My nights are getting pretty bad now. Do you guys take medicine throughout the nighttime? It would be okay if i didn't have to pee every 2 hours. Also, i have no tremor but I do have wearing off, freezing up, swallowing issues, balance problems, speech issues, can hardly walk when off the med. Does dbs help these problems? Has anyone had it who doesn't have tremor?

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  • A slow release sinemet before bed helps my husband stay mobile enough to not stiffen up and to turn over without too much trouble.

  • Same as Soup said . Sinemet CR at night seems to help . Dome people also tank a low dose Amitriptyline which can help the restless legs .

    have you thought about using a convene with bag attached at night to save getting in and out of bed . When sitting down at night . Keep your legs raises . it's when you lay flat the the urine goes into the bladder and needs emptying , Might help get rid of some before you go to bed that way . it's worth trying .

    I asked the GP about having to get my husband out of bed to toilet all night and he suggested the convenes worked a treat

  • I, too, was taking melds every two hours around the clock. I have found Rytary to be a great help. I take them every five hours. Being able to sleep has made a huge improvement to my general health as well as the PD symptoms. I had DBS in the globes pallidus internal area. This site helps with a lot of the non motor symptoms and does not have the negative affect on speech and intellectual function". However, it does not relieve the need for high doses of carbidopa levodopa. These choices are difficult to make, but there are choices. Just when it seems that I am running out of options, something comes along to help. Sometimes another professional opinion can add something to your arsenal of treatments. More often folks like this group offer helpful ideas. I will be thinking of you as you seek your next step.

  • Thank you for your help.

  • I also take cr(Time released) sinement, This helps for the night time, I can't say enough good about DBS, it gave me my life back. However it is a long road with surgery and adjustments. Plus are expectations can cause us not to realize it takes a while to get the adjustments correct etc. I cut back in liquids by 6 p.m or 7 p.m. that helps also not napping during the day, sometime bathroom in the night becomes a habit we train our selves to do, I finally sleep all night 9 to 5 , I used to say sleep with Parkinson was optionally LOL Good luck & GOD BLESS!

  • I just want to help, but if you don't like this, please disregard it. Some poeple might disapprove non meds approach.


  • TL500, thanks for posting this info! My husband after 11 years is still carrying on his life without meds but with some frustrating symptomology. Will definitely show this to him.

  • Hi answereeker,

    That's good to hear that your husband can still do without meds for (?) 11 years. Does his PD progress? and slowly? If you don't mind sharing. Thanks

  • Yes, TL500. His symptoms have progressed slowly over time in a fairly typical pattern. Started with an intermittent tremor on the left which switched to the right and then sometimes in his legs. The slowness started several years ago. Along the way he has had other non-motor issues, but being a nutritionist and wellness coach, I am always looking for what can make it better from a lifestyle perspective and simple things often do help.

    What works best for him is getting at least 7-8 hours a night sleep, MCT and Coconut oil combined with a low glycemic diet, walking, a supplement called ASEA (which improved everything related to energy), and a sense of humor and gratitude for all the good in his life. He also has learned how to meditate to reduce his tremor when it gets in the way of his doing his work on the computer.

    Stress and not attending consistently to the above make symptoms worse. We use tracking sheets for behaviors he has control over and symptoms that he is trying to have improve which is helpful to see trends and what may be working.

    PD is challenging but how you deal with it like other life challenges greatly impacts how you enjoy your life. Gratitude and love sweetens it all.

  • Thanks answerseeker. Your info is much appreciated. Did the tremor disappear on left when it switched over to right? or he has it on both sides now?

    What is MCT please?

    If you don't mind, how old did he started the symptoms and how old is he now please?

    Thanks answerseeker.

  • TL500, of course everyone's experience with PD is different. The tremor on the left side did not go away completely. Over the course of the day, the degree of tremor varies, sometimes one side is more dominant and then the other. When he is "In the Zone" and in a calm state while focused on work or TV or reading, both hands can be totally calm, as when he sleeps.

