The other day my wife asked me what people on this blog do all day. I told her I'd ask around.
O.K. What DO you do all day?
What Do You Do All Day?: The other day my... - Cure Parkinson's
What Do You Do All Day?
Written by
Joealt
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39 Replies
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Hi Joe,
I work with in the Media industry in Scotland so my days and hrs are very different , dealing with Advertising and Pr . no two days or two hrs are the same , i cope not too bad some times i have to chill out and rest as my tremors take hold
Al
Jack shit
Thumbpick• in reply to
Hmmmm... one wonders if that's the reply or name of the writer. lol
jernor• in reply to
I just had to chuckle at your reply! Something I might say, but not my wonderful husband, the one with PD.
Normal household chores, but anything I do takes twice as long as it use to...so my days are full.
Recently had company in and out for almost 4 weeks, taking awhile to recover.
Work in construction as a day job, when I haven't got work, I work on my allotment or do DIY at home
depending on the day's allotment of energy, I'll either fold a set of sheets and go take a nap or I'll work on my yard, trimming banana trees, palms, weeding and mowing.
I do try to keep moving and restrict my time on the computer to after dark.
aloha, jill.
I rise about 4am if I haven't already been wake since 1am. Take care of my 7 & 5 year old boys. Then go to work at Pepsi as a Human Resources Coordinator for what I hope is at least an eight hour day. Sometimes I have to travel to different Pepsi locations so I may need to drive a couple of hours first. Then I get home for the nightly routine of making dinner, checking homework, chasing boys into tubbies and reminding them to wash in those nook & crannies, before I finally tuck boys in bed and lay next to them in their bed to say our prayers.
Work full time as an Inclusion team supervisor, managing a team of people. We all visit pre-schools and nurseries with children with a range of special needs / disabilities.I also teach adults, attend meetings etc.
I am in the final stages of a degree in SEN, which takes up a lot of my spare time. I look after my grandson after work 3 days a week till his parents get home. Cook, clean, etc.
Am also in the process of planning my daughters wedding!!!!.
And you have PD??? Im gobsmacked! I know many of us struggle with sleep,but when do you get time?
I am very fortunate because i sleep really well. I have a good 7-8 hours a night which is helping me to keep going. Some days are easier than others but i want to stay 'me' as long as possible.
I have a p/t job, which allegedly takes 8 hours a week, but in reality takes up about double that +. I also volunteer for a local disability charity one day a week, working at their office. I manage the domestic stuff at home, but this is my downfall as it takes me so long. And on a "steady hand" day, I enjoy my hobbies, knitting, sewing, baking and pottering about in my greenhouse.
My mom has End Stage Parkinsons Disease. She is confined to a wheelchair because her Parkinson's Disease has given her severe dystonia of her left foot. She cannot walk. She is completely dependent upon others for help, help in toileting, bathing,etc. She can feed herself and talks well. She is currently in a nursing home and the family want to get her out of there and back home as soon as possible. Mom still has tremors in her hand and her tremors are worse if she gets nervous. She had some swallowing difficulties and she had a swallowing study done so she knows what foods she can tolerate best. I know this sounds very discouraging but she and my family have not given up the fight. We want her to have a very good quality of life despite all the symptoms.
BLESS YOU.
Well joe: It take sa lot of time and energy to do nothing correctly! Basically I sit around waiting for someone to post a good blog and then think about it all day.
then I play Backgammon on the computer while I think of a response. Let's not forget all night too, we don't sleep either. But i try to be useful, until I run out of energy. Usually about 10 minutes after I wake from my "night's" sleep or my daily meditation. what does your wife do with her free time?
Gardening. Estate sales. I'm always amazed at her energy level. She's like a machine
My hubby who has PD sits around nd sleeps a lot. He tries to do things around the house for me like sweeping up dog hair and caring for and playing with our dog..He takes short walks and checks on our elderly neighbor every day. I work part time because I need insurance and won't be Medicare eligible for 46 more months! I only get to check things out here once or twice a day.
Hello all,
Some very interesting comments here.
I have been a graphic designer for thirty years and do contract work from home.
It supplements my disability check but I can't make over a certain amount. My husband is a union carpenter and we have great benefits, so that helps. When you have been in corporate America for as long as I was, it takes getting used to
I can't say I miss it! The internet has changed everything, in my field at least!
I know this sounds crazy. I check the weather befor going to bed to see how I can plan my day. I'm really affected by the weather. I'm up at 5 or 6 , get the husband and kids out the door. Carpool with one kid. Maybe I might do errons. I used to volunteer at the schools but have cut back alot now that my kids are in High school and Jr, high (I'm not needed so much). My kids are involved with sports, that takes up a lot of time in the afternooon and weekends. I like to do projects,but, I just get so freaking tired sometimes that I can't finish what I started. I really miss going 90 miles an hour all day!
