Parkinson's Blues

Hi everyone,

1:36 am , can't sleep. Have the need to vent. Hope you don't mind, where else can I go with this shit. Please excuse the language, it was truly the best word

I feel so far out of the loop, any loop, every loop. Disconnected is my middle name. No sleep, fatigue, working, worn out, can't function while questioning myself every moment.

Trying to learn a new system at work, thought I was smart enough. The trainers look at me sometimes as if I have three heads!! Absolutely for the life of me, I cannot remember things I just did, or was shown(computer stuff you know).

Requires at least two times, sometimes three before I can recollect a few simple steps.

Am I not listening?

Want to hear something really stupid? I actually had this absurd notion of going back to school, to earn a degree I initiated many years ago. I need a new career, I can't keep up with my responsibilities at my current job, nor the physical demands.

I can't keep track of anything, hugely ridiculous to think I could manage full time schedule in college. I am sad, I want to cry....won't do me any good. guess I'll wait for another , more warranted exuse.

Thanks keyboard and a blank square, and healthunlocked...for giving me a place to go.

53 Replies

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  • I can't sleep either. I am definately out of the loop. So tired of feeling like this. I haven't worked din almost 2 years, which makes it worse.

    It's difficult to reach out. Most don't understand how I feel, and don't come around as much. SO depressing.................

  • Hello Imacquin,

    I feel like an ass , complaining about my job when so many don't have one. Forgive me for that.

    Notice I always seem to use at least one profane word in my posts. You should hear how many others I've been using, mainly when I am talking to myself.

    Depressing doesn't quite sum it up does it? I am forever in search of optimistic ways of feeling and thinking. It's getting harder and harder!

    People say they understand, they don't. They can't. Still they should try , and most certainly not abandon us.

    We can be there for each other...what do you think?

    P.S. my silouette portrays me as a man....I am a woman...lol, what's left of one anyway.

  • le us have picture of you please

  • I miss working, just not all the politics and garbage. Mostly the interaction with people is what I miss. I'm glad I don't have the pressure of having to be to work at a certain time.

    I don't see how people can understand. I couldn't have imagined this if I weren't standing in my shoes!

    We have to be here for each other. After all, we understand!

    SO where do u live? I'm in Louisiana.

  • I am in Pennsylvania, work in New Jersey as nurse manager of a large family practice.

    Ready for this, my one profane word...I "suck" at my job these days!

    i expect my coorkers to have some understanding or something!! We work in healthcare for pete's sake...lol

    What type of work did you do? I can understand missing the interaction with others. Its what I used to enjoy most about my work. Not so much anymore for I struggle so much with my inability to move easily.I am self conscience about how awkward i must appear to be.

  • ok so 2:49 a.m. and I am pissed!

    Why? Because I really dislike the fact that I misused a word. i know , I know, silly isn't it? nontheless it bothers me.

    The word should be conscious, not conscience. oh man, I will really be "pissed' if I misspelled something.

    Fancy myself as being humorous at this point, bear with me ...lol

  • My best friend is a nurse. I know she understands me.

    I was technically a go between from the plant to corporate in a manufacturing company. I actually created reports that solved everyones problems.

    My work was going downhill, so my boss told me. I sat in my car at lunch to sleep. It was not easy to stop working, really glad I did. i just gets lonely and boring here by myslef. Most the time I'm ok, but have my depressing times. Like tonight.............

    I admire you for continuing to work.

  • Imacquinn, please see my response to you in the leave a comment section, I inadvertently put it there.

  • you r humorous, thanks - I need that about now!

  • I am curious as to your screenname...I am thinking we have something in common, my name being mccshe..am I on the right track?

  • Sounds like an important job that you had. I admire you for knowing when to say when, do you know what I mean?

    I continue to work because I can't stand the thought that I can't do it anymore.

    OMG, I thought I was the only one who sleeps in their car to sleep at lunchtime!!

    I am sorry for your loneliness, don't know how I would deal with that, although I enjoy being alone sometimes for I entertain myself rather well. I taught myself how to crochet a few months ago. The most therapeutic thing in the world to me.

    Also I dabble in playing the piano, I love music beyond anything in this world. I am listening to music as we chat!

    We are sharing one of those depressing times tonight, and I am grateful to you for it!

  • Hi another music lover

    I cannot play any longer but still sing.

