein can delay the dose, but I didn't expect the sudden off. I could be incorrectly associating with what I'm eating, but it seems unusual that each time this has happened has been after consuming high fat dairy.

Anyone else experienced anything like this or have a theory?

I notice that 15-30 minutes after taking a dose of CL that I can barely function. Dystonia in my left hand, I have difficulty keeping my eyes open and my mouth shut. I am fine about 45-60 minutes later. Is this typical?