A Day in the life of


#1
Ezinder has posted a link about a day in the life of the helpline at Parkinson's UK however, I would be more interested in hearing about a day in the life of anyone of you that has Parkinson's.

We all lead very different lives and I for one would be very interested in hearing a snapshot of what a typical day is for you....

#2
parkinsons uk helpline teamwork very hard during the day,you would be very shocked how many calls they recive in the day,from comfort and surport to resurch and advice.there is so many new members joining puk forum as we can see,but also there is so many more who dont no about it and have been dx with pd.i no caroline you have not asked for this kinda post from me,but i just thought i needed to put how i felt about puk.anyway back to the original thread a day with me,well after having a bad nite with pain in legs and back,or nitemares i then start a day of not being able to get out of my bed with out a frame and the monkey pole to hold on to.carers are with me 4 times a day from a agency and a neibour is to hand also and me daughter if not at work.i have shower ,brekie ,meds,creams with carer then im alone till a nother person comes i have a pendent around me neck so i can press if need be for help.i get very lonely during the day between carers coming,i can get depressed easy.my social worker has set up surport for me to go shopping with carer once week which i enjoy.i walk with two sticks or have me mobility scooter,or my wheelchair.i can not say all me days are terrible,cus i do try to have a laugh and push me self so much ,well as much as me body will take.

#3
OK, Shall I start you off?
A day in the life of an Inclusion Officer (with PD)

Yesterday
7.00am – up, breakfast , shower, get dressed .pills (Requip XL, Azilect, Omeprazole)
8.00am – arrive at work (luckily 5 minutes away), turn on PC . Start report (using dragon software)
9.00 – School visit to observe a new child.
Observe for 1 ½ hours, write up visit report in situ.(writing is ok today)
Give strategies to support child. Complete referral forms
11.00 - Back at office, update spread sheet, start to write report.
11.30 – Chair team around the child meeting.
1.00 – Continue writing report (whilst eating lunch)E-mails.
2.00 – Deliver senco training (30 people)
5.00- home, clear up kitchen, cup of tea (bliss)
6.00 – make dinner, feed cat,
7.00 – Relax in front of TV (whilst planning for tomorrow’s meeting at 9.00am)
10.00 – Bed to read my Kindle and Pills (amitriptyline)
11.00 – Sleep.

#4
i would give anything to go back to work,i worked in a infant school ,and looked after me poorly dad,full schedule for me .but i would have it rather than pd for 12 years

#5
hi caroline, you are really lucky you can still work i have had to give work up i was a community healthcare assistant working with the district nursing team which meant i took blood, blood pressure, dressings, almost everything the staff nurses did and i really loved my job and was devistated to have to give it up, a typical day for me starts between 6-7am take first meds of the day takes about an hour to an hour and a half for my meds to kick in so i find it impossible to function in the morning then once they start to work its in the shower and dressed then depending what day it is monday its hydrothereapy, thursday tai chai, as i am a member of my local pd branch and there is always something going on, if nothing going on that day its usually a bit of house work inbetween having a rest cant do to much in one go get very tired,then may do some knitting my hubby makes most of the meals so i dont have to do that and then i just potter in the evenings doing odd jobs like a bit of ironing and maybe some more knitting then bed, not very exciting i am on the committie of the local branch so i do have more to keep me busy and thats my day. sue

#6
Hi Caroline: The day in North America is only a few hours old, but the following is taken from today's blog (www.wpgchap.blogspot.com) describing my morning walk early this morning. Fortunately, it is only the second time it has happened in the 2 years since diagnosis. Thanks to my medication (amantadine and mirapex)most of the time my days are normal, other than my voice which has a Fran Drescher quality to it. I do detest that ol' PD.

Anyway, here is my account of today's incident.

"It happened again! Second time. I could not control my walking. I started out at 4:30 AM and decided to take a different route. After 20 minutes, I felt like I was leaning forward and my footsteps were just enough to counter a possible fall.
Now, I know walking (running) is just a form of controlled forward falling, but normally one can stop whenever one wants to, but this, this was alltogether different. In spite of my desire to try to walk upright, I continued to bend forward and my feet began to act on their own. My strides became shorter and shorter and I had to walk faster and faster to keep from falling forward.

At one point, I had to break into an ugly little jog to remain on my feet. I grabbed at a pole, the kind of plastic pole that sticks up from a fire hydrant, but I couldn't stop moving as I circled the hydrant like a man possessed. Fortunately, there were no spectators, it being so early in the morning, for they'd have thought me a drunk.

When I finally stopped my orbit of the hydrant, I rested for a couple of minutes and began a slow walk home, without success. Again I was bent forward and my walking steps turned into the devil's jog until finally, after crossing a road, I pitched forward into the snow, where I remained for several minutes before getting up and going to a nearby bus stop where there was a bench to give me some relief. Again, fortunately there was no audience. I was still a half mile from home, I'd forgotten my cell phone; otherwise, I would have called my wife (who was home sick) or one of my kids, to pick me up. Alas, that could not be.

With maximum effort and determination, I chose a slow shuffle to the next bus stop and its welcoming bench, rested and then made the way home without incident. However, the effort required to prevent falling while removing my heavy winter clothing made balancing on a bosu ball seem simple - a piece of cake - as "they" say.

I was fine after a few minutes of relaxation reading the morning paper. Nobody was awake to see me, which was good, because I must have looked like Bram Stoker's description of the Count.... deathly pale, just like a waxen image, and the red eyes glared with the horrible vindictive look which I knew so well....

And vindictive I must have looked, for I have an aversion to not being in control, not being able to walk properly and I tend to blame it on PD.

I remember a saying by Confucius to the effect that our greatest accomplishment is not in our falling but in our getting up every time we fall, or something like that. You get the picture.

I don't!!"

#7
Hello wpgchap.
You Sir have my total admiration, the description you give of the terrible
battle with BlackheartPD , the creature within matches my own as if by mirror.
Today I awoke at 6.10 am ,95% Paralysed , I needed to get to the toilet, fast.
Using my remaining 5% I crawled to theloo, "looks like a proper word that so ill leave it" as I was saying , its only about 3 mtrs from bed to bathroom but it felt like 3000, oh I have all the bottles and other quick fixes but some how that knowledge does not have enough clout to awaken the Parky Afflicted brain and the poor old 5% that was barely operational had been trained over the last 62 yrs
to focus on ,need loo must get there at any cost, I am confident that my last surviving brain cell would , on Auto cruise , get me to the the last bathroom standing on this planet 20 mins after its complete obliteration by two 70 mile wide Asteroids, I digress, Anyway I made it ,just, might I enquire is this a problem you are familiar with . I took my drugs and after a slow recovery, by
10am I was at 90%, and ventured out to the Newsagents the the café nextdoor all was well with the world, I do need a Mobility scooter to get around now, oh and a stick , the latter turning the unstable bi ped into a much steadier tri ped " is that a word" incidently do you have access to one of these scooters , excellent little machines I am planning to insert a 1.9 Turbo Diesel into the engine room of my sloth like minimini that should improve on its 10 mph somewhat.
The rest of my day uneventful until now , im shutin dow musd take madpa.
20.57 PM Northumberland UK
wil conctct agen fedex KINDESSD REGRDS:rolling_eyes: