Hi everyone. As many of you know I had DBS last August. Didn’t reverse my symptoms 5 years as was touted by my neuro but patched me up to fight another couple of rounds. When I was switched on, after a day or so I noticed that it was much harder to speak: volume and articulacy were much harder to produce. Not so bad in the morning but by 3/4 in the afternoon I could hardly speak. So on my next appointment, they created a Speech Channel. Things went ok until about February this year: I felt that my off times were too marked in comparison to what DBS declared it would achieve and so a week ago, had another appointment with my ‘team’.
The lead programmer declared that via info she could gain from the DBS, I never had any issues with my speech. I insisted that I did and she then asked me to explain as I sounded ‘ok at the moment’. I informed her that it was always morning that she saw me and that whilst I may seem to be achieving a level of oracy, it required real effort and that by afternoon - effort of not - I would struggle to talk.
Anyway, she declared that Channel 1 was the one I should stay on. This gives my voice no support but is best for general PD symptoms. The Speech Channel (2), should only be used when I’m talking to a meeting or something that’s significant. Changing from 1 to 2 every day was - the programmer reasoned, why my symptoms were apparent.
Now here’s my question: a friend who spends time in the US, argues that bouncing between channels isn’t seen as an issue (which is how I played it from October to March): you select your channel to suit the situation. So is my programmer basing her viewpoint on gut instinct or science? She feels that by regularly changing channels, I’m not allowing the Main Channel to be fully accepted by the brain (is accepted the right word?). But when on this channel I can’t talk properly. Is her view based on gut instinct or science? Sorry for the length of post. Thanks for reading it.
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jeeves19
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You mention that in certain situations Channel 2 is more effective for speech. Are you able to adjust your settings as needed? If you are able, is there any harm in trying? I have no experience with DBS, though my son has brought it up several times. Is your programmer inflexible? It would make sense to me that our brains are responding differently at different times of the day. So accordingly the level of stimulation should change. Just my two cents. Thank you for sharing. 😊
I can change the amplitude (amount of power) a bit but that’s all. Channel 2 always gives a better vocal response but is slightly less good at controlling physical symptoms such as dystonia. Thanks for contributing.
This is normal response to changing stimulation to a different contact on the electrode. You would be very lucky indeed to compliment both speech and dyskinesia/dystonia, tremor on one electrode contact. The different contacts on each electrode due to where they are placed within the STN - where yours is - work for different symptoms "normally" on anyone with DBS. The programs are put on there TO USE. Not to sit idly by as your brain can't handle the changes. I'm surprised the way that the UK programmer thinks versus the US. There are approx 10 contacts on every electrode and with the 4 programs my husband has he can change to either of the 4 when he wants. He can change the voltage up and down. That is it. The Neuro/programmer tests those programs in-house rigorously for a few hours to see what suits him best for walking, speech, dyskinesia etc. One is a wide reaching pulse width which he didn't tolerate well but worked briefly for speech. The other lessened dyskinesia as it had a number 10 contact. Whereas for Speech a shallower contact worked better. Nothing has helped falls. I do feel you need to learn more on where and why and what each Program is set at and what it is achieving.
i find it sometimes the brain difficult to adjust the change and lost original effectiveness . I think if maintain a setting for longer time can achieve better therapeutic effects. That’s why I reluctant to switch sometimes
As much as that is how it works for limcheese22, that isn't specifically how it works for all people. The Programs when programmed correctly and the programmer knows your predominant issues/ symptoms then it can be used as an effective tool (for some) to keep things more on an even keel for different symptoms at different times. Eg: like you said for if you have a meeting, or social event. It certainly has worked well for my husband in the past like that. Also turning the battery down at night to save power (if necessary) works well but that is without changing program so a little different.
I am so sorry that your DBS programming is giving you so much difficulty. My husband and I live in NY and he had his DBS surgery in 2019. He never changes his channels and programming. His DBS device is made by Abbott. Although my husband’s tremors have resolved thru DBS, he still struggles with balance and soft, raspy voice. In the US, there is an online daily video for speech exercises which has helped tremendously. It is called the Parkinson’s Voice Project. Perhaps you could try it.
hello just had my DBS installed two months ago. For me, the speech impairment came with too much juice, which I understand to be standard. Now that you mentioned it, I did get a double message from my programmer, Ashley said don’t keep changing the amplitude, but then she endorsed the notion of a specialized program to change often on as needed
God. At last somebody who has had a similar experience! Yes, she doesn’t want me to change which means I speak with slurs and a lack of energy and articulation. How can that be beneficial for anybody?
I continue to be shocked by the way people treat you when you speak with obvious speech impediments. The level of disgust and lack to empathy is difficult to find and accept.
I’m not surprised at all actually. I feel that we’re mostly animal and part divine. The divine part (soul?) is our higher self which houses our best qualities. Unfortunately, this part of us doesn’t often get a look in, even though I personally believe this is the aspect of us that returns to God/source? at death. Most of the time we’re ruled by the animal and so deep seated fears, insecurities and discomfort about our own mortality rules the roost vis a vis daily experience. And being the ‘victim’ nowadays of peoples’ stares etc makes me realise what a little shit I used to be . 😂. And has Parkinson’s enlightened me? A bit but there’s still work to do. 😊
hi Jeeves thanks doe yrupdate. So footy to hear it’s not as successful as u hoped!
