[Beth T Browne]

I have had sleep problems since 2018. I was diagnosed
With Parkinson’s in 2020.

Nothing could be worse then not being able to get sleep. I have lung issues, heart issues, and others, and I need my sleep to keep my immune system up. Doctors won’t give you any sleep Medication as it is addictive. But what about only getting 4 hour a night. That is hard on the body.

I have MILD sleep apnea and I wear a sleep guard which was helping before Parkinson’s. So, I know it is this disease. I wish they could give us something. I have tried all the things they tell people with sleep problems and nothing works. It is hard to shut the mind off when you can’t sleep and you lie there worrying about how it is affecting the other things.

[Beth T Browne]

I have found the Easy Listening channel on Cox and fell in love with it.  My daughter gave me her old Apple Ear Buds and I put those in and feel so calm.  No singing, just instruments.

[Beth T Browne]

Oh yes.  I found Easy Listening on my Cox Channel 948 and it is wonderful.  It helps calm me and relaxes me.

[Beth T Browne]

Hi C Morts.
I hear you. I could not handle the Leva/Dopa. Bad nausea. Lost 5 pounds. After 2 was, I stopped it. A month later tried Rytary. Had no appetite. No nausea, just no appetite. Had anxiety, and my stamina was way down. My exercise class noticed it.

I stopped both. I am slowly progressing I believe. My legs feel different, but I walk pretty good. Took a Balance Class a yr and a half ago.

I left my first doctor. She said Rytary does NOT cause anxiety, yet the folder that comes with it said it can. My pharmacy said it can. She got upset because I did not believe her. The second doctor said it could.

I now take Dopa Mucuna, 15%. 2 pill daily. I get it from Amazon. It has Dopamine in it. My first doctor told me about it. It also has Velvet Bean Extract in it. I also use the sugar, Mannatol, 1 tsp in my one cup of coffee. The second doctor said the sugar causes anxiety. While I have some at times, I don’t think it is the sugar. I also take a lot of supplements.

I will see my new doctor the end of this month. I hope to learn somethings that will help me more. I have had Parkinson since 2019, maybe 2018.

Betth

[Beth T Browne]

Beth here. I may have responded to this question somewhere, so sorry if you get it again.

I was diagnosed July 2020 due to tremors in my right hand. I thought it was thyroid, but my thyroid doctor checked my blood again and said I needed to see a Movement Doctor, so off I went.

MRI was how she diagnosed my lack of Dopamine. She prescribed LD. I took it two weeks, and was so nauseous I could not eat. Lost 5 pounds, and I only weighed 98. Still trying to gain it back. Tried Rytary. Had no nausea but had no appetite. Also, had more anxiety, and my stamina was down, so exercise was hard. I finally decided to take nothing. I am back to feeling so much better. I do take 2 Dopa Mucuna 15% daily. My first doctor suggested it. I get it from Amazon. It has 120 mg of LevaDopa and 800mg of Velvet Bean which I think has a little LevaDopa in it. I also put 1 tsp of Mannital sugar in my one cup of coffee daily. My second doctor said that sugar causes anxiety. I don’t feel any different. The tremors in my right hand can be better some days, but I still have difficulty at times using a fork.

I exercise 2x a week with a group for strength and balance. My balance issues are not noticeable to others and I can walk down a hallway with no problems. It is in my 2 bedroom apartment my balance appears more. I climb 3 flights of stairs once, sometimes twice, daily.

I am 85, and have a leaky heart valve, and a partial collapsed lung, as I have had problem with allergies since the 80’s and they can make me very sick. I probably will pass before my PD gets too bad. However, both my grandmother and great grandmother lived into their 90’s. One 93 and one 99.

I have changed doctor’s two times and will not go into detail why but basically if a doctor tells me something I find out is not the case, or if a doctor isn’t helping me, I move on. I grew up in a doctor’s home who was loved by the entire town, so I probably am picky. I will meet my new doctor on the 25th. She was recommended by both a man and a women, so I think she may just be the one.

I live in an apartment and have lots of people around and management has parties and activities we can participate in if we want. Great workout room where I should be using the bike and treadmill more. I don’t sit around, as it makes me feel tired. I am moving daily, but get in bed around 8:30. Sleep is an issue.

I am think about taking 1 LevaDopa pill daily, cut in half. I have a digestive issue and that and being very small may be why the pills bother me.

[Beth T Browne]

I suddenly had sleeping problems in 2018.  I could not figure why.  When I relocated to be closer to my daughter, my bedroom was very quite, but I still had sleeping problems.  That next year I was diagnosed with Parkinson.  I was told that is one problem of Parkinson’s.  I did not notice I had slight tremors in my hands.

It is 2022 and I still struggle with sleep.  Doctors won’t give you sleeping aides as I was told they are addictive.  I have tried over the counter items with no luck.  This is probably why I am so tired every day.

I have sleep apnea but have special mouth piece for it.

[Beth T Browne]

I was diagnosed July 2020.  I was put on Leva/Dopa.  I only weighed 98. I told the doctor I often have problems with new drugs.

