DBS and bladders!

[ponco]

HI Im 50 now and have had pd for about 19 years now, Im not sure of actual date as I was misdiagnosed for quite a few years . 5 years ago I had DBS surgeryand after a lot of hospitol stays Im now so much better but with the covid I have not been able to go to clinic in Walton to be tweeked . By now Im feeling much more tired and also suffer bad incontinet (sorry about spelling I speak Welsh so my english is a bit rusty) Ive been going to local hospital to see if I could have botox in bladder and a little left over for my droopy face. If this would work it only lasts about 6 - 12months and it could leave me needing to catheretise myself (not a very nice thought) Has anyone had this and how did it go ?? I know we are all different but it would help to hear from you.
I was on the internet reading up on the good parts of dbs and found myself reading about dbs and bladder problems. Ive had dbs 5 years has anyone been programed for this problem after having dbs first I hope someone can help me xxx Ponco

[Reah]

Hi @ponco,

Welcome back to the forum.

I’m sorry that you haven’t heard from anyone as yet, however, I thought it would be helpful if I jumped in to help you.

Many of our members have undergone DBS surgery and I have listed a few threads below where others have spoken about their experiences which I’m hoping will be useful to you. Please see below:

DBS. A year on

I had DBS installed in March 2015.  Earlier this week, I was assessed to gauge my progress. My medication was stopped the night before.  I could just about bathe and dress myself though walking involved a lot of shuffling and gripping of door frames.  I could still tie my own shoelaces (Jubilation!).  My assessment started at 9.00am and would take the whole morning.  I was given a memory test and videoed performing various tasks.  Then my DBS was switched off and I performed the tasks again.  I…

Dbs

Hi @Reah, thank you for bringing me in on this, I will do my best to reassure Caroline. Hi @carolineb211, I have got a DBS so I hope I can help. As it is, I sympathise with your frustration at being put on such a long waiting list and this Corona Virus isn’t helping any of us, hang in there and try to stay in positive thought it WILL be worth it when you actually have it done. Naturally, when you do go for the operation they will have to check that you haven’t got or had Covid-19. Oxford is …

Feedback regarding DBS

Hi. I'm new to the forum. I'm seeking help in relation to DBS. My husband was diagnosed with Parkinson's 10 years ago at 47 although looking back he probably started with it at 42ish. He didnt have much of a tremour but struggles quite bad with movement especially walking. His speech is affected and he gets very drained and exhausted. He works so hard as we have our own business and the business has motivated him to keep going and he has not let the condition rule him. He's managed the conditi…

Off state

Hello al my brothers and sisters in arms latest update re my DBS referral, This is an edited for privacy version of letter sent to my PD specialist Re: Karen Missenden DoB: 10/12/1965 Thank you for asking us to see Karen for consideration of deep brain stimulation for her young onset Parkinsonism. As you know, I have met her before as part of her Exenatide Trial, but I did not see her when she was first recruited, and therefore it was good to go over the history in much more detail today. She …

If you’d like to speak to someone about this in more detail, please do not hesitate to contact our helpline team on 0808 800 0303 - our advisers would love to support you further on this.

Best wishes,
Reah

[cruisecontroller]

Thank you @Reah for contacting me regarding this topic. As it is @ponco i’ve had mine for 8 years now(i’m 68) and am on my second battery with an i-pod for a controller, as yet there have been no side effects with mine. My only frustration was that the consultant at Addenbrookes, Cambridge did not listen to what he was being told by my wife in that I had TWO tremors, Parky AND Dystonic but it was poo pooed away as a load of nonsense. After the Operation, OH, you appear to have another tremor, you was told beforehand but what do us peasants who live with it on a daily basis know ?!!? LOL Certainly a lot more than they do with them only seeing us once in a Blue Moon. Fortunately i’ve moved out of the Cambridge catchment area and now come under Southmead Hospital at Bristol. As a foot note, I normally come on here at the weekend, it is rare for me to respond during the week unless i’m following a topic. How I missed poncos topic is beyond me but i’ve responded not that it is much help to them but hopefully to someone else !! By the way @ponco, your English is better than mine even if you are a bit rusty !! LOL

Les