I'm retired so I get up around 7 or 8, take my thyroid med, make coffee, load or unload dishwasher, check my messages and watch the tv news until an hour passes. Then meds and breakfast with Kelly Ripa. Feed the guinea pig and do Buddhist chanting. Then I watch The View and check out Facebook, tidy up living room, sort mail, etc. Multi tasking. Watch the news at noon and make lunch. Turn off TV and turn on NPR radio while I make bed, put away clothes. 3 days a week I have PD exercise classes and once a week aerobics. Almost every evening I have a Buddhist meeting or another type of meeting . Which reminds me I have to sign off and arrange a ride for tomorrow with Access-A-Ride! Ciao, lovelies!
p.s. this describes a good day when I am not writhing on couch in pain from dystonia (couple times a week) 
Great question. One I often ask myself at the end of the day. Just what did I do today?
Well, for the first time in a couple of years I cooked dinner two days in a row. I paint awful pictures. I play around with the computer. I think about things. I listen to books on my MP3 Player, I play bridge, I take TaiChi and swimming classes for arthritis.
I talk to my dog, I love my husband, I wonder at the world, I call my children. I get dressed most of the time, I take showers very carefully, I brush my teeth a lot (with an electric toothbrush), I watch the clock and keep track of the time so that I won't miss my two-hour window in which I can eat, I nap, I scratch, I take pills for pain, I laugh at any excuse.
I manage my anxiety through deep breathing and meditation, I go with my husband to our shrink every other week, I keep in touch with friends and family with Parkinson's--trying to keep us all going, I never apologize for being slow--I just laugh and tell them I have Parkinson's and that everyone has something. I try to stay positive because my husband worries about me so. I really do not much. But it sounds like something when I keep punching the keys on my computer. I fight depression.
What do I do? I don't work anymore. I rarely cook. I don't entertain. I don't give speeches or act or run things. I step back in a group, I sit down, I sometimes even shut up.
Well Joe: I guess the real answer is
"We do what we can"
when i can't write, i work out, when I can't work out i do housework, when I can't do that I do this...
I do what I can do. When I'm done doing that I come to this site and hang out.
Wow! What a great read!
Many years ago, I had been given the task of forming a Support Group for a Cancer Ward in the hospital where I worked and had some trepidation about how it was going to go, since the patients were very sick. But it was that experience that taught me how resilient people can be in the face of adversity, what unknown inner resources they can find when needed, finding their way through.
Reading this just sort of reminded me a little of those afternoons - which I miss now that I'm blissfully retired - when I would meet with the patients and their family members and sometimes the staff of that Cancer unit. Collectively, an inspiring read.
Oh! ....and by the way, what I do all day is seize it every chance I get.....which is pretty tough, I've found, when you think as much as I do......
I admire your outlook >
What a great question...and answers. Before being rx'd Mirapex and knowing I have a Parkinsonian condition, I was ill without a dx. for years. I was home-bound and a good lot of time bed-bound. It gotten to where on a good day I could shuffle three laps around the house real slow. I watched a lot of tv as I couldn't read due to my eye muscles.
Then, Mirapex set me moving again...and now a year later, on days my med. works well, I design and make jewelry, and am taking an online class in Interior Design, so I work on projects for that. Often I run an errand all by myself. I dance for exercise a lot of days. My husband and I walk together about two miles, usually five days out of the week.
Some days though when my med. doesn't control my symptoms, I can't take a walk or do much of anything. I remember how hard it is not to be able to do...or to do independently. I'm thankful that for right now, these days are the minority. I know this is a precious time that I have medication working pretty darn well. I'm incredibly grateful for it.
i work full time which gets me out the house, i live alone so i do what i want when and if i want, i am really lucky that pd does not stop me doing anything any other 47 yr old woman does, i have gang of friends the 1st wifes club who are always up to something or one of us is going thro a drama that we all resolve with the help of bottle/or 2 of wine, i put my aches and pains down to my age not the pd... i have tremours but friends and familly dont care im still me.
