Newbe here trying my best to accept this ... - Cure Parkinson's

Cure Parkinson's

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Newbe here trying my best to accept this disease.

dfasci profile image
dfasci

I'm 57 and have had PD for almost 12 years. Yes i'm still trying to accept it. Symptoms over the last few months have been terrible. I'm "off" more than 50% of the day especially after eating. I don't like eating anymore. I recently got fired from work due to bad behavior which I believe was due to Requip which I have been taking since the start. Had 31 years in the government of that 20 years active duty Navy. I'm off the Requip now and things have been worst with the PD. I just started Rytary and not to sure about it working. I've got a court case coming up whenever, back surgery next month and lovely PD.

By the way, hello everyone. I hope to gain some insight on coping with this. Oh yeah, I haven't really slept in over a month. Sorry about posting all my problems.

13 Replies

Its really good on your part that you managed to do the job for 12 years with PD. I can only suggest you regular exercise. Its helps mitigate the depression and improves sleep. BTW you have mentioned that you were expelled from job due to behavior issues. May be the employer has made it as pretext and the actual reason might be PD?

dfasci profile image
dfasci in reply to Farooqji

My job had me in front of a computer for the most part, not to bad. I was getting slow and not getting much done. I was at the point of maybe I should retire from the government on disability but then I kept doing the bad things knowing they were wrong and the risks involved. My sister is a doctor and her first words were "it's the PD". My doctor who I had just started seeing asked "are you on Requip?"

The issue about losing my job, my retirement and coming off Requip made my symptoms much worst.

I keep telling myself to exercise, I used to lift weights and now I'm just skin and bones (lost 30+ lbs). I tend to do other things when I'm able and always forget the exercise. Need to change my habits.

Hi

Truly sorry to hear of your problems...I often say to my wife 'nobody understands' and it's not just pointless grumbling - it's true!

I have had pd for 15 years and have also had DVT (self-injecting myself in the belly as my wife was away) two expensive back operations and on Thursday am having my prostate cut away by laser as its much too big). All these additional treatments completely screw the pd regime so its'start from scratch' with timings.

I too used to take requip but it messed me up so after several years I just stopped! That reduced me to a quivering bundle of unhappiness.

I have just posted 'Meals' today, perhaps you would be kind enough to reply.

Really,really understand the pain you are in

Good luck

dfasci profile image
dfasci in reply to John3419

Hi and thanks. Yes nobody understands, my wife and daughter are both RN's (BSN, MSN) and they don't. They do try to get me to eat more but for some reason my medications and food don't mix. I can never time it right and I know that after I eat I'll be "off" for hours. I really don't like my "off" times, I have dystonia, that tightness of the muscles on my whole body. Don't know if this goes for all people with PD but I hate it. My spine surgery will be interesting.

I will check out your "meals" today.

I can only tell you about my experience with Requip Depot. I was 55 years old when I was diagnosed with Parkinson, that was 13 years ago. Requip depot was one of my earliest medicines together with Eldepryl 100 gr. After about 8 years from being diagnosed I finally understood that I had to start up taking L-dopa. My first was Sinemet - and I used these three for 4 years, and from the day I started with Sinemet 50mg everything was so much better. Now I can write again, no trembling, - many things got better. But in 2016 I felt that I had to increase my medicine so now I 'm one: 10 Mg Eldepryl every morning. Requip Depot - in total 14Mg with my breakfast. And we changed to Stalevo 75mg - 4 times a time. This works good for me at the moment. So I'm not really shure that my medicine-story can help you. I take my last Stalevo at 8 o'clock p m, I fall asleep at about 11 p m. and sleep for about 6 hours with one toiletvisit during the night. But my worst enemy is pain in my hips, lower back - and in the front of my leg all the way down. I can only wish you the best of luck - and I would advise you to think positive about our life with Parkinson, that's the best way to cope with this diagnose.

dfasci profile image
dfasci in reply to monast

Thanks for sharing. I do need to be more positive but it is hard when I'm staring out the window looking at all the yard work that needs to be done along with everything else, I consider myself to be a handy man doing everything myself and of course there are times I can't even move.