Two weeks later I had been so nauseous I could not eat, and lost 5 pounds.

A couple of months later she put me on Rytary.  I did not have nausea but a month later I had no appetite, and I had anxiety.  She said Rytary did not cause anxiety, but the folder accompanying the medicine said it could.  I spoke with my pharmacist and she said it could.  I know how I feel, yet my doctor was denying it, so I stopped going to her.

My new doctor said Rytary could cause anxiety and lost of appetite and a few other things.  So, he took me off of it.

I am concerned as I am not on anything now.

 

[Beth T Browne]

My heart doctor recommended Magnesium Bisglycinate, so I have taken that for several years. Recently my exercise teacher recommended PURE supplements. So, I ordered a bottle of mag from them. I was taking only 1 which has 120 mg in it. I tried taking two, which my daughter says is too much, and she is right. I was in the bathroom a lot. But I did sleep better.

[Beth T Browne]

I had nausea also 3 yrs ago when I was diagnosed, so the doctor recommended the Mucuna Pruriens, 15%, which I get from Amazon. Been on it about three years, and the Mannital sugar in my coffee, 1 tsp a day. Can’t say the tremors have stopped, or the sleep problems, but the tremors have good and bad days. If I do too much around my place they get worse, but if I am not doing a lot they are calmer. In July it will be 4 yrs since diagnosed. The only thing that has gotten worse is my memory, short term. The doctor said you can loose that without having dementia, but could get dementia also. So, that has me scared.

[Beth T Browne]

Hi Leslie,

Well, we have some things in common, and they aren’t good. I had Whooping cough when I was 2 that left some issues with my lungs, so I have COPD. I also have osteoarthritis. My fingers are bent. It is bad in my neck also. I am a 28 yr Brest cancer survivor. Grateful. I have esphogus motility which gives me eating problems. I lost 18” of my colon in 2009 not cancer. I have had high blood pressure since my 50’s which makes no sense being I am petite, never had a weight problem, and due to the Leva/Dopa, lost 5 pounds, so now down to 93. I am now trying Rytary. I also have glaucoma but fortunately, it is not bad. I am 84, but I still keep going. I have been alone since I was 39, so I have learned how to do somethings, as my two children left home right out of college. I now live about 20 min from my daughter, however, she teaches part-time, and has a husband, and lots of girlfriends, so I don’t see her much. My son is in WA as is one granddaughter who just had her first son, and my first great grandson. Wish you were closer. I think we would enjoy each other’s company. Blessings to you today. Beth

[Beth T Browne]

Thank you Regina.

[Beth T Browne]

Interesting Don how this disease affects us all differently, but some the same.

I think the classes are helping me, mostly by increasing my energy level and not having the fatigue I was was.  But, it has not stopped the tremors so far, but I have not been doing the class ones but a couple of weeks.

My doctor thinks Rytary will get the Dopamine I need in me, and that is why he is pushing it.  I sometimes seem to shake more after taking the medicine.  And, I am only taking 1/2 4x a day.

I got my booster shot yesterday.  I usually get up twice during the night to go to the bathroom.  This morning when I got up at 7am I could hardly move.  Every bone and muscle in my body hurt so bad.  I went back to bed with the hot pad.  I finally got up again at 9:30 and stayed up, and have been moving around, and starting to feel better.  I got 1/2 dose of the Moderna.

[Beth T Browne]

My front hairline on the right is receding badly.  I don’t know if it is age, or Parkinson’s.  It seemed to just happen this year.  I do loose hair more than I like, and I am on Rytary.  Don’t know if that could be affecting this or not.  The first doctor I had said it wasn’t Parkinson’s.  But, because she gave me incorrect info on Rytary, not sure I believe her.  I will ask my new doctor, if I remember.  I am more concerned about my short term memory then anything.

[Beth T Browne]

Hi Jo. I think I am just now seeing your reply, but honestly, my memory is starting to not be good. I pray no dementia. I have a digestive disease that can not be cured without surgery, and I have a leaky heart valve so they don’t want to do surgery. I am wondering if that had anything to do with all the nausea I had one C/D and the lack of appetite on Rytary.

I am anxious to talk to my new doctor, as I have not had luck with the stories I am getting from the first 2. Two people on her high recommended her,so maybe third time is a charm.

I am glad things are working better for you. Not being on anything and feeling good concerns me, but then the C/D can cause other things down the road, so I hope putting off the drugs won’t be something I regret. Thank. Beth

[Beth T Browne]

Skip, although I am not on Rytary any more, I may have to try again, so thank you for this info. Beth

[Beth T Browne]

Just read your review.  I have posted two at different times, but there is so much on these sites, I can’t keep up with where they are.  I, too, stopped the usual medicine they give everyone diagnosed.  Made me sick also.  Could not eat.  Lost 5 pounds, which for me at 98, is a lot.  Tried Rytary.  Same medicine but in time release form.  Did not have nausea, but had NO appetite, stamina down, and blood pressure up.  Stopped it after 3 months.  Energy back, and I am eating up a storm.  Not taking any thing except the Dopa Mucuna, 15%, I get from Amazon.  I take 3 a day, morn, noon, night.  Still have tremors and sleep issues.  I also am doing the sugar thing in my coffee.  While I may not be a lot better, after 3 yrs, I am not worse.  Balance not too bad.  What is not good, is my short term memory started going last year, about mid year.  Can’t bring up names I know well a lot.  My doctor said he could give me pills, so I will ask for them next month when I see him.  He said lot of patients have short term memory loss and is not always dementia.

