Hi there fellow parkinsonians !! i was first diagnosed with parkinsons when i was 32 im now at the ripe ole age of 50.......my medication at the moment is Stalevo which has levodopa 100mg/carbidopa 25mg/entacapone 200mg 8 times a day plus half a Sinemet 10mg/100mg also 8 times a day.......had a Pallidotomy (hole in the head) brain operation some 10 years ago to delay my PD ........ was wondering how other parkinsonians with a similar timeline to mine are coping ?? some better ?? or worse ??
hi ya welcome to the forum,im ali im 42 now and ive been dx for 11 years
lots of surport on puk,and many frineds to makei would like to no about ,(hole in the head)is this the same as deep brain stimulation operation?or some thing elseif some thing else could you tell use wot it is ,and alittle more about it if you dont mind pleasewith my pd,i have frequant fall,freezing eposides,stiffness,i walk with too sticks,and use a chair for longer distance or if bad day i have it for short distance,but i do have back probs,so i guess that could be related more to that,not just my legs givin up on me and hips hurtinhow are you with in ur self havin it for 18 years?we all are so different from one another ,i found this out when ive been to pd group,and puk meetinganyway its lovley to have u on board with us,and i will see you around the forum
lots of surport on puk,and many frineds to makei would like to no about ,(hole in the head)is this the same as deep brain stimulation operation?or some thing elseif some thing else could you tell use wot it is ,and alittle more about it if you dont mind pleasewith my pd,i have frequant fall,freezing eposides,stiffness,i walk with too sticks,and use a chair for longer distance or if bad day i have it for short distance,but i do have back probs,so i guess that could be related more to that,not just my legs givin up on me and hips hurtinhow are you with in ur self havin it for 18 years?we all are so different from one another ,i found this out when ive been to pd group,and puk meetinganyway its lovley to have u on board with us,and i will see you around the forum
Hi Both,
My husband was diagnosed at39yrs and the first 4yrs were quite good and then the honeymoon was over as he started having extreme dyskinesia and had the pallidotomy when he was 50yrs in 1997 When he had his, he was awake all the time in order for the surgeon to ask him to do certain movements with his fingers.He was fitted with a metal frame screwed to the head and after the surgeon checking many different measurements and a local anaesthetic they drill a hole and use a probe to cause a lesion, but as far as I am aware they has stopped doing this op and do the subthamlic(if that's the right spelling) deep brain stimulation one. For him it was really great as he was relived of this difficult symptom and could sleep for around 5-6hours at night instead of 3-4. No more sitting on the floor he could sit in a chair and travel in the car without having to stop all the time.
After that he went on the apo pump for the next 15yrs and had to come of that because of paranoia and what was called dopamine dysregulation syndrome which includes hypersexuality,punding(which is a term used to describe the human activity characterised by compulsive fascination with and performance of repetitive mechanical tasks such as assembling and disassembling,collecting,or sorting household objects) he used to sort his photos out and put them back in a mess and do it all again, his room was worse than any teenagers not that that mattered but you could never find anything.We had a speaker at the branch who is a pharmacist and he got some good information from the web site wikipedia called dopaminergic pathways which everyone felt was so easy to understand and explained so many things, I suggest you look it up and you will then understand why.
He is now 68yrs and will have had pd 30yrs in August, although he has had to go into a home now he is able to go to college twice a week and fishing in the summer months, the home also has many activities and many outings in the better weather.
As I explained before he had a very full life and enjoyed all his hobbies until recently and still does all be it in the home where he has one to one care.
He is on a lot of drugs still but without them he would not have any life just stuck shaking in bed all the time.I hope that help you a little.
best wishes
vivian
My husband was diagnosed at39yrs and the first 4yrs were quite good and then the honeymoon was over as he started having extreme dyskinesia and had the pallidotomy when he was 50yrs in 1997 When he had his, he was awake all the time in order for the surgeon to ask him to do certain movements with his fingers.He was fitted with a metal frame screwed to the head and after the surgeon checking many different measurements and a local anaesthetic they drill a hole and use a probe to cause a lesion, but as far as I am aware they has stopped doing this op and do the subthamlic(if that's the right spelling) deep brain stimulation one. For him it was really great as he was relived of this difficult symptom and could sleep for around 5-6hours at night instead of 3-4. No more sitting on the floor he could sit in a chair and travel in the car without having to stop all the time.
After that he went on the apo pump for the next 15yrs and had to come of that because of paranoia and what was called dopamine dysregulation syndrome which includes hypersexuality,punding(which is a term used to describe the human activity characterised by compulsive fascination with and performance of repetitive mechanical tasks such as assembling and disassembling,collecting,or sorting household objects) he used to sort his photos out and put them back in a mess and do it all again, his room was worse than any teenagers not that that mattered but you could never find anything.We had a speaker at the branch who is a pharmacist and he got some good information from the web site wikipedia called dopaminergic pathways which everyone felt was so easy to understand and explained so many things, I suggest you look it up and you will then understand why.
He is now 68yrs and will have had pd 30yrs in August, although he has had to go into a home now he is able to go to college twice a week and fishing in the summer months, the home also has many activities and many outings in the better weather.
As I explained before he had a very full life and enjoyed all his hobbies until recently and still does all be it in the home where he has one to one care.
He is on a lot of drugs still but without them he would not have any life just stuck shaking in bed all the time.I hope that help you a little.
best wishes
vivian
thanks vivian and ali for taking the time to reply, most appreciated, theres a video of the pallidotomy on youtube ali, dont think any links work on this site but ill post it here incase http://www.youtube.com/watch?v=7bEKQGYHzrc maybe if you just search for pallidotomy on youtube its the first 2 videos of fred. and yes vivian i believe they have stopped this particular operation now, guess we were guinea pigs lol well such is life, stay safe both, please keep in touch ((hugs))
The link works fine from here, WB.
thankyou very much for the link,its intresting how it all works,scarey though,x