I'm doing the Stalevo and sinemet also since being off Requip. I started with Requip and remember one morning waking up after taking a whopping 4mg that I felt normal. This was a while back, Ive been taking 24mg everyday along with Stalevo 4 times, sinemet CR 3 times. Now I take Stalevo 25/200/200 at least seven times and sinemet EQ 25/100 five or six times. Bed time I take a stalevo and pray it works for a couple hours. I always wake up at 1:00 am and watch the clock and take something when my body freezes.

I'll admit that the 12 years that I have had PD, the last 4 or 5 months have been have been the worst because of all that has happened. I guess what doesn't help is that my wife and I basically live under one roof and I'm in the basement most of the time. My "off" time is spent there, can't be around anyone.

Welcome aboard the website, I'm Terry. I'm a retired old grandmother of 5. Don't know how long I have had PD -- seems like I've had symptoms forever. Was Diagnosed a little over a year ago. Not sleeping can cause the other PD symptoms to be worse. If it was me (come to think of it was me a while back) I worked with my neuro to get which meds helped me the most with my insomnia. Once the insomnia was solved I still had lots of PD symptoms and I wound up going to my neuro every two months to get a regime of meds that suppressed them. I feel that I'm in a good routine for me. I take walks at least 4 times a week and that has helped tremendously if I don't tire myself out and overdo it. I'm now at every 3 months for my neurologist.

dfasci profile image
dfasci in reply to TheresaCurley

Hi Terry. I was taking Trazadone now I take Clonazepam for anxiety which helps a little bit. Funny I'm writing these replies at 3:00am so another good sleep night. I usually sleep some during the day. Also I'm not sure what most do during the "off" times but I like to lay down in bed.

I do need to get out more and walk, enjoy the outside. I'm a car guy and now I can't drive as much by myself.

So very sorry to hear about your troubles! I have found out, the hard way, that most of the time, the people that truly understand, and have the ability to empathize with what I’m going through, are people who have PD diagnosed, themselves. Because PD is such a complex disorder, that can affect a person in so many different ways, and not each person, perhaps, the same way, it gets rather difficult at times, for those of us, who experience a number of symptoms. If you were relieved of your job duties, due to what PD does to you, perhaps you would have a case for a magistrate/ attorney, to look into. Don’t apologize for posting your problems on this forum, please. We all do that, to an extent, I think. It’s good that we can all discuss these things together, because it helps all of us, I believe. Not sleeping is a problem, because your brain needs the sleep to recoup energy etc. Being “off”50% of the time, I’m hoping, could be improved. Do you have a good movement disorders specialist and/or neurologist that could work with you on adjusting medicine doses and help you with taking the right kind of medicine? I have not had any experience taking Requip or Rytary, only Sinemet. I have about 20% off time between doses of Sinemet.

dfasci profile image
dfasci in reply to ddmagee1

Hi. Yes I'm waiting for my court date. To be honest, I was arrested at work for what I did back in July. That was 4 months ago and the uncertainty is killing me. I have a good lawyer and my only defense is my PD and medications. I'm ashamed at what I did and know that it wasn't the real me that did it.

I think I have spilled all the beans in my replies today. One more bean, I have a tendency to get angry when i'm "off". My daughter tells me I curse a lot but I tell her it's my sailor mouth.

My doctor is trying Rytary but I don't think it's going to work at least since I've been on it I haven't noticed anything. I still have to get my schedule down for my meds, I always forget when I took something last. No one to blame but myself.

I understand dfasci! I didn’t mean for you to spill all the beans; however, I’ve been at the point that my PD and Ataxia and the pain has been so bad, that I’ve become real short tempered. That’s not the real me, and if I had been working, there could have been trouble. I’m rooting for you! I understand only too well about the disease and medicine inter reactions etc. Without medicine that helps, it’s very difficult for me to deal with PD and Ataxia, because it affects nearly everything I do. Good luck and I’m hoping the lawyer will gather enough evidence to prove that illness can detrimentally affect a person’s behavior, and it is not all the person’s fault, because there can be a problem with certain medicines and/or illnesses (such as PD).

dfasci profile image
dfasci in reply to ddmagee1

I needed to spill them, no problem.

I tried Requip at the beginning. Made me feel bad wanted to sleep all the time. Taken several different things over the years, Rytary is the latest timing is the answer for it.

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