[Beth T Browne]

I am just now finding my comments about the Velvet Bean.  It is now January 2022.  I am still on the same dosage, but taking it morn, noon, and night.  No dizziness.  I am starting to add a 4th one at bedtime.  While I still have tremors, and they are best when I am not so active, I have not progressed to feeling much different.  The prescription Balance Class for a month a half helped some, but I have never been really bad.  Turning to quick or bending over is not good to do.  I have been on the Manital sugar in my coffee, once a day almost a year I think.  So, it will be 4 yrs in July that I was diagnosed.  Sleep is still a problem, so I take 1/2 of 0.25mg Xanax to help that some.  If I am going to be out in public for a long time, I take 1/4.  I am small, so I never can take a lot of meds.  I feel fortunate that I have not increased in some areas.  I know the LevaDopa stuff that did not agree with me and Rytary, which lowered my stamina, caused my high blood pressure to be worse, and took away my appetite does not cure Parkinson’s.  I feel much better without it, so I will fight this disease by increasing my exercise program.  I go to a class where  l that is an hour long, no breaks, for strength and balance.  She is a professional and really works us.  But I need to do more.  I am up and doing stuff all day.  I do not take naps.  My doctor does not like that idea, and I really don’t need them.  But must admit, if I sit down too long, I could nod off.  I was told by my heart doctor, and my Parkinson’s doctor that laying down and sleeping can cause high blood pressure, and that started this month.  I have been on blood pressure meds since my 60’s.  Inherited from my father it appears as I have never been overweight, but have cholesterol problems, which is weird.  I have never been a big meat person.  My blood pressure now is all over the place.  So, I would recommend every have a machine and check theirs at least once a day.  I will be 85 next month.  As I have lung issues and heart, I will probably die from that.  I have lost my short term memory which is very upsetting.  My doctor said many PD patients have that and it is not always dementia.  Michael J Fox lost his but not as soon as I have lost mine.  My doctor may give me Botox for my tremors he said.  I hope he does when I see him next month.

[Beth T Browne]

John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.

[Beth T Browne]

John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.

[Beth T Browne]

John, great news. Could you share the medication he has you on? Thanks.

[Beth T Browne]

Alan,

The Michael J Fox Foundation offered me an opportunity to do a DNA so I took it, as I did not know who my bio father was until I was 80. I did not know anyone when I was growing up in my mother’s family that had Parkinson’s. I did do the DNA, and nothing on my father’s side. They say old age can cause Parkinson’s, so guess that is my answer.

[Beth T Browne]

Rick, no words for all you have and are going through except my heart goes out to you. I thought I had the most things going on-leaky heart valve, breast cancer survivor, esphogus motility, osteoarthritis, and now Parkinson’s. I survived cancer but my heart situation is not good but not bad enough for surgery. And, because of the heart, I can’t have surgery to correct the esphogus problem. And Parkinson’s, well only time will tell. I have tremors, sleep problems, and some anxiety. Balance is off but could be worse. The classes I took helped. I should not be complaining, as I have lived a long life at 84. My only desire is to meet my first and new GREAT grandson. He lives in WA and I am in CA. I have lung issues, and have pneumonia several times, so travel now is out of the question. My faith is keeping me going for now. And, I pray for all who are struggling with Parkinson’s. Exercise is helping me now more then the Rytary.

[Beth T Browne]

Welcome Regina. Do not know what dx is. I do know about essential tremors. They thought I might have had that, but an MRI showed no Dopamine, and just Parkinson tremors. Could not handle the Leva/Dopa. Made me so sick I lost 5 pounds, and I am petite already. I am on Rytary, taking is in a small amount 4x a day. The new doctor started me 3x a day and recently added the 4th dose. I can’t tell it is doing anything. What does Rasagaline do? I still do most things, and am in my 3rd yr. Sleep is a problem. I try and stay on my feet, as the doctor would rather I not nap, but if I do, no longer then 30 min.

[Beth T Browne]

Unfortunately, I have many. I am a 28yr cancer survivor. Whooping Cough at age 2 did some damage to my lungs, and in the 80’s things started and have continued. I now have a partial collapsed lung, with an old bronchesitis mass on it. I have no idea how long it has been there. Now I have allergies very bad and often. I discovered back in 2012, I had esphogus motilaty. The meds they gave me then helped but they took it off the market in 2020 as they found cancer in it. Great. The medicine I am on now helps some but causes terrible belching. My leaky heart valve is not good, but not bad enough for surgery. My glaucoma got better after I had cataract surgery. Now with Parkinson’s, I am wondering how much longer I have and trying to stay positive. I have my first new great grandson in WA I want to see before I go. That’s a good reason.