My husband seems to be getting weaker and having more issues on the Levadopa/carbidopa that he was put on immediately by his neurologist. His movements are slower he complains that he is not sleeping at night, that would be because he sits on the sofa sleeping during the day. The OT came yesterday and told him no more than a 1/2 nap during the day. He claims he didn't sleep at all last night and is completely exhausted today. Have read about Rasagline. Is anyone taking it? Also read that a high protein diet will cure him. Since I am leary about abut either options I don't know how to help him. His regular neurologist is sending him to another one who specializes in movement disorders but she can't see him until May. Does that mean that he doesn't have Parkinsons itself but what he calls Parkinsonism. What is the difference if any? He also does not have any tremors but only the movement issues. Any input would be appreciated.

36 Replies

  • BTW, he is not in any pain

  • my opinion / not Parkinson's

    Time for you to seek other doctor(s) for second opinion


  • Hi RoyProp, He has an appointment for a second opinion but not until the end of May. Why do you say he does not have Parkinson's?

  • sleep/exhaustion/movement plus His regular neurologist is sending him to another one who specializes in movement disorders

  • What else could it be?

  • I do not know. Thus, the movement disorder doc.

    National Parkinson Foundation - Joseph Jankovic, MD

    What are the different forms of Parkinson’s Disease?

  • Fibromyalgia? Polymyalgia rheumatica?

  • Other common early symptoms are changes in personality, general slowing of movement, and visual symptoms.

    Later symptoms and signs are dementia (typically including loss of inhibition and ability to organize information), slurring of speech, difficulty swallowing, and difficulty moving the eyes, particularly in the vertical direction. The latter accounts for some of the falls experienced by these patients as they are unable to look up or down.

    Some of the other signs are poor eyelid function, contracture of the facial muscles, a backward tilt of the head with stiffening of the neck muscles, sleep disruption, urinary incontinence and constipation.


  • IT could be Lymes DIsease that is what started my journey Have a blood test for the deer tick. Lymes is a horrid disease. I had anit botic IV infussions for 2 yrs 2 hrs a day 4 days a week to get rid of it. Then because of the nerve damage I know have Parkinson.

  • Eating protein near the time you take Sinemet makes the Sinemet less effective. also important that the Sinemet be taken on time every time.

    Parkinsons plus refers to three other diseases with symptoms simaliar to PD. They are MSA, PSP, and CBD. All of them are worse than straight PD and progress faster.

    I strongly suggest you do some online research regarding these conditions and PD.

    Also not all people with PD have tremors.

  • It would be helpful to know what meds your husband is taking, the dosage & frequency. I was put on Sinemet 10yrs ago on dx (diagnosis) as part of a trial & I had many of the symptoms you describe. I fell asleep at any time, had postural hypotension so when I stood up I fainted or fell down, couldn't walk properly, slurred my speech. I frightened myself & my family. Now Sinemet suits me as my PD has progressed. I also take Ropinirole (Requip) an agonist. These two keep me going & I take other meds for refinements. I shake but also recently started to freeze. Do you have a PD nurse? They are usually right up to date & have more time to talk than doctors. I wish you well.

  • Was he given a DaTscan to confirm the diagnosis? Also, while there is no cure, we can slow the progression of the disease down with vigorous exercise -- brisk walking, treadmill, whatever gets the heart going. They say 30-45 minutes at least five days a week.

  • This sounds exactly what my husbands symptoms were he didn't have tremors / shaking either the neurologist. Would not say it was psp but I knew it was The doctor pats GP decided it was parkinsons and he was on levadopa carbadopa. He was in a terrible state with that drug if yu want to no more Post I will be happy to help MARG

  • what you descibe is so very much like my husband .

  • It's so awful I don't no how I stayed sane thru it I wished I had of had someone to talk too that understood what I was going thru and dealing with It kinda tore the family apart it is so awful there are the people who don't believe yu Giving yu advice which they expect yu to take So much crap and the doctors don't want to be bothered with yu either Just saying levadopa carbadopa was no good for my husband it made him crazy Post any time girl I will be here MARG

  • will do ,

    I know what you mean when yo say no one would believe you . it's really only the people concerned who can possible understand .

    Ypu don't want to tell everybody all the intimate things that ahhpens . The rest is the tip of the iceberg .

    it makes you so stressed which makes you even more tired when you need all the energy you can find .

    on top of everything yesterday we had a power cut . by the way I am in the UK .

    it set all the alarms and buzzers off including stirlift hoist cooker washing mackhine and micro wave . then when it was back on I kpt getting messages on my mind ike telling me we it would come back and another to ask if we were ok .

