Duopa anyone?

[jackswife]

My husband's neurologist has recommended he get a Duopa pump. His C/L meds don't work as well anymore (lots of 'off time') so this is the next option. The pump is similar to a feeding tube and uses a daily cartridge to deliver C/L in gel form directly into his blood stream, thereby avoiding his stomach. Have any of you had this procedure done? If so, how is it going? His surgery is scheduled for December. He'd like to wait for the subcutaneous version (less invasive) of this but it's still with the FDA for approval and no one knows how long that will take. Thanks for any information.

[MadgeB]

My daughter had this procedure a few years ago. It made an enormous difference. We were told how expensive it was for the NHS so had to wait for approval but she had to be weaned off agonist drugs due to the compulsive behaviour side effect then had DBS which did not give the hoped improvement so this was third time lucky. Without it her symptoms are deteriorating so she manages the inconvenience of wearing this daily device. A recent problem that has occurred is overnight when it is disconnected she cannot get to the toilet so her partner now has to take her. We have sourced a wheelchair. She is 52 diagnosed 15 years ago.

[Following_closely]

I have no experience with this, but yesterday I happened to listen to an old episode of "The ABCs of Parkinson's Disease" podcast (season 2, episode 7) on apomorphine:

oruen.com/category/podcasts

As with duopa, I have no experience with its use, but it sounds like a possible alternative. Maybe more to the point of MadgeB 's comment, they present it as a possible solution for lack of mobility at night. Maybe somebody here can comment on its use.

[Goldfoot]

Hi Jackswife

My husband had this done in the UK in July 2022. it has been wonderful for him. It doesn't take all the symptoms away but it evens out the ups and downs of "on " and "off" periods you get on the meds taken in pill form.

My husband stopped falling after he had it done. This was great as he had been falling every day before. I think soon after he had it done he felt a bit down. He was hoping for a complete miracle as opposed to a partial one! Also one of the nurses told us that you get less dopamine on the duodopa pump than in the pills and the brain can feel a bit low due to having less dopamine. You get used to this. He can feel distinctly down and unmotivated before I put the pump on for him in the mornings. But again this lifts within half an hour or so of the pump starting.

We use the brown waistcoats with an inside zipped pocket for the pump for every day wear and a cotton pouch around his waist next to the skin for the stoma tube so it doesn't dangle. The waistcoats didn't fit so we took them in at at the sides around the ribs and a bit lower and at the shoulders to help the pump sit quite close to the body. That way its not clanging around. And we had four waistcoats delivered so one or two can be in the wash.

Its true that nights can be a problem but I am told he could wear a pump at night. Im not sure thats a good idea for us yet but its good to know its possible. The pumps are quite weighty so I can't quite see how one could get comfortable with that at night, but who knows - there may be solutions for that!

I think having the stoma put in was uncomfortable but was a short procedure. Afterwards he had to spend a few days and nights in Southmead in Bristol while the amount of drug was "titrated". It takes a while to get the dose right and overmedicated looks quite like undermedicated and they need to take time to see what effect increases and decreases are having.

We are cautiously optimistic about a high dose of vitamin B12 liquid which he has been taking for about three weeks under his tongue and intermittent fasting. We eat between 1pm and 8pm, with low or no protein in the afternoons - protein in the evenings instead. You do get hungry by 1pm, but my theory is that hungry is good because its acting like a cleanse.

I've been reading John Colemans Rethinking Parkinsons book.