Awake at 5.30 but managed to get off to sleep again, and didn’t get up until gone 9am.
I have a lot of tremor on both sides this morning, and increase the right hand voltage on my Neuro stimulator to 2.3v. That pretty much sorts out my right arm, but my left leg tremor is as bit of a nuisance. I’m already at the maximum voltage allowed on the left side (within Group “B”settings), so I’ll just have to grin and bear it. Hopefully its something that we can address when we go to the NHNN for a tune up tomorrow.
We leave Brighton at 11. 30 to visit my wife’s grandma near Newbury. She turned 100 years old earlier this year, and has just gone into a care home. She recognises my wife, which I’m very relieved about, but it’s sad to see how much she has deteriorated in just a few months. She seems happy and settled, though, and that’s the main thing.
Next on our whistle stop tour is Stevenage, where my daughter has just started a year’s placement as part of her biochemistry degree. We arrive in time for a cup of tea and to sample one of her freshly baked fairy cakes, so that was good timing!
Then we are on the road again, on the final leg of our journey – homeward bound. Tremor is coming back on the right hand side (probably because I’ve had a long day), but I don’t want to play with my device settings any more today. Dystonia is still around, but has been well suppressed these last few days, which is a relief. Dyskinesia, ditto. My mood and motivation are still great. Balance isn’t wonderful, but it’s been worse. My walking is a little wooden, and I seem to be getting out of breath very easily – I’ll have to mention it to them tomorrow, although I have previously mentioned my wheeziness since my operation, and this was dismissed as not related to my DBS. If it isn’t, then it would seem to be a bit of a coincidence – I’m not a great believer in coincidence.
hi, ian! i’ve been following your blog and i’m very much reminded of my husband’s struggle to make this work. you are right to be skeptical of coincidences; especially when the same symptoms disappear with a different setting 😉
also, after years of trying to adjust voltage i came to the conclusion – it does not work very well. what i found to be a better solution is to switch between setting groups. for instance, atm group a and b are settings for my husband that work fairly well in controlling his symptoms. if he is on group a and that seems to lose its effectiveness i switch him to group b! if, after a while, group b deteriorates back to group a he goes and now a seems to work again.
i thought you might want to give that a try. i realize everybody is different but switching between settings has worked much better for him than trying to adjust voltage in an individual setting.
good luck!
Hi Trauti
Thanks for your message. I do switch between settings as well as adjusting the voltages within a particular setting, but hadn’t reverted to a Group once I found it to be ineffective, until last week, when I reverted to Group “A” settings (which had caused me problems within 24 hours of the settings being programmed). The settings worked just fine, but began causing mr problems again 24 hours later – so, yes, I agree that previously ineffective settings can be re-used once the brain has had a break from them! Thank you, also, for reading my blog – much appreciated!
Cheers,
Ian
ian, settings that last only a day or less i tend to write off as failures and don’t consider worth going back to. but those he does well with for 3 or 4 days before they become ineffective i alternate. atm i’m lucky i have 2 to choose from – a and b – and both use interleaving.
i might be wrong but i believe my prior method of adjusting voltage within an individual setting did more harm than good. just be careful since it seems that you also belong to the group of people where settings don’t last 🙁
i’m always amazed when i hear that some dbs patients don’t need adjustments more than maybe once or twice per year.
also, what is the uk’s stance on tasigna? i have been trying desperately to find a doctor here who would prescribe it off-label for my husband. i was so impressed with the results from the georgetown trial last year even though the trial group was so small.
Hi Trauti
I did try reverting to Group “A” settings today, because Group “B” wasn’t cutting it with regard to left leg tremor. I did whack the voltage right up on the left hand side, too, and that seemed much better. The cost will be dyskinesia later on, but perhaps I’ll just go back To Group “B”at bedtime…
Not heard of tasigna – I’ll have to Google it!
Cheers,
Ian
just in case your google is different than mine! 😉
http://journals.lww.com/oncology-times/Fulltext/2016/01100/A_New_Use_for_Nilotinib___.12.aspx
I did know about this, but didn’t recognise the brand name! Parkinson’s UK website has the following short summary – “Much more exploration is needed to determine how safe the drug is and whether it works in people with Parkinson’s.”. I guess it will be some time before it’s approved for use in PD in the UK…