    I have applied for priority in the event of power failure .So at least that was working lol.

    I am unsure how much power is left in the hoist battery so don't want to get stuck .

  • Hi cabbage I sure feel for yu do yu work that lift ???? I am in Canada How old are yu people ??? I don't mind telling yu I am 70 my husband was 73 when he died In jan After at least 9 yrs of struggle / heartbreak devastating / I had to discover myself what I was dealing with Docs neurologists just wanted us back in 6 mths Cause not sure !!!!!

  • hi , I live in Wales . UK . my husband is 83 I am 78 .

    Have been hands on since he was about 70 . everything happens so gradually . with this illness you have find out everything yourselves don't you l. the lift does the heavy work .

    Took me quite a while to get use to learning the best way for me to use it .

    the OT was very helpful and got me the best one she could , everything else I learned by looking on the Internet . .

    I am very sorry to hear of the loss of your husband ,my yes it a terrible cruel illness . Awake care xx

  • Now I have a better idea of yr case so yu have had a lot of yrs of this I was very fortunate that my husband was a real good sleeper I am too that saved me Cause I could always get my sleep Thank yu for condolences In the end it all happened fast I swear he hung on so he wouldn't spoil xmas for everyone. He loved it It was always a great time of yr do yu have regular daily help ?????

  • John sleeps mostly all night . Have the odd bad night . he does all me to ask the time . I have a baby monitor attached to the bed rail I sleep upstairs he is down in a hospital bed .

    I go to bed late and rise early for when carers come , by the time they have come I have done all his personal bits but at least I know someone is coming in , after all I could be ill or worse and no one would know .

    then they come back at night to help get him back into bed . . although I do need them more often , I have found it hard to let go .

    he is pretty good natured still . Of course we both have our moments now and then . WEll Who wouldn't under our circumstances .

    we have been matrrried 56 years

  • I sure sympathize with. Yu. I totally understand yr lucky he still has good moods Make sure yu get yr rest Yu need it take care. I'm gonna be away for a few. Days will be busy with grandchildren I understand all the love we were married 51 yrs I would not let him finish life in. Hospital I new no one else could care for him like me he was home till end Yur doing a great job Good luck ooooxxxMARG

  • Dear Kolton,

    I'm so sorry for your loss. You've really been through a lot, and now you have to figure out what your life will be now. My heart is with you. Best wishes to you. I'm sending you some warm sunshine from Hawaii.


  • Hi Auddonz. Your husband's condition sounds a lot like mine during the 1st 2 years after diagnosis. I slept a lot every day and at night I could not sleep at all. I was in depression and that was not surprising, considering that I had been told, "Parkinson's is a progressive neurological condition, for which there is no cure. You will become more and more rigid until you become bedridden and are unable to move". What else would anybody do after hearing that?

    After 2 years I decided to take matters into my own hands and try to fight it. I was not prepared at the age of 60 to just give up without a fight. Seeing that Pd is a movement disorder, I thought the best way to fight it was to move as much as I could. Although I had been going to the gym every day, before sitting down in my chair and trying to read, but only succeeding in falling asleep. I was getting nowhere. So I started an organized walking program, which aimed to get everybody to walk for 1 hour, three times a week. After nearly 5 months I managed to get up to 1 hour and then set about walking as fast as I could. I got to the point where I was walking 1 kilometre in less than 6 minutes and 40 seconds. When I had started I was only able to walk 1 kilometre in over 10 and a half minutes. That told me that I was able to improve my health, but I had to put a lot into it. Sitting down and sleeping does nothing for us.

    Even if we feel as if we are not capable of even walking fast for 1 minute, you would be surprised what you can actually do. Just the thought of becoming bed-ridden should be enough incentive to make that effort!

    I took Selegiline for 8 years. That is the same type of medication as Rasagiline. It worked for me. I had stopped taking Sinemet and Symetrel after the 1st 2 years.

    Good luck


  • All the symptom s described by Roy p/prop are PSP symptoms My husband had them all and my information says if the patient does not have pd that drug does nothing for them but PSP is so rare it is often overlooked as the diseases progress there are big differences my husband had a slow progression At least 9 yrs I'm sorry to say I have a head ful of information just ask ???????

  • PSP is what Dudley Moore had.

  • Hi Pete PSP is exact ly what was is he had What robin Williams had was very similar to PSP but worse yet Lewey body dementia. ) it's a horrible one cause people hallucinate and perception gets crazy Nice talking to ya MARG

  • I have heard that high protein meals (dairy especially milk) too, may interfere with the absorption of some PD drugs.

