Produodopar

Hi I’m just wondering if anyone has started on the produodopar pump? My husband is starting on the 11th of this month and would be great to make contact with anyone on it.

Hello Bickley,

Welcome to our forum community. We just wanted to take a moment to say hi and make sure you’re aware of the basic tools we have to offer. The first is our website, Parkinsons.org.uk, which is kept up to date with news and research, and our forum archive is there, so all you have to do to see previous conversations around a topic (like the produodopa pump) is a quick search. And then we have a free and confidential helpline, on 0808 800 0303, staffed with friendly advisors with access to a range of helpful services, some of which you may not expect.

Here is a link to some information on the pump: Produodopa | Parkinson's UK. A quick search will yield much more, and if there’s an answer you can’t find do message us.

With our warmest welcome,

Jason
Forum Moderator

Hi it will be interesting how he gets on I’m just going through how to get referred can you tell how long it took for your husband to get on.thanks gus and welcome hopefully it will be great for you & your husband

Hi, Have just seen your message. My husband started his produodopa trial 8th October because his response to his oral medication was deteriorating and having hit his 70th birthday beyond which the risks / benefits of DBS become more questionable, that was not an alternative option. Of the 6 patients introduced to it at his hospital, we understand it didn’t suit two, so four are continuing and happily, he is one of them.
We weren’t prepared for the lengthy calibration period as they worked to get the meds levels right, taking it up bit by bit and monitoring. Various other tweaks had to be made - e.g. as he is very thin with little or no fat, a shorter cannula had to be ordered for the subcutaneous insertion to be comfortable and effective. He reached a balanced calibration mid December, and things are going reasonably well. We found at the start, and at each increase, he had a huge improvement, and then a day or two ‘crashing off’ as if the body was having a shock and needing to readjust. Then it would settle to a slightly improved performance on the new level.
Lifestyle for me as his carer has been hugely improved by the fact that he can get up on his own in the mornings, having had his medication steadily through the night. Late night sleep and care issues have not changed, so I desperately need the morning sleep-in his independence allows me to sustain the caring role. I was just about giving up in the autumn, so it has saved the day. Hubby finds the increased benefit is quite fragile and he can go into an ‘off’ period quite easily. Psychological aspects (he is quite OCD and panicky over change from routine) affect him more than they used to. He panics and stiffens up when under time pressure to get anywhere for an appointment, and becomes very ‘off’ and Parky. We summarise it as the ‘on’ times being very much better and longer and the ‘off’ times being shorter periods, but worse in effect under this treatment regime. On balance, he is better now than when he was when taking 26 tablets a day! He now takes ‘only’ 17! Functionally, he can play table tennis, table football and bowls - he might not win at table tennis and bowls, but doesn’t come last. He is very proud of his unbeaten winning record on table football, though I think that has more to do with his miss-spent youth than the Produodopa!!
How is your husband doing?