dbs?: I have all the symptoms except a... - Cure Parkinson's

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dbs?

michaela13 profile image
10 Replies

I have all the symptoms except a resting tremor. Diagnosed March 2011. Take 11/2 sinenet every 3 hours 6x a day. Med still works if I'm careful with meals. But still have off periods and diskinesia. Nights are becoming a horror as I have to pee every 2 hours and its getting harder and harder to move. i am considering DBS. Any opinions? Anyone have dbs without resting tremor?

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michaela13
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10 Replies
Bailey_Texas profile image
Bailey_Texas

Good morning michaela13

Having to pee every 2 hours may not be PD related have a check up and find out what is the cause of it.

Seems to me too early for DBS. I would try some additional meds like Requip or something similar.

Some stats would help

what type of sinenet do you take 25/100?

age

exercise you do

any other health problems

michaela13 profile image
michaela13 in reply to Bailey_Texas

I'm 64. I walk and ride a stationary bike when I feel good enough to do it. No health problems, but had breast cancer (triple negative) at the same time as the Parkinson's. Chemo and radiation.

Bailey_Texas profile image
Bailey_Texas in reply to michaela13

You are young like me i am 62. I too have no tremor. i was DX in 2005 and have my PD mostly under control. i take 1 50/200 er and

1 25/100 cl every 4 hours 1 azelect and 1 6 mg requip 1 time a day. that is a heavy dose but works for me. i too have some diskinesia in the evenings but not enough to worry about.

If you are able i suggest you increase your Exercise to the most you can possible do plus a little more. it should include weight training, stretching and aerobic exercise. Again i would find out why you need to pee so often.

Explore all types of meds.

I work out 5 or 6 days a week 1 to 1.5 hours a day.

ssnowhite profile image
ssnowhite in reply to Bailey_Texas

see a urologist

paddyfields profile image
paddyfields

Whether PD induced or for other causes urinary urgency will respond to tablets - Vesicare works for me - ask your GP. The more you go the less your bladder is able to hold - a vicious cycle. I find a course of Vesicare settles things down and then I stop taking it in the interests of decreasing the number of tabs. I am on but you are really supposed to take them all the time. I believe urinary problems - infrequent but devasting sudden loss of control - for which no cause was ever fond was one of the first symptoms of my PD.

michaela13 profile image
michaela13

Thanks paddyfields .

movinngroovin profile image
movinngroovin

Love my DBS - at the gym everyday! No meds at all!!

joe45 profile image
joe45

Hi Michaela 13, long time since we spoken , Im keeping u up to date with my condition , I recently had been in hospital for tests for a second opinion and the diagnosis I got not 100% , but they've said it's not yr typical parkinsons its Parkinisom /msa + cervical tortecollis !

etterus profile image
etterus

There are two basic types of PD . Tremor type and PIGD-postural instability,gait disorder. PIGD is only about 20% of the total population. It also has more nonmotor symptoms such as autonomic dysfunction and psycho/mental degradation. Urinegency is a good example of autonomic symptoms.

I had DBS 18 months ago and it was very successful but not a cure. I'm still having to pee at night but I don't crawl to the bathroom and it's much less threatening. My foot dystonia is also a lot better. However it is still a progressive disease.

The evidence that I have is that the best electrode placement site for PIGD is the Globus pallidus internus due to the psychological issues. The subthalamic nucleas, the more common site, has greater psychological problems.

I agree that exercise is very important to all of us. I find a recumbent trike ride to be the best for me. The challenge is to find exercise that you enjoy.... otherwise it's likely fail.

ssnowhite profile image
ssnowhite

what is 11/2 sometimes the less is better try using a method to deal some other distration to keep yor mind clear with other drugs

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