    Lo l Jill

    :-)

  • hey jillann,

    read your about me profile, I didnt feel as though you were being negative....rather sharing your symptoms, and wow , definitley a lot to contend with. my best to you in dealing with all of that.

    struggling to play paino, but that I cannot give up, for it is such joy to me. Was wondering what kind of music you liked to play and what you enjoy singing. I love to sing also , despite the fact that i am not so good at it,my husband could probably share a few thoughts on that...lol.

    Love the cat, I have two!

    thanks for sharing

  • ok so one of us went off to sleep, I can be pretty boring..lol. Great treatment for insomnia...thanks for chatting...

  • I tried to sleep, still can't. Oh well. I appreciate u as well. Thank u for chatting, and u r not boring.

    When sleeping in my car became more difficult, I closed the dooor to my office and turned off the light. The car was actually more comfortable.

    Playing the piano is awesome. I have a lot of weakness on the left side, so I don't use my left hand as much as I should.

    The screen name is my first initial and my last name. Not very original...

  • I can't sleep either...this is not funny anymore, what happened to the day I could sleep from 10 to 10...I wake up at the slightest sound, lie awak for hours, tired is now my middle name, back ache neck ache, shakey arm, carpul tunnel...and you know what's funny...SS says I can go back to work...I wish!!! Having PD makes my life pretty hard at times but I am strong and have the support of my family...even being broke won't stop me...it is the little things I miss the most....sleeping 8 hours!!!

  • Sleep , I've forgotten what that is really. i know what you mean about neck and back ache and pain. Deal with it every day and night, sometimes it is so bad I cannot lay in bed.

    I love how our social service people think they know how to deem who should receive benefits and who shouldn't. In my opinion they are a bunch of sniveling fools and i have never collected a dime I didn't work for, so I am not biased in any way.

    Living with PD is very hard, others don't know how difficlt it can be. Thankfully you have a good support system in your family.I too am very fortunate in that way, as I have an amazing husband . i am glad for both of us!

    I taught myself to crochet a few months ago and the nights that I dont sleep ...well, I make things..and I love it!! Also I dabble a bit in playing my piano. i keep myself busy. I have almost learned to love the nighttime...that is till morning rolls around and I have to function in the real world..

    Check out Youtube ,..many points of interest there. I find lots of , as you say, little things there to enjoy!

    Be well!

  • Can you remember everything you had learned before PD.

    I have I am a Paramedic and I am getting really frustrated that it is difficult to remember new things and it is essential for my job.

    I was diagnosed in 2006 at age 42 and I am just about managing to hang on to my career, it is so important to me and I love the job so much I get so much satisfaction from it.

  • Hello Mally,

    Remember everything...oh how I wish. There is no rhyme or reason to the things in my memory. It makes me sad , so I try to enjoy special moments as they come, knowing full well they can be gone tomorrow.

    Wow diagnosed at 42, that sucks!! I was 48, that was two years ago, approaching three. I am a nurse working as a manager in a doctors office, not doing great.

    I remember most of the things I learned on the job, you know hands on experience in hospitals and whatnot, its the new stuff I have a problem with.

    But then again , believe it or not there is so much to remember, the details are endless.

    Repetition is the best way to retain thngs, also, I keep my mind active via word games , memory games etc. Believe me when I tell you they are helpful exercises. Have you heard of Lumosity? It is a site where there are memory exercises and games designed for people like us.

    Thankyou for sharing your story with me, if you care to talk more you know where ot find me.. :)

    hang in there, new developments all the time!!

    P.s. I wanted to tell you, you know what I always remember??? Lyrics...you know the words to songs ..don't know why, but I love it

  • I feel your pain. I would sit in front of the computer screen and not remember how to do something I had done a hundred times before. I started writing down the steps and using a cue card. Then I could not write down the information I was given on a phone call because my hands shook, then I could not type because my hands shook and my eyes could not track the lines...Eventually, I was asked to resign.

    Now I have the stress of no income and waiting on disability. I cannot get words out of my mouth, sometimes they come out in the wrong order or mixed together. I forget and leave water running in the sink that overflows, food cooking, etc. It scares me for what the future will bring.

  • I think many of us suffer from lack of sleep. It happens to me very frequently,in fact last week i wrote a poem about it.

    Time brought to you by Parkinson’s disease

    quarter to four, the lights are low

    problems with fixes just too slow

    Pain holds my hand, can’t break free

    I am tired and sleep alludes me

    four a.m. on this dark night

    tremble and shake, not in fright

    body not mind controls me

    I am tired and sleep alludes me.

    quarter to five, rain splashes my face

    Tears of fear and frustration have their place

    When words no longer come easily.

