Hi there, I was DX 12 years ago and i’m really not seeing much benefit from the drugs these days. I can go days without any on time now. I find myself topping forward and my posture is really bad I start to think this is normal me and then I’ll have a period when the drugs work and I find I can stay upright and I’m not tipping forward.
Life seems to be just staggering around grabbing whatever surface I can find to dtop falling over or sitting in a chair. Each time I want to go to the toilet takes me about an hour to get there.
I’m only just 52 years old this can’t be at surely. If I talk to my consultant, he says I’m as much is I can have without suffering the side-effects. I’m too chicken to consider DBS or anything invasive anyone I have any words of wisdom .
Hi Lainer
I think I’ll be in the same way before too long. And I don’t think I could cope with DBS.
There’s a few devices I keep reading about - such as A Non-Invasive Wearable Device for People with Parkinson’s (charconeurotech.com)
I’ve put my name on the waiting list for this when it’s available, but I don’t think we can spare £300 just now. I’m hoping it might be available on the NHS eventually.
Also, there’s currently a phase 2 clinical trial on non-invasive spinal stimulation which looks hopeful -
Non-invasive spinal cord stimulation in Parkinson’s disease | VJNeurology
@Lemon thanks for these. Just looking at the first one at the moment…besides the information from the makers I’m struggling to find reviews etc. There is also nothing on this forum OR Parkinson’s uk isn’t that a concern?
Yes, and I think the potential improvement seems quite small compared with DBS, but I imagine there’s not much risk involved, other than loss of £.
I put a couple of other projects/products on this thread - Vibration research - Research / Research discussion - Parkinson’s UK Forum (parkinsons.org.uk)
One is about a vibrating glove which ‘rewires the brain’ (maybe), and I already have bought a similar device which I use for a couple of hours each evening (while watching TV). It has won some awards in China and I was contacted by the designer after leaving a good review with some suggestions. Amazon reduced it to £20 so I bought a spare one. Seems not to have caught on.
Hi Lemon, I am quite interested in the glove as my tremors have become quite bad and the medications are no longer having any effect. (I have tried three different ones to date) - - Have you seen much improvement?
Just wanted to offer my sympathies @Lainer - sorry I can’t offer any advice. 
To be honest your post scares me. I am the same age as you now but was diagnosed only 2.5 years ago. To think I might be “staggering around grabbing whatever surface I can find” at age 62 (keeping to your timescales) frightens me.
What is putting you off DBS?
hI Not sure about words of wisdom but words from experience. At the time I got diagnosed, I was probably like you are now and the drugs gave me a life back. That was 17 years ago. Its ok for your doc to say you have reached your limit but he isnt living your life. Side effects happen - fact but if you are aware of what might be - side effects might not happen - you can deal with them. Surely having balance and movement back is worth trying more drugs/new drugs? Ive reached upper limits on meds but wont consider dbs - for me the negatives outweigh the positives but that might change! Its ok to challenge the medical profession - do your homework and you might find a regime of meds that suit you. Good luck
Sorry @Pcyc i didn’t mean to scare you. Sometimes it’s easy to lose perspective with a degenerative condition. I had a bad few days and I got worn down with the fight, not knowing if I could stomach years like this let alone getting worse.
But I’m back in my normal headspace now. Yes I’ve been staggering around and it’s been awful but yes I’ve been a bit undisciplined with my balance exercises recently so yes I can shoulder some blame. The horrid days ca be awful but I was just looking to get the unique motivation only a fellow PWP can offer a combination of
“There there kid it can be horrid, we all have bad times”
And
“Come on lady, stop feeling sorry for yourself and man up”
So here I am Pcyc back in the room apologising for my nagative vibes xx
@Breeze thank you, I think I was mostly mad at me I felt defeated and worse it was my fault. I went to my Consultant appointment laden with information on taking my tablets whe they worked when I had offs and symptoms etc and he wasn’t interested.
He is an excellent person and we have known each other a long time but I found I was back outside having not got any thing I wanted to discuss AGAIN!
I then received copy of the letter from consultant to GP saying he saw me with my carer (I don’t have a carer, it was my partner who doesn’t do caring and is out the house 09.00 to 16.00), I’m doing well in the meds (I told him I wanted him to review because they’re not doing much enabling), no recent falls (he didn’t ask and I’ve had 3) and no noticeable worsening (then why do I spend so much time rooted to the spot)
Today I’m going to man up and write to consultant, GP and PD nurse and ask for a plan for looking at new regime
So thank you Breeze you may not have felt you gave words of wisdom but you gave the words I needed to motivate me
Im glad I could help. Over the years I have had to work really hard at getting the medical profession to fully understand what is going on with me - sometimes I dont even know myself. I have kept excel spreadsheets/diaries so the problems/fluctuations/results can be seen clearly - I go see my consultant once a year. A lot can happen in a year. So I write a letter to the consultant, to take with me, so that they can read the score, instead of me trying to dredge my befuddled mind, taking up precious minutes. PD is a very individual illness so really, in my opinion, the only person that can fight your corner is you . If you know somethings not right - try to sort it out. It doesnt always end up with a success story but at least you know you have tried - from that can maybe come a different line of thinking - with a success story attached. Quoting from Delboy " He who dares wins!!"
