I have early onset - am now 48 was diagnosed at 24. About 6 years ago I started freezing / festinating and falling - I become can become very rigid and seem to lose all sense of balance, I have no dyskynesia, dystonia or tremor. I am currently on simenet, Ropinerole XL, Amantadine and rasagaline and take clonazepam to sleep. I am seriously considering DBS but have been researching and have found conflicting evidence about the benefits of DBS for the treatment of gait related Parkinsons symptoms. Some articles even say DBS makes gait issues worse Can anybody offer a personal perspective or advice please?
Hi Lexi
I don't know if this helps or not but I was similar to you (I think) as I also had early onset. Most of my problems seemed to be non-physical but eventually (after about 12 years) I started freezing/festinating & falling.
I was on Rasagaline, Amantadine, Stalevo (150mg) 3 hourly & occasional Dispersible Madopar but became so bad that I became a virtual recluse as I lost all confidence in going out after having a couple of scarey experiences of "freezing" in crowds.
I was also experiencing terrible mood swings and anxiety attacks - one minute I was on cloud 9, the next I was in the depths of despair. So I was prescribed Mirtazapin anti-depressants along with Zopiclone to help me sleep.
The trouble is, with such an amount of Dopamine being ingested (Amantadine combats this to a certain degree), it caused me to have dyskenesias - mainly in my left leg in the evening. It didn't really bother me as I was more worried about the freezing - but my wife was really embarrassed about it especially on one occasion when she thought EVERYONE was staring at me (I'm sure they weren't but you can't argue) whilst sitting in a restaurant one evening on a rare excursion out.
As I was beginning to withdraw from society (I really couldn't see myself EVER going on public transport again), I asked my neuro about DBS. She referred me to Prof Tipu Aziz, consultant neurologist at the John Radcliffe Hospital In Oxford. I was, by this time, very "twitchy" though I never experienced any tremors.
After assessing me over a few appointments, Prof Aziz's team suggested bilateral GPi DBS which would control my dyskenesias and they could then control my freezing with the Stalevo - STN DBS was not thought to be suitable due to my mood swings.
Anyway, to cut a long story short, I underwent surgery in June this year. It has, for me, been an incredible success - absolutely NO dyskenesias now, no twitching, my mood swings have almost gone (that took a little while - but, again this can be controlled by smaller doses of Stalevo but taken more often). I must admit that I DO, very occasionally have minor bouts of freezing but it doesn't worry me any more whereas I used to panic - I have recently returned to work on site as a bricklayer - the exercise certainly helps.
I have recently been to a premier league football match and felt fine among the crowd; went to a concert at the O2 in Shepherds Bush by public transport (although I did have a minor panic attack but overcame it); took the tube into Central London the following day to meet my son for lunch - all things I never dreamed of being able to do ever again!! It has really been as if my life has re-started!
So, although at the moment you probably feel the above doesn't apply to you, it may well do if you should start to suffer dyskenesias.
Hope it helps,
Regards, Gary
Thats really great news gary,its amazing what dbs does !
Thanks, Gus, it was your positivity that helped me forward! Are you sorted out now after your battery replacement episode?
I forgot to say that I was so bad before DBS that I had to use a bottle every night when I woke up (which I did regularly) as I couldn't walk as far as my bathroom in the next room. I also could not function in the morning until my first dose of meds kicked in so I felt there was no way that I could ever again stay with friends or stay in hotels on holiday or whatever but now I can walk to the loo in the middle of the night if I wake up (although I very rarely do now) and am able to get going in mornings, no problem.
As I said, DBS has really turned my life around and I would not hesitate to recommend it.
Yeah battery replacement fine in and out in a day but before I was going on my hols thought I would have a tune up to see if I get walking bit better well tried retuning and didn't go well so nero but me one entacapone and azilect to boost sinemet and never felt so good walking great now .thanks for asking all the best
Lexi
Have you looked into undergoing DBS yet - and how are you getting on generally?
Gary
Hopefully DBS may help Lexi certainly Gary (and Gus) report back very positively...good luck with it Lexi if u decide to have it.
Gary .. how much levodopa were u taking prior to dbS and was that the cause of your dyskenesia which seems to have been(in addition to freezing ) the worst symptoms for you ?
I wonder whether DBS is regarded as a late -stage treatment, thtas certainly the impression i have got from my specialist and from the web? And it seems to me that the benefits are big and they dont ( I think) wear off with time(tho' the op is relatively new) unlike drugs which become less effective as time progresses , furthermore you can turn off the DBS device if you want (ie it is reversible). Gary mentioned that he is working again (as a bricklayer which is a hard physical job.. tho' not sure how many days) All this makes me wonder why we are advised to wait till as my neuro said 'the drugs options are exhausted' , does it not make sense to have DBS earlier and enjoy the benefits for longer rather than later waiting until things are really bad?
