Hi all, my father has had PD for approx 13 years, he is in his 70's now. He suffers with very violent shaking all the time, day and night which prevents him (or us) sleeping. The specialist is very good and because dad has lost about 8 1/2 stone in last 12 months, his medication has been altered a few times to fit with his weight etc. However nothing is stopping this very bad shaking. He has also undergone lots of tests as the weight fell off rather quickly and they were concerned but everything comes back clear. The violent shaking is the factor to why the weight has dropped of so quickly they think. The shaking is there all the time - before he takes tablets, after he takes tablets, every time he eats something or drinks something, it just doesn't ease off at all. I used to work in care in the community and have witnessed PD before but I've never seen anything like this just wondering if anyone can suggest anything else we might try to help ease things for him or anything anyone else has found that helps even a little bit. Thank you
Primrose
how awful to watch your father like this and how awful for him. I shake when medication is wearing off and the only thing that gets it under control is more levadopa. Some people need a dose 2-3 hourly to keep their symptoms controlled but as you say taking the meds don't seem to make a difference to him.
Accupuncture also helped me too while propanolol helped my friend. You seem happy with your neuro just wondered if another medic would see things with a different perspective.
as your nero suggested other treatments at all !
Hi I have had PD for 10 years and have never shaken so much as I am nowadays. My afternoons are the worst from about 1.30 II shake on and off all the time wiih very little rest.
It was discovered that i have a vit b12 deficiency and also vit d deficiency i am on b12 injections and vit d capsules.
i feel very sorry for yr dad
how old are you wye123 ,have you consired dbs
Hi Gus
I am 63 and the thought of dbs frightens the life out of me.
hi wye123 ,i was really scared of dbs, frenchay hospital,soon they will move to southmead new hospital bristol do the operation with you totally a sleep ,changed my life ! give them a ring or look them up on the net.
Primrose,
I was taking 6 Sinemet Plus (600mg) per day and found that as the dose rose then so my shaking increased.
I titrated down over a period of a month to a reduced dose of 3 per day (300mg) split into 6 half tablets
taken every three hours.
I found that less Sinemet equals less shaking and more Sinemet equals more shaking.
My shaking is still a problem but less so than when I was on 600mg per day.
It appears that the more meds we take and the higher the dose, the greater the side effects.
Arsene
your right there arsene,but it came to a point for me where i had no choice !
Interesting reading, seems I'm getting the too high a dose shakes at the moment so I'll try the lower, more regular route for a while. I must admit I'm not very good a timing my meds in line with an empty stomach or with food, depending on which ones I'm taking.
I found this simple chart online that summed it up for me.
http://classconnection.s3.amazonaws.com/86/flashcards/468086/png/wearing_off_effect1313850917542.png
Hi all , i was diagnosed 14 years ago .Tremor was getting worse , almost constant , and i was jerking with no control of my arms and legs most days . A year ago i had DBS , and although it has taken a full 12 months to recover the results are amazing . No more tremor or jerking . Although it isn't suitable for everyone it is worth considering .XXsmiler
hi. i had dbs 2 yrs 6 months great ,the only thing is my walking not to great,its a bit of a trade off ! shaking,tremors & dyskinsia or my walking. took nearly 2yrs to find right meds & settings so i would say to people stick it out comes good in the end ! smiler where did you have your opp.
hi gus , i do get a lot of pain in my legs which affects my walking, i am hoping my meds can be adjusted to help this. i had my operation at the queen elizabeth in birmingham, they were fantastic .
mine at frenchay bristol totally asleep for the whole opp!
me too don't think i would have coped if i had been awake
dont why some hospitals do it why your awake still ! no chance me