My dad has parkinson since 2015. His symptoms were under control until September 22'. In september he started developing pisa syndrome. He leans to the right side and walks like a drunken sailor. It affected his gait and his balance. His decline went downhill until March where he was hospitilised in critical condition for bowel obstruction. They cleared his stomach with an NG tube and he was asleep for around 3 days (still a mystery). He was of his Sinimet , prempexiole and amandatine for those 3 days. Once he woke up in the ICU they introduced back his medication. The first thing we noticed when he woke up was his straight back. He was sitting lilke a lord albeit his weak status.
They slowly introduced back his medications and he started experinceing hallucinations so they cut out his amantadine and prempexiole within in hours we got my lucid fathers brain back. He was back at work with his laptop.
He came out of hospital a week later very weak and immobile from loosing muscle mass but yet he was as straight as could be.
He started intense rehab muscle training and gait reprogrmamming and regained his strength and mobilty.
Slowly as the weeks went by his back started falling to the side and he is now leaning to the right even when sitting.
His sinimet was replaced for mucuna as he was experiencing on and offs. He is doing great now but his pisa syndrome is back and no exercise can help it.
is it drug induced? can anyone help me work out this mystery?
why in the hospital and the week post hospital was his back straight. That was after lying immobile in bed for 8 days. Was it those 3 days of clearing out his stomach of any levedopa.
posture training isnt helping him as it is a cognitive thing or drug induced.
Anyone can shed some light on this?
Im in a rush, sorry for any grammer mistakes
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lisa103
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You mention "bowel obstruction". I used to suffer from this, but almost fixed it by using macrogel and, seperately, enemas.
Regarding Pisa syndrome, I have this and a lean too and, possibly, a twist too. This increases as I walk, becoming a problem after, perhaps, 6 miles. A backache then develops.
Keeping myself well medicated seems to help, but doesn't stop it entirely.
A ski-pole helps.
Putting my arm over a friend's shoulder helps.
Being supine helps. A 30 second stretch gives relief for, perhaps, 5 minutes.
I wrote an app which continuously measures the lean and beeps when the posture is bad. The hope being that you develop the habit of constantly adjusting your posture. This has made little difference.
Recently I've been trying a low-tech version of this. Pulling down a wide brimmed hat until I need to correct my posture in order to see where I'm going.
Hi Lisa, similar experience with husband's stooped posture. Beginning of the year he was in hospital 10 days for a hidden bowel impaction that made him unable to urinate. He was 10 days either in bed or placed in a chair, but almost no movement due to the falls risk and catheter. Madopar medication was often brought with a "sorry we're hours late". When he came out of hospital I envisaged having to strengthen him up to walk on his rollator. But for a couple of days, he walked around without his 45-90 degree stoop and without his rollator or even a walking stick. The medication had not been altered. He slowly went back to his stooped posture. The only explanation could be that he slept for many hours during the days or/and his bowel was totally cleared.
Since then I do put him down for naps regularly and we're using Movicol and Coloxyl with Senna religiously every evening to make sure he's not constipated, but he's never been as good as those few days just out of hospital. I wish I could replicate whatever it was that recovered his brain temporarily.
Hubby has it too and we’ve never been able to treat it. We tried exercises and stretches but they didn’t help much. It does seem randomly Better some days when his meds are acting differently. It is way worse when he is tired…used to be he’d go for long walks and at the end he’d be leaning over sideways to his right at an extreme angle.
After hubbys last colonoscopy, he had a window of about a day where it was like the Parkinson’s went away. I assumed it might have been from the anasthesia used. Could this explain the remission?
I believe, for a colonoscopy, you get a prescription for a bowel-cleansing solution, and you have to drink about a half a gallon of it over the course of some hours before the procedure. So, if this is what your Dad needed to do, he actually emptied his bowels himself. Maybe you can work with his doctor to obtain another prescription for this stuff to see if it enables him to replicate his success? (The solution is kind of harsh, and his doctor might not want to put him through it, but it's maybe worth asking?)
Absolutely. My own two colonoscopies had me in PD dream heaven for a few days and I had to stop Sinemet because even one pill would put me over the top. Years ago, a Gastroenterologist had made this anecdotal observation with other Parkinsons patients.
She said that the effect / response might have been due to the anesthetic used which is PROPOFOL.
After your experience with the same, I am beginning to doubt if anyone has any clue including the doctors.
If dopamine neurons are dead, then where is the extra dopamine coming from? If it was not just dopamine involved in the disease, then what else are we missing?
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A little afraid, my husband just diagnosed. I have m.s. and don't know how I can help him. He comes home from hospital this weekend.
Dr. Mark Gallay will join our Zoom meeting, Sunday, Nov. 17 to discuss MRI guided FUS Palidothalamic Tractotomy (PTT)
Help with my Dad
Experience of Parkinsons in a 77 year old ?