    I am tired and sleep alludes me.

    half passed five, I see some light

    Day dawns , I resume my fight

    I work ,I play, I laugh , I cope

    I am tired , sleep ,no longer allude me.

    By : Lisa Hannigan

  • Thankyou for this.

  • Remember most people have difficulty sleeping from time to time. Others will be up with you in the night. All your thoughts, worries, pains become exaggerated in the night, so you just have to breathe slowly and count..meditate and say positive affirmations. Your b ody will always catch up with sleep when it needs it. Make space to relax a bit the next day.

    What helps me is eating something light and digestible in the evenings. Never have fruit after 5. As acidy in your stomach. Try avoiding wheat...buy gluten free. Do some stretches etc in the early evening and slow down gradually..have a camomile tea before going to bed or a natural calmer. Watch something light on tv or read something that makes you smile. Avoid horror and bad news on tv..just remind yourself what a truly lovely person you are and give out good feelings to everyone all over the world. There are always people worse off than ourselves and no one escapes with aging....just noin hands! :)

  • Join hands!! I forgot always arrange for something nice to look forward to. Another thing I do is to imagine /inventmy favourite house..usually for me being english a large american ranch house with veranda and balcony! It has nice surroundings, gardens, water features, etc.and i can wander down to the sea! In all the rooms in the house there are different things i enjoy...a reading room, a tv room, aknit and natter room, a gym, a dance and music room, a tea room, peopled with who i feel like having around me..no one i know in real life! I choose a room or wander out for a walk etc...! Im probably bonkers but it helps me.

    If nothing will distract a pain or worry try EFT..theres a thing about it today or look on utube for how to do it. Good luck!

  • Hi great stuff

    Lol Jill

    :-)

  • words of wisdom

  • With you on this, hilary

  • Lack of sleep and a busy job would wear anyone down. You seem to be managing where many others would not be able to cope at all. You should be proud of yourself.

    Parkinsons is a bu**er. It pounces when we do not expect it and affects us all in ways we could not have imagined. I think the inability to remember things must be part of our condition. I know it is not the same but I was a PA for many years. Now I can only type with two fingers and a lot of my words are not correct.

    Also, I often know the word I want to use, but cannot say it.

    All in all, Parkinsons would try the patience of anyone and is truly frustrating. I know you don't want to, but maybe you could cut back for a while, until you are able to get a better sleep pattern.

    Hope things get better for you soon.

  • Thankyou for your kind and complimentary words.

    Words...ah yes , elusive they are. They are plentiful in my mind, just not so easy to extract, I see you know what i mean.

    Truly I shoudl not complain, I am fortunate in many ways.

    Tonight I fell at work in front of many people, embarrassed as I could be, I told them , "there's no charge for the entertainment"....sort of broke the tension.

    This day I learned not to push myself so hard.

  • Well you did handle your fall well. Sure people understood how embarrassed you were. I am glad you are not going to push yourself so much. I think we all have to find our own limit and try to push the boundaries gently. I always try to set myself a new daily target even if I don't reach it. EXERCISE is, I believe one of the keys to keeping this Parkinsons at bay.

    Good Luck

    Sue :-)

  • You're sweet Sue..,,

    Thanks,

    Sheila

  • Fhi I fall many times

    It does not embarrass me now- just others

    Lol Jill

  • Jillann...love your sense of humor!

  • hi

    hoe about doing easy crosswords

    cna be done online and if you do not knwo the answer you cna cheat / look it up

    i cannot write wireds any more and find the online guardiain quick x words good therapy

    ;;lol Jill

    :-)

  • When I was 44 I had early menopause and did not sleep for 2 years. I got through it and didn't get dx with PD until 64. Can't imagine having both (maybe) at the same time. in any case my neuro said sleep is of UTMOST importance for meds to work, so yes I would do whatever to get back in a sleeping rhythm. I still don't sleep unmedicated. But at least I sleep some. Wishing you well.

  • Well my smoke alarm just went off. I forgot about my oatmeal with raisins bubbling on the stove so time to wake up and let the smoke out!

  • Interesting statement for a neurologist to make, go figure.

    Thanks for reading my rant...lol...I wish you well also !!

  • I too have a big problem with sleep. My PD nurse prescribed 2mg Requip xl at bedtime, but it doesnt help. Ocassionally in desperation I have a Zopiclone, 3.75 mg prescribed, but Im only allowed 14 per year, so its for desperate times. Sometimes Ive noticed if I have a small glass of wine with dinner, I get about 6 hours straight, which is enough to manage on. I read chick lit, knit quite a lot (my OH sleeps by himself) but usually have to manage on about 4 hours sleep. I have a p/t job, so its difficult. Maybe more wine would help?