Hi @Lainer there is no need to apologise, really. You said how you feel, nothing wrong with that and that’s partly why this forum exists. I am glad you are back to “normal” now. I was having a bad couple of days; I still am. I have been dozing on the sofa during the day recently like a 92 year old (I’m 52) thinking “why me?” I just need to snap out of it and get on with life…I only get one. 
Cheers
I don’t think it’s unhealthy in having a “why me”moment every now and then, in fact combine it with a good cry and you have the perfect pick-me-up. Always feel like i I start with a clean sheet and the strength to conquer anything after
Hi Lainer
I find your post really concerning, just wondering if you have a good specialist nurse you can talk to.
There are other options as you approach the maximum dopamine dosage although we are all different and there are no hard and fast rules with this either as our brilliant consultant says. We all try to work towards the optimum level of drug therapy. Also just wondering if now is the time to think about using a rollator if you don’t already to help prevent falls.
I recommend to you and to all pwp you look on You Tube for "Toms top ten tips for living with Parkinsons" Tom was a true inspiration and was the founder member of “Cure Parkinsons” A Parkinsons research charity that often collaborates with Parkinsons UK, Michael J Fox and others in funding research. Lemon, if you haven’t already looked at this you might find it of interest.
Hi Lainer, I am in a similar state to you having had my first PD symptoms in 2010. I took myself off meds completely a couple of years ago, preferring to use Mucuna Pruriens as my source of Ldopa that is comparatively free of side effects. I have to concentrate full time to avoid falling over, using my eyes for balance awareness. I find that, even in the middle of the night, I can remain upright if there is a tiny spot of light somewhere in the room that I can concentrate on. And I do 20-30 mins of Pilates every morning to help with balance and muscle control. As long as I don’t step backwards I can shuffle around with a fair degree of confidence. I also do Nordic Walking. I can maintain a respectable rate of about 3.5mph for 2-4 miles. The nordic walking sticks give me effectively firm contact with the ground at all times. It’s a balancing act that a circus acrobat would be proud of! The Pilates exercises really help to develop balance awareness and muscle control. I know that I am fighting a losing battle but I give myself a pat on the back every time I survive a midnight visit to the loo without crashing into anything. Practicing the art of staying upright in almost total darkness seems to compensate for innate balance adjustments that I can no longer rely on. Hope this helps!!! JCPB
Thanks for your suggestions, I will have a look at the information you have suggested
The problem I have with all walking aids is twofold
- if my legs are in a state that would benefit from them my body is invariably in that place where I can’t walk if there is anything in my hands
- my most occurring “off” walk is when the step length decreases and I end up taking shorter and shorter steps (think being forced towards a cliff edge) until I can’t take any more steps (think toes on cliffs edge) and my body this over my stationary legs and goes over the cliffs edge
I’ll look at your other comments and report back. Thanks xx
Your midnight pat on the back has reminded me to add that bizarrely whatever times I get up in the night (usually at least twice) and when I get up (usually about 04.00) I’m always “on” regardless of what the previous or forthcoming days are like
I thought I’d heard it was hard to get a consistent level of L-dopa using Mucuna?
Please consider DBS. l was diagnosed in 2005 at the age of 54 although, looking back the first signs were apparent in 1999. l was advised by my neurologist not to go on Levadopa for as long as possible so that, as the disease progressed, the medication would last longer if that makes sense ie levadopa is most effective for 5 years so if l waited 5 years and then went on Levadopa l would be covered for 10 years. Anyway as it happened l saw a neurologist in the USA and he advised that l go on Levadopa straightaway. That was in 2007. l did so and, initially it wasn’t very effective but a friend who is a neurosurgeon told me to double the dose. l did and, within a week, l felt like Superman.This lasted until 2013 when l began to freeze. l had DBS in 2014 and it gave me my life back. lt was carried out under the supervision of Dr Patricia Limousin at the National Hopspital of Neurology and Neurosurgery in Queens Square in London. They were and still are brilliant. The operation was a doddle They have been doing it for years and are extremely good. l recommend that you ask your GP to refer you to Limousin for an assessment asap. ln the meantime , if you’re on Levadopa, double the dose. As one comment says, it’s not certain you will suffer side efects.
@TimA
DBS scares me!
I’m currently taking 10 off 50/62.5mg levodopa each day plus 100mg controlled release plus advice dispersible, aswell as 16mg Neupro and 200mg of Amantadine, are you sure about doubling to 20 tablets?
No, l’m not sure about doubling to 20 tablets! Speak to Limousin about it and also about DBS - you’re not committing to anything.