DBS or NOT , please help me make up my mind!


#1
As usual, i am not sure why I am writing this, I am not sure if it is out of fear, or because I need support and I frightened to ask or maybe because I just need to get it off my chest, or maybe all of them.
So here goes, let me apologies up front form my appalling grammar and spelling, sadly not all down to Parkinson’s, but hey it gets the blame for everything else that I do wrong. So one more wont natter..lol
Yesterday, I went to see the specialist, I haven’t seen this chap for over 2 years- And I was pleased and amazed that he remembered me. He asked me the standard questions, he did the wrist wriggle and I did the walk and turn things that we are all used to, we disgust the drugs and the fact that they do not have the effect that they should have on me- We spoke about my lack of speaking, my stuttering and my slurring that have got a lot worse since I have been on Apomorphine, to the extent that I am almost a recluse because nobody can understand me
Then out of nowhere, he said that he thought me to be a prime candidate for brain surgery.
He then went on to explain how DBS works and how and why he thought that I would benefit from it. The main reason was my age, he has estimated that I started with this in my very early forties, and as I am still very YOUNG yes that what he said…..very
I go back to see him next –Wednesday, when I have to give him an answer…………….
So that is my dilemma, I have spoken to my youngest son who has seen me getting worse over the past 6 months and to the wife of the son that will not talk to me. They both think that it is a hard decision to make but as I am deteriorating and if I can get a better quality of life then they think I should go for it. Just being able to have a conversation again would be so worthwhile…however, since I am claustrophobic, the operation could be a bit of an ordeal.

So there you have it, your comments and advice would be appreciated….

Jaylew..

#2
hi jaylew nice to see u :smile:i will make this short cus we spoke yesturday ,but thought i would give my opion on the forum for u as well:smile:it is a shock jaylew as u no ,as to me it would be like some one sayin u have pd tome all over agin,i saw the documentry on dbs last year and to be honest it put the wind up me ,but when i saw the results of the man and lady who recived it i was gob smacked,i thought noway could this happinin ,why carnt we all have it.as u no we carnt all have it ,but i no a man at my pd group i found out few weeks back that he has had it also ,he always used to sit at the back of the lecturer room and i always thought he was acarer of some ones,but no stick no walkin aids and walks normal,if there is a normal lol.but anyway jaylew im ramblin agin ,if it was me i would be if in about things like u ,i would wont to no as much things as i could about it ,from pd nurse,neuro ,anyone u no whos had it ,and when ur satisfieied with ur heart and mind ,its ur desion jaylew,i no wot i would do seein the bloke at my group x:smile:wish u well xhugs x:smile:

#3
You sound more worried about claustrophobia than you do the operation.

They can easily give you your anaesthetic in hospital, then carry out the procedure in the middle of Salisbury plain before taking you back to your comfy bed back at the hospital.

Look at DBS like it will enable you to walk away from small spaces.

I suffer from Spheksophobia - a fear of wasps.

I want DBS so I can get back to swinging my newspaper the way I used to, if nothing else.

I once saw a pair of swats for kids for sale, they had sliders on the handles for marking the score from 1 to 10. First to reach 10 being the winner.

What that last sentence has to do with anything I don't know, so don't ask.

#4
Hi Jaylew ,What a wonderful opertunity you have been given ,put your fears behind you and go for it, like a lot of people i saw it on tv it doesnt look any worse than going to the dentist, get your life back and enjoy , if im ever given the chance i"ll jump at it, but im not you ,think long & hard about it and the benefits, good luck PP

#5
try asking yourself the opposite question - how much will i regret not doing it once the opportunity has passed?

#6
Hi Jaylew,

I think you went to the PD Junction week-end at Coventry and a chap, I think called Matthew - chairman of the young PD group of Parkinsons UK. Anyway he gave a talk there which you might remember. He was about 50 and seemed to have gained a great deal from DBS. So you might be able to contact him via PD Junction.

#7
Hi Jaylew,

It is nearly 12 months ago at the end of August that I underwent DBS in Australia. I am now 50 and was diagnosed at 41. I had reached the end of available treatment options as I could not take DA's due to OCD's (specifically gambling) and I was taking 200mg Stalevo evry 3 hours, the effects of which only lasted 1 hour, and a Sinemet CR 250mg at night. My sleep quality was shocking averaging 3-4 hours per night. My neuro said that I was an ideal candidate for DBS due my age and relative health otherwise. I was also only working 1/2 days for the previous 12 months and was possibly looking at early retirement. Something I wasn't ready for. I was referred to the DBS Neuro and Neurosurgeon in Sydney and they confirmed what my neuro said. I decided to go ahead and have not regretted it. I am now working full time and my neuro said that he would expect me to continue for at least another 10 years. I am now taking 50mg Sinemet 2-3 times a day! I sleep around 7 hours straight on weekdays and 8-9 on weekends. Whilst it has addressed nearly all of my symptoms, be aware that it can adversely affect your speech. This, for me, has been a small sacrifice, to regain better control of my symptoms and my life. As far as being claustrophobic, if you can handle an MRI scan of your head, DBS is a breeze. The staff involved were very supportive and helpful.

My only concern for you though is, you seem to be pressured into making a decision fairly quickly and although it was easy for me to say yes, don't feel pressured into making a decision without considering everything. There is also a psychological apsect as well that must be considered, and if you have a carer/spouse, it's impact on them must also count. This didn't apply to me, but I have heard relationships can become strained when the patient suddenly becomes independant again, amost overnight, and things have changed and can become difficult for the carer/spouse to cope with.

I don't want to scare you off, but these are some of the aspects that should come into consideration when deciding to undergo DBS.

Sorry for the long reply, but I am very passionate about DBS, and I hope I have assisted you in coming to a decision.:grin:

Regards,


Andy

#8
Andy
DBS seems to do a lot for movement etc, does it do anything for the mental side - alertness, cognition, articulation etc?
t

#9
Hi Turnip,

DBS appears, in my case, to mainly address any of the symptoms that can be controlled by medication. For me, that is rigidity, tremor, gait etc. Whilst I am sleeping much better, there are days when I still feel really tired. Maybe having to get up at 5am every morning for a 2 hour train trip to work doesn't help, and then the same after work. I feel I am thinking a lot more clearly than I was pre-op. Decision making was a big deal prior, now I am able to react more positively to make decisions. It's affect on my speech which is the biggest let down, to the point where I am now thinking of seeing a speech therapist. It seems to get worse as the day progresses and appears to be linked to increased tiredness/fatigue.

Regards,

Andy

#10
Hi

I have a friend that has recently had DBS and she hasn't looked back. It is amazing what she can do now as to what she could pre-operation. Her operation was done entirely under anaesthatic - I think she might have had some brain scans to cope with but such a small price to pay. I am surprised at the speed at which you need to make a decision - there is normally a long build up to making a decision.

If you feel it would help - please send me a pm with your phone number on it and I will pass it on to my friend who I am sure will gladly talk to you.

Breeze

#11
apologies if this has been posted already
http://www.michaeljfox.org/newsEvents_parkinsonsInTheNews_article.cfm?ID=707

its about long term benefits of dbs.