I have considered DBS but fortunately my symptoms have improved by going to chiropractor who specialises in the nervous system. Pls keep updating as I’m interested in yr journey
But again - everyone is different. HFS (high frequency) vs LFS (low frequency) sometimes changes. Certainly has for my husband, whom you know in your age, pure Young Onset (25 years plus PD and 12 yrs plus DBS).
Certainly not easy keeping all things controlled all the time.
I know very little about DBS (burying my head ever since it was brought up in clinic 5 years ago !)
I am sorry to hear you have this voice pattern.
I had a similar pattern with my voice at the time of diagnosis and some flattening of facial expression . Both disappeared after a month of low dose levodopa in 2017. My handwriting (micrographia) also reverted to normal in about 6 weeks.
My cousin (father's sister son) who developed Parkinson's (non tremor , bradykinesia etc like me plus foot dystonia like mine has retained his flattened facial expression, and a voice disturbance that gets worse in the afternoon identical to what you describe but has no off foot dystonia or on dyskinesia). He has low moods too and some memory issues. He was not much of an intellectual unlike his uncle (my father) . I am still pretty sharp on cognition and have an amazingly good memory.
I sometimes wish a small collection of people with various "pick and mix" symptoms like ours could have functional scans and get them studied by research radiologists and neuro scientists.
Have you tried regular choir style singing ? Would give your lungs and voice a workout.
Get your guitar out and have a singalong . I will write a case report on your outcome. Maybe do some fruity lyrics
On a more serious note, could you ask for a second opinion from a different DBS team in another area on strategy options. MDS is a relatively small clinical community in the UK and they often present clinical cases at national meetings ; some productive solutions do emerge.
Keep us informed. I will try and explore any other options.
Hi Pearlette. An interesting contribution and several points to pick apart. The voice is a really odd thing and somehow inconsistent. For instance my wife and I are currently abroad on a short break. We breakfasted this morning and whilst I was aware of some restrictions, I could communicate if being unable to display much eloquence or impart any ideas of real complexity. We decided to stroll into town (Porto, Portugal) and i asked ‘Should I put my DBS on channel 1 or 2? (The latter being the Speech Channel). My wife said ‘1’ as you’re not struggling too badly currently’. So we strolled around the city and I realised after about an hour that I was managing to apparently speak normally. This was weird as I have had occasions when on C1 whereby I could hardly speak, particularly in the evenings.
Having said this, we returned to the hotel and I decided to try - as you said - some singing. I noted a little tightness in the throat so went onto Channel 2. At its worst, it’s as if somebody has got a hand around my throat! But why at occasional other times it is ‘freer’ I can not say.
The NHS is a blessing and occasionally not (notice I didn’t allow myself to use the word curse 😂): you have your DBS, they then allocate you a nurse and a programmer usually sits in with us. I think my nurse is still learning all of the complexities of the technology currently. There seem to be some forces in my brain that are at odds at the moment. It’d be great if I had the time to explore them with a programmer. Mine might be up to the task, or she might not be and that’s the problem with a state funded healthcare system which I KNOW has more pluses than its American counterpart. But at times you can see how a dash of competition and a smidgen of laissez fair aren’t necessarily totally bad qualities.
jeeves19 . Have you been to Porto before? Was this your first time? Or have you returned to the location after a long time?
It has been noted that new travel destinations can be extremely useful in the mitigation of symptoms and I have read a few articles about this phenomenon.
Hi PD. Yes I was hoping for some mitigation myself but had real issues this evening sadly. I’m beginning to suspect alcohol as a factor oddly. I might curtail my fondness for cocktails for the next couple of days and see. 😂. First time in Porto, yep. Interesting town: definitely has a working town quality to it. The disappointment of the evening was an enquiry whether a busker knew any Beatles and that I’d like to duet with him. He claimed not to know any which I thought was ridiculous: ‘I know only modern pop’. Your loss meester. 🤔
I am not surprised that you had the difficulties you had with singing ?
I remember being told that 60% of adults over the age of 60 have some minor loss of motor function, and any intercurrent illness like the flu, chest infection , even a UTI can cause a temporary reversible problem with swallowing. In a similar vein that kind of describes our Parky muscles too.
SVLT and other voice training would be optimising the motor muscle power and function (as would singing) . The motor areas for speech are all in the left side of brain.
Is Bristol the only place your local neurologist can refer you to for the DBS ?I am assuming you have a local neurologist. Is that person an MDS or do you have a visiting MDS. If you can let me know who that is I may be able to figure out who is part of their peer group. May be better if you sent me that information directly to my email .
I share your misgivings about our publicly funded monopoly employer NHS. But there are ways of working around that.
Another suggestion is contact Medtronics ; they will have a medical advisor and scientific advisor . They often have a local rep who liaises with programmers etc and use such opportunities as a PR exercise to promote their product.
I will need to do some reading up which I have been putting off for sometime; partly from being worn out from a year of awful painful dystonia at the site of minor gym injury . I have taken Feb and Mar off and probably will take the whole of April off to try to shake this off (currently having regular Feldenkrais sessions and slowly winning (?). Will also try to see my neurologist sooner; I am due to see her in December but should be able to sort coffee date with her)
In the meantime keep yodelling. I am sure it will help a bit.
I was wondering if we could use this opportunity to see if we coud set up a group to see how we could leverage the best value from the NHS. I do have some success at working the system from the inside as doctor )
It is ridicuous that the NHS spends so much money on the technology but cannot optimise outcomes for an individual.
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