    MCT stands for Medium Chain Triglycerides that are derived from Coconut Oil and sometimes Palm Oil. You can buy it as a supplement. MCT raises ketones in the brain faster than Coconut oil but the ketones last longer from Coconut oil. When the brain uses ketones for energy, it demands less sugar and insulin levels go down. Some are calling Alzheimers and Parkinson's Diseases Type III Diabetes. Some people with PD find less symptoms when on Coconut oil/MCT and a relatively low carb diet.

    If you dd o some research and decide to try it, start low and go slow on increasing the dose. It can often causes gas and diarrhea if introduced too quickly. In many people the digestive system must adjust to handling the added fat. Also, be mindful of the added calories from fat and compensate other places in the diet (reduce carbs). On the other hand, this helped my husband stabilize his weight. Over about 18 months, he had slowly lost 15 pounds.

    Hope this is helpful! It is certainly an adventure. Become your own detective as you track changes and notice what happens. The important thing to realize is while it sometimes may seem that you are losing control over your body, whether you choose to use meds or not, you actually have more influence that you think. Let your inner light shine!

  • Thanks very much answerseeker. Your info is very helpful.

  • So good to hear someone can last 11 years without meds. I was diagnosed 2 years ago and still do not take meds nor has my doctor suggested meds. At the present time there is no cure or stopping progression of PD. At the same time those who take meds are no worse off than those that don't. For PD one takes meds to alleviate symptoms which interfere with a happy life. But I am glad, nevertheless to hear of an answerseeker who has avoided medications. Good luck to you and all of us.

  • I'm happy to know that you are not meds too. I am scared of the side effects a few people tell.

  • Hi Michelea

    It's Joe how u doing ? not so great reading yr message😔😔x that's exactly what I'm going through but not so much visiting the bathroom and swallowing and I sleep ok mostly , in still under the professor at london hospital as they think I may have parkinisom like Parkinson's but not so I'm due to have 2nd MRI scan soon to see if they can notice anything x perhaps u should've had another opinion cause everything I've read a lot of patient were misdiagnosed . 😏

  • I'm not doing too good. I'm still just taking the sinemet. Can't wait for the stem cell or that helmet that you wear that works like dbs (STIM). Everything just takes so long! I hope i can make it. Maybe i should do dbs. Have you thought about that? Anyway my dog passed away and then my mom died on July 11th. So I've been through a lot. Getting very depressed. Tryng to stay focused and positive but it's so hard#

  • So sorry to hear abt yr mum and dog x 😔 hope it gets a bit better for you in time . No that DBS looks scary!

    I know I've been feeling

    Down cause my necks causing me problems but not as depressed as u must be feeling , of course you will make it be strong x😊

    Thinking of you x

  • Thanks Joe

  • I have the neck thiing too. I think it's from the dyskinesia.

  • Hi, it's really annoying and uncomfortable , mines thru wear and tear and torn muscle so hoping to get it injected for relief .

  • I take Sinemet,but for sleep I take an extended release 10 mg Melatonin and a 1 mg Ativan, and relaxation techniques like deep breathing, I also do Kegal exercises to strengthen the bladder. Something taught to women for frequent urination but it should work on men too.

    Good Luck, Suzie

  • I have my symptoms pretty much under control, but I still get up several times a night to go to the bathroom. However, I suffer from REM Behavior Disorder: I act out my dreams. This has been scary for my wife as I have vivid dreams where I am having to defend myself a end up grabbing her or punching her. I flung myself completely out of bed a couple of times, the last time having to go to the emergency room for stitches in my head and check for concussion. My neurologist has me on clonazepam now, and aside from abating my acting out dreams, it seems to have reduced my need to go to the bathroom all night.

  • You sound like me last November. 12-08-14 I underwent DBS to the Globus pallidus internus. Since then I've had a remarkable improvement in my life. The night are the most improved. I no longer crawl to the toilet every two hours and take a c-ldopa and ambien. I still take c-l dopa every 2 hrs during the day and clonazapam when I go to sleep and one if I wake up at night.

    I had my surgery performed at Oregon health sciences university inPortland by Dr Kim Burschiel, one of the best in the world. If you do pursue it, study as much as possible and ask as many questions that you can. good luck

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