    Parkinsonism is a generic name for all PD like ailments. This is used when diagnosis is unclear. This is often with early stages of PD. There are something like 10 alternatives.

    Disturbed sleep patterns is a normal PD symptom. This means it is more than sleeping during the day leading to not sleeping at night. Some drugs interfere also disturb sleep patterns.

  • Hi he needs to do some form of exersise daily I have little tremor but movement issues but every day I ride my horse it also releases endorphins which help with sleepiness. The exercise will help with the weakness it's very important. Regards andrea

  • Hi sweetie, well I don't sleep myself at night and was given seriquil (sp) for it but it knocks me out at a low dosage so I take it if I haven't slept much. My neuro said if the carbidopa/ levadopa worked to control my issues I had Parkinsons (which I do) so I'm not sure why they would give it to your hubby unless he thought he had Parkinsons since it doesn't help Parkinsonism (what I have read about and discussed with neor)...that being said sleep issues are rampant with Parkinsons along with a host of others like memory, speech etc. The movement therapy may help him with movement problems, that being said my dr thinks for me it would be a waste for me since not only Parky but Arthur as well in fact for almost 3 yrs the docs thought all my issues was a trapped nerve from my spondylitis until both sides of my body was shaking...Sometimes it takes yrs to get things sorted but I do hope for you and your hubby that he is being looked after and it seems like your docs are trying to give him great for protein as others have stated allow the med to reach him before protein it inhibits the med and is wasted if protein is eaten too soon after a dose usually 1/2 hr to 1 hr I research like I'm going to med school myself because I found out the better informed you are the better to help yourself (just don't google the common cold or you'll wind up thinking you have the plague) lol... Good luck hun and your hubby is a lucky man!!! All my best

  • In order to make a Parkinsons diagnosis and be prescribed medications I feel you need a neurologist who is a movement specialist. I'm sure if one doctor can't see you there are other movement specialists with whom you can make an appointment. You don't have to be limited to the specific person recommended by your neurologist just look up movement specialist neurologist in your area.

  • After reading your comments and before reading any other replies, i will tell you what works for me, stay away from high protein with the meds he takes. I take a Vit B complex daily, plus try to do some walking, keeping busy, helps me sleep.(don't do to much). When you mind is not active and the meds make you more s hard sleep at night after sleeping all day. Keep water handed, always drink something when taking meds, chewing pills are hard on the teeth. Plus keep the bowels moving, Junk in the truck slows me down. Hope this helps. The movement clinic is a good place, maybe they have a list if someone cancels he can be seen sooner. Good luck. Better days ahead, Thanks for trying to help.

  • Check out the website.

  • Don't jump to any conclusions until you see a movement disorder specialist. There are PWP who don't respond to sinemet straight away but get on with agonists. Others need higher dosages it l depends as pd is so very individual.parkinsons rarely feel thirsty so their fluid intake is poor which can lead to dehydration. A high protein diet can reduce the absorptionf sinemet in some but not others. Just a normal small portions regular through the day with plenty fluids can help. Medications given on time and regular is the clue with fluids and not with food. Vit c in Orange juice can improve absorption. Avoid constipation at all costs as absoption slows right down

  • Trying to see a movement disorder specialist. The one recommended left the facility, earliest appt July. I may cry. TY for your input

  • Hello I am a 44 year old was a firefighter very active healthy eater always took good care of my self and was diagnosed here in Miami by Dr.Sengun at UM 4 years ago with Parkinsons or PD.

    My comments are on my experiences only. I was on all three meds at one time but have cut back to only Senemet 100/25 taking two in the mornings to get me going on an empty stomach once it kicks in I have a light meal remember that most protein will compete with the carbadopa and nullifie the effectiveness of my meds for hours so watch out with proteins before meds.

    I take azelect 1 mg daily and 1 senemet about every 1 1/2 hours After my initiall double dose. Exercise is very Important in my treatment if I miss a few workouts I go downhill quick. My work out consist of biking walking stair master and high repetition lightweight wt training. I have tried to back off on meds but my movements slow and I am not able to function. and yes as mentioned must force yourself to drink water no sense of thirst, taking meds with orange juice makes meds work better. .Exercise exercise exercise must move as much as possible best medicine. Try and keep workout diary and plan your next day or week give yourself goals to Meet. This will help you stay motivated and focused. .

    If you have any questions feel free to Ask

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