Does anybody understand why this is not the case?
Andy (aka Ojalahey)
Gaz 1403
hi there I have just had DBS and was wondering how you got on with the dreaded DVLA. Did you just have to inform them or what
alanj
sorry to butt in ,when i had dbs ,the hospital informed them ,so i just left it until my 3yr driving licence was due again ,but please let your insurance know ,it does not affect your policy.
how you finding it ,has any of your symptoms improved yet . alanj
no not yet as they only turned it on last Friday,and then only .5 what ever that represents.
ok let me know how you get on
Hi Andy - sorry for the delay in responding.
I was taking 6 doses (3 hourly) of 150mg/37.5mg/200mg Stalevo per day - (also with the occasional 100mg Madopar dispersible thrown in if needed) before I had the DBS installed.
I am now taking 7 doses (2.5 hourly) of 125mg/31.25mg/200mg Stalevo per day - my neuro suggested a smaller dose but more often due to my moods still being somewhat up & down. I have dispensed with the Madopar now.
As I said, the DBS (GPi version) that I had was to stop my dyskenesias which were being caused by my high intake of levodopa
I am also still on 1 x 100mg Amantadine per day although I would have thought I could give this up as my DBS is doing the same job but my neuro was reluctant to change my meds too much.
Also, 1mg Rasagaline still every day.
Regarding work, I have only managed the odd 3 or 4 day week as I have to rely on lifts as I still haven't yet got my licence back after the DVLA revoked it in September 2014 when I applied for my next 3 year licence despite having passed an Experienced Driver Assessment which I had paid for myself before applying.
Eventually, after much toing & froing, I was due to undergo a DVLA-paid assessment but, unfortunately, the date I was given was 1 week before DBS and, after consulting both the DVLA and the assessment centre, was advised to re-apply for my licence after the six week period following DBS. This I did, thinking they would give me another assessment date straight away, but no, I had to start the entire process from the beginning!! And, as usual, there are massive delays while waiting for the questionnaires to be returned/processed - they admit they are about 10 weeks behind.
So, almost 18 months down the line, I am still waiting....and all the time I know I am more capable than many other "drivers" I see on the roads!! On reflection, I wish that I had taken the assessment that I was originally given - I would advise others to think again before cancelling an appointment.
Best wishes to all
Gary
I found just the opposite. I had dbs in June and although my dyskinesia and twitches have gone I am now virtually unable to walk and my speech is terrible. Everyone says I look so much better but I am so frustrated.
Hi Bovril,
I'm not an professional in these matters, but I had DBS installed in July. What was the target area, was it the STN? Have you been able to reduce your consumption of meds? What make of kit did you have installed? Has the hospital spoken about changing your settings/program?
Sorry for so many questions I'm looking for any common ground so to speak.
Regards,
Tractorman.
Dear Fen TIger
Very sorry to hear - and very interested as I am one of a small group here in Herefordshire concerned about DBS resulting in a reduced quality of life due to stiffness and dystonia in limbs (left arm especially) for a few of us. Please can you tell us more and perhaps we can start a journey to get to the bottom of it and find out what’s going wrong and what warnings should be given to people considering DBS.
Our experience is with Boston Scientific with surgery in Bristol for tremors and dyskinesia.
Hi
I did have DBS November 2016 at Queens Square - surgeon Jonathan Hyam implanted the rechargeable Boston Scientific battery and it changed my life - no more rigidity, freezing, falling, insomnia or constipation - my speech is louder and clearer, my face has expression and like Gary have since encountered life experiences that would not have happened without the surgery. I could not recommend it more highly. The after care has also been good - not that I have had any real issues but the DBS nurses always ring you back usually the same day to answer any queries. Otherwise i see my consultant every 6-9 months.
Three of us from around this area had it done around the same time - two of us were successful - but the third was not so lucky - still big tremor and he has been back several times to the National.
Tilly2 you mention left sided problems with the Boston Scientific battery type of DBS. Which side is the stimulator tip placed and is that the side it is inserted from? Also which side is the stimulation battery? I would expect all three to be on the same side but I am no expert in DBS. Good to hear about the recently set up of patient led advice group in Hereford. It is important that we/you collate and report the evidence (numbers) to support what you/we say. This forum will be a good place to discuss, develop and collate such data and research to help our surgeons and physicians. Well done this is a good start.
Chris Frith
Chairman
Hereford & District Branch
Hi Fen_Tiger,
I’m like you, having DBS done in August 2015 for a right hand tremor, my voice is awful and I sound drunk most of the time (if only!). It’s such a strain talking. I’m freezing and tottering more than I ever used to, which is frightening.
No doubt the DBS has helped but it seems to have brought other problems with it.
Jackie