  • If youve had a bad night often its good the second night with a glass of red wine..good for the heart and cheering! Schlonko burp!

  • Cheers!

  • Yes and the red wine and chocolate is great 4 constipation

    Lol Jill

  • and WATER..!

    8 glasses a day..

  • hi hilary

    of course

    the water b4 the iwne

    lol JIll

  • I was reading an article recently about drinking 8 glasses of water a day. If I did this I would never be able to leave the house as I would need the loo all the time and all the public loos in this area have been closed!! It said that water goes straight through you and to eat fruit containing water, in particular lots of watermelon.

    Think I will give this a try as I know I don't drink enough fluid.

    Sue

  • Have sleep meds too, but if you don't take them early in the evening , well you can forget about functioning in the morning. Can you believe I always forget to take them . I just don't think about going to bed at 8 oclock.

    I'm kinda liking the wine idea :)

  • Interesting to read that you take your RequipXL at night. I take 6mg in one dose during the day. On the occasions I forget to take it and take it in the evening I find it does not help my sleep patterns at all. To be honest, I am not sure if it helps my Stalevo to last longer or not.

  • I feel sorry for you, it is my hubby who has pd, could I suggest to you that you may be depressed, sorry you may know that already or not. Take care and hope you can get some quality sleep

  • Thanks for reading my post. You could be right about the depression. May have a bit of denial going on, you know in that I still expect to be as able as I used to be.

    I'll sleep eventually.

    Don't be sorry for me. I failed to mention that there is also much joy in my life. One of those joys being reached out to by people such as yourself. Did i say thankyou? :)

  • Don't feel badly abut unloading this "shit", and that is the correct word for it. I've had PD 10 years and only correctly dx'd for 4. I still don't know what to do with all of the symptoms except cry in my wonderful husbands arms. I could not face life without him. It's the rapid changes of feelings and symptoms which are so DEPRESSING! And of course, that is the meaning of the word: inability to handle sudden change without feeling deficient in some way - then, down and down you go. Stop! It's taken 10 years to appreciate the beautiful things by which I am surrounded: a wonderful husband who only want the best for me, beautiful surroundings (the Cascade Mt. foothills) and my African Grey parrot who asks constantly "how are you doing today?" He knows when I am about to burst and goes into a song and dance act which has me crying with joy.

    We are here to read your posts any time you feel it is necessary to connect

    with caring human beings. Our love is with you.

    JennyR

  • Sleep, 4 hours maximum at a time for me. It was very hard for me to admit my work was not up to my standards and was getting worse. Hard not being seen as a "worker" anymore but after a while you do get used to it. Exercise is key,I do whatever I can do, even on the bad days. Lots of exercises can be modified for sitting down. Use simple things for weights like canned veggies or small weights. Need that upper body muscles strong to pick yourself up when you fall.Lots of great DVDs out there to help.

    It also helps improve my moods to see what I can still do and not concentrate on what I can't do.

  • I hope I can get used to not being seen as a good worker. It has always been a source of great pride for me , knowing I was a good nurse. Funny thing....Pride, I believe is one of the seven deadly sins. seems an odd thing to me but whatever...lol.

    You are right about exercise, I know it to be true, difficult to do sometimes. I appreciate your suggestions and certainly i am going to keep them in mind. Thankyou for reminding me....seems I need lots of reminders these days.

    and thankyou for taking the time to read an respond to my post.

  • It's me again...

    Work ro me was always my identy. I always thought I was the best. My boss told me I was slipping. To make a long story short I went out on disability about 2 years ago. I had written instructions on evrything I did and train everyone. Ater a coupke months went by, I went by for a visit. It's funny how if my work was slipping, they were frantic to see me come back, even part time.

    So what is perceive to be not up to par is much better than hey though when u r gone!

  • You might want to try Sam-e for a couple of months..you might just find that the blues just disappear so you can function again. I visit a doctor of Integrative Medicine and he has taught me so so much about curing things naturally. I started with 200mg in the am and 200 mg around 6pm. If you take too much, you could feel anxious so experiment a little. Swanson's makes an inexpensive one for 14.99 and Vitacost.com has the NSI brand, same price. Everywhere else it costs a fortune. Then you may also want to try 2 T of raw, unrefined coconut oil in the am and 2 T at night. IT's wonderful for parkinson's. Takes away the tremors. If you see any blogs that says it doesn't work, I think those people were not taking the right dose. Good luck!

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