I have had PD for 15 years and on disability since 2007. I wake up when I want to, nap when I want to and go to bed when I want to. I do Tai Chi and BIG exercises, blog, write, surf the web, watch TV, play with my dog, fill my bird feeders and watch birds. When the weather is nice, I walk in the state park next to my home, swim and interact with my wife.
wordworks2001,
Sounds like a nice life...I am aiming for that very situation myself. I want to enjoy my home , my piano, my cats, the weather ,and life with my husband. And my children , as much as I am able for they are grown and have lives of their own. My greatest wish is to be blessed with grandchildren , what an incredible joy that would be!
mccshe,
Fortunately, when I retired from the Army in 1988, I was lucky enough to find work that paid oodles of money. Thus, I have Army retirement pay and a very nice Social Security income that allows me to be fairly comfortable. I try to cram as much fun into the day as possible, take a short trip or two every year and generally make the best of what has become of my life. I don't look at PD as a disease, I look at it as a challenge.
I love it!! wish I had oodles of money too, I don't...but it's ok.
I also face PD as a challenge.Some people say I should go on disability.One of my coworkers wants my job . She seems to feel that I can't do it anymore. I am a little slower than I used to be, but my boss hasn't complained about my job performance , and although I tend to question my own abilities at times, I am not ready to give up at age 50!
My life to me is enjoyable, despite my limitations! I am grateful for a modest but beautiful home, a wonderful husband, and a positive outlook always!
Thankyou for sharing with me
Like many others ,up a 4:30 , if I haven't already been awake most of the night, and I get ready for work. I am nurse manager at a very busy family practice.
I drive 45 minutes to an hour to get to my job, depending upon the traffic. After that it is go go go till I cant go anymore....usually 4 or 5 oclock. Then the drive home. Often I need to find a place to pull over and sleep , yes sleep, for the side effects of Mirapex make me very very tired.
Ususally 15 minutes of closing my eyes is just enough to get me home. Once, my husband called my cell to ask me where I was. I had been sleeping for more than an hour!!!
Ok, so when I finally get home, sad to say , I am just about done for the day! My body says enough is enough!! Dinner??? well sometimes I can do it and sometimes i cannot. thankfully my wonderful husband never complains and we adjust accordingly.
Frankly , i think having PD sucks, but I know things could be worse. I believe I have two choices, I can be happy or I can be miserable....I choose happy!
Most things are so much harder to do than they should be, I wish they weren't but I carry on the best I can!
My best to all who have to contend with this disease, I know there are those whose symptoms and situations are more difficult than my own. God bless!!
Household chores, pulling weeds, yoga, taking a walk when I have the energy. Surf the net, watch t.v., hang out with my grand kids (they're better magic than any pills)!
Sometimes I go to the local senior center for lunch and card games or bingo. I try to stay upbeat and positive. However, it sucks that some of the seniors that are 15 to 20 years older than I are in better shape! I'm a PWP so, I move slower then they do. Nevertheless, I'm still here and kicking! I'm not going to sit down and feel sad. I fought cancer twice! I can fight this too.
What a great question. Reading some of the answers makes me think I could do more. Here goes:
I always wake early, usually about 4 a.m. If I can't settle I get up and knit. I am making a blanket for my new grandchild due in July (will know pink or blue today). Three days I go to my daughter's for 6.30 a.m. to look after my grandaughter and take her to school. Sometimes I go shopping. Come home. do chores and depending on how I feel, do as much extra as I can. I exercise. Collect my grandaughter, with my husband, from school and bring her back to our house until her mum gets home from work.
One day a week we look after our other grandaughter, who is three and half, for the day. This can be very tiring, but very enjoyable.
The other days usually start with a dog walk, chores, shopping and nearly always exercise.
During the summer we try to spend every other weekend at our static caravan in Wales.
Sue 
since I am so slow it takes me all day to do what I used to do all day.
I have six kids that keep me busy especially because everything takes so long to do lately. Praise God for my husband that in addition to his full time job he takes care of me a ton and also our kids a bunch but i worry about him and the stress level he has to cope with on a daily basis!!! He's been grumpy a lot lately I think because he's stressed about leaving me for the week so I'm hoping the week away will be a good break for him. We do not get much help whatsoever from family -they just say wow what an incredible husband you have and barely do anything to ease the burden which is definitely putting a strain on that relationship but that is partly due to his not wanting to ask for help and admit any weaknesses. When he travels for work next week i'm praying they step up to help because i desperately need it! Praise God he really rarely travels for work like once a yr but he will be gone the entire week. I told them today I would need help and they seemed to say yes they knew I'd need help and would step up but if you all could pray for that I'd most appreciate it!!!! Also I was honest with a good friend about our situation and she started crying so then I felt like i shouldn't have confided in her but now i'm thankful i did. She is like a sister to me but lives far away and she is mailing me a check to pay for a housecleaner for next week so that's a huge blessing !! I'm super glad I honestly told her our situation because it's our truth and It iisn't helpful or healthy to hide it away for fear of burdening others
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