New Here


#1

Hi there. My Dad has been diagnosed with Parkinson’s for about 6 years. I’m thinking about asking him if he will consider dbs… he is anti doctors and anti hospitals and has been all his life! He was such a strong man and is still so proud and it upsets me having to ‘interfere’ …


#2

I suppose I am hoping someone can give me some idea of how dbs has affected their lives.


#3

Hi Naomie, I’ve been diagnosed for 8yrs now and am a pig headed,proud, hospital hating, doctor loathing 60yr old bloke lol! Your dad’s lucky to have a daughter as I have a daughter whose very loving and stubborn & nags me to death about seeing doctors but makes sure she doesn’t over do it. I don’t know how I’d of survived without her. Dad’s take more notice of their daughters because they hate seeing them upset. I found it hard to accept help to but with my daughter’s gentle stubborn persuasion I got diagnosed & eventually even had the DBS op which has given back a lot of what PD took away! My daughter was with me every one of the three days I was in hospital, I couldn’t have done it without her support. The op itself wasn’t painful at all, I was awake for the drilling bit which was weird but ok and the second part where the battery is fitted I didn’t know about as I was under general anesthetic.The only bad bit was the frame being fitted for positioning of the drilling which in my case done in a rush because of theatre slot which really hurt till the local anesthetic kicked in. Just be stubborn and give him the support and gentle but firm coaxing he needs I found it works wonders!


#4

Hi Nufcash
Thanks so much for your lovely response. It gives me hope but I’m still going to have a job persuading him to consider it! Back when he was first diagnosed he flat out said he wouldn’t have the dbs. He’s 71 and I think he’s almost ‘waiting to die’ as horrible as that sounds! He watches tv all day and doesn’t want to go out as he’s very self conscious about his tremor and pretty wobbly. I think that if the dbs gave him even 5 good years where the symptoms were much improved it could make such a difference and change his life again, go on holidays etc and enjoy doing the things he used to.
You’re very brave having the dbs being anti doctor/hospital! And your daughter sounds fantastic! It’s hard having that role reversal almost and having to tell your parents what to do rather than the other way round!! Can I ask if you had the dbs privately or on nhs ? From what I read you have to be very bad before the nhs would refer you? I have seen figures of £20-35k bandied around do you reckon this is accurate? If he uses the cost to get out of it I’m saying I’m going to pay for it!
What would you say the dbs did for you… was it a total game changer or just symptoms improved somewhat? I guess there’s no way to tell how much improvement until you do it!
Thanks again!


#5

Hi again Naomie, I can understand him totally PD knocks your self confidence for six! I had a mate from work who had a brain tumour & its horrible to think that in my really bad days I thought he’s been given a death sentence but I’ve been given a life sentence of suffering & thought at least he won’t be suffering as long as me. As I say that was in my worse days when I didn’t want to go out and have people staring at me (well I thought they were but they probably weren’t lol) when I was shuffling along like an old man of ninety. Does your dad have any mates who could come round and have a chat and maybe take him out? Do you have support from friends or family? It can make a lot of difference to both you and him. I had my DBS done on the NHS at St Georges Tooting after an assessment which involves movement & memory tests. I’m not sure which area you live but you should be ok to get it done on the NHS. DBS isn’t a cure but cuts out a lot of medication & for me has enabled me to get out and about doing things I wasn’t able to before and I now am so much more confident. There was an Italian gentleman who also had DBS the same day as me whose tremor was so severe he couldn’t hold a cup of water without it spilling everywhere & after there was no tremor and he and his wife were so happy. The next time he sees his neurologist go with him if possible and ask him or her about DBS so your dad can weigh up the pros and cons. It will be up to him to decide, but he needs to feel in control which is difficult with PD. The question I asked myself was do I want to be stuck in relying on others & being bored to death with no life? I think you know what my answer was lol! I won’t lie, there will be a lot of arguing and tears but as long as he can see how much you love him & he can see you ain’t gonna give up because you know he’s as strong inside as he ever was I think he wiil start to llisten.


#6

Hi Naomie, I also have had the DBS fitted(mine is the St Jude system there is also Medtronic and Boston Scientific) in fact I am having the battery changed soon as it has been coming up four and a half years since it was fitted(the life of the battery should last for five years). The difference with me is that in addition to the Parkinsons tremor I also have a Dystonic tremor which the Consultant wouldn’t recognise until after the operation. Life is better with DBS and I play Flat Green Bowls and Ten Pin Bowling, it has given me a fresh outlook on life. I give the same advice to everyone I speak to and that is to be positive and face Parkinsons down like you would anything that life throws at you.

Les