I am a few weeks new to this site, but not totally new to PD. I did not start to give in to a diagnosis until the fall of 2012 when I could no longer ignore the difficulty with twirling spaghetti on a fork, putting on a belt, tucking in my shirt or buttering toast, etc. Looking backwards I have traced my no swing arms when walking to my earliest indicator (around 1990).
I have found this forum to be a wealth of information and I have learned a lot about my ON/OFF situation, (I am currently at odds with). When I was introduced to C/L 25-100 a few years ago, I thought I had my life back and I could live with this. Then, 6 months ago, the CR 50-200 at bed time helped the early rising (somewhat).
Now, I am reading your posts to catch up on my future. I identify with many of your stories and even though it is hard to tell that I am smiling, it is nice to meet all of you. I have never felt more informed and scared in my life. Maybe, someone could share their secrets or at least the secret handshake to this mysterious disease?
M
Written by
CivilMatt
To view profiles and participate in discussions please or .
The secret to Parkinson's is no one can tell you what is best for you. You must blaze your own path. I cut my path for 9 years before i cut out of the woods into the clearing and i have been back into the woods a couple of times since then. I keep my bush knife sharp for the next time.
Well, this ON/OFF is really confusing me. I can do well and be consistent on my schedule and wham, I am off. It just isn’t easy, but when I am on, life is good. Thank you.
Are you avoiding protein at your C/L dose times? Eating protein can result in C/L not being absorbed into bloodstream. But everyone is different. Some have this problem early on and others much later. It's easy to do a trial run to see if food affects your C/L.
Also there's what's called "dose failure" where the pills just sit in your stomach and don't move to the intestine to be digested. Could be due to gastroparesis--slowness of digestive system. We all have a slowing of digestion as we age but could be worse with PD and aggravated by constipation. Or it could be the acidity of stomach is out of whack. These are 2 possible explanations I've heard.
Prevention--take pills with a full glass of water to get the stomach going and hydration for regular bowel movements.
Treatment (possible)--drink a carbonated beverage, even a small amount. It's fairly reliable for my husband. We've been told that orange juice can have the same result but it doesn't work for him.
I am watching what I eat and the timing of meals, but the perfect sequence alludes me. I will take your recommendations and incorporate into what I am currently doing. These little hints may hold the secret for me (which I need).
Welcome, The mystery of PD lies in it’s innocuous name. Actually, the disease is not really mysterious at all. After researching Mayo Clinic sources, Cleveland Clinic sources, and Googling other sources, I understand Parkinson’s to be named after the investigator who discovered the neuronal degenerative Disease, originating in the substantia nigra area of the brain, some referred to as “paralysis agitans”. Victims of this disease all have variable signs and symptoms. Stages of the disease are dependent upon the diffuse neuro-degenerative processes within the brain ( where and how many neurons / Lewy bodies are affected ). My PD symptoms started with taste and smell. I had both essential tremor, and later, resting tremor on one side. Then, slowness of walking, with loss of arm swing. Tremor spread to both sides, later, along with stiffness and then, later, rigidity, in all 4 limbs. Now, in the third stage, my autonomic system is affected, with dysphasia, constipation, etc.. The neurologist thought that I’ve had this for about 8-10 years. So that’s about all the “secrets” I can tell you. The progression is different for everybody. Some people are lucky and live most all of their lives just being mildly affected by the neuronal degeneration of PD. Exercise is very important, for PD patients, in my opinion. Good luck to you, and may the odds be forever in your favor!👍
I’m so scared at times I have given in to copious crying. It helps the depression I think. Always in the early hours just after waking and trying to get to the bathroom . C/L starts the day around 5 am. Once it has kicked in and can take an hour, I am at it and rushing around trying to get a days work done before it wears off.
No longer can I assume it will be a good day. Appointments have to fit in with my On time and that’s hard to guage. If they coincide with Off times I have a driver..........my husband.
How to help you I don’t know and wish it was as easy as trying all these suggestions these Forum Voices suggest ....it isn’t because we are all unique.
It’s a lonely battle.
Social support though is crucial and I have many visitors although at times even that is a hindrance and I just want to be alone ..........
The challenge to work (or even move) during my off times is almost insurmountable task. I am still trying to work and projects which took days, now take weeks. I am getting close to hanging it up, but then I feel good and life is great. I was just telling my wife that I thought things would be alright and now I feel like a countdown has begun.
Don’t get me wrong, I am not giving up and I am still on the happy side of life, but I am quickly coming to a realization of the PD ramifications.
Where do you live and how long since this ‘unwelcome companion ‘ been with you.
It’s not important probably ....I’m just being nosey. I live in Australia and its been 13 years since we were 3 in this relationship with my husband. I call it Camilla .
Did I really say that. Only 2 now . A Widow. Camilla and me. (Or should that be Camilla and I.). Camilla is robbing me of coherant thought at times. Life can be ugly eh!
It is a disease process, and it can be scary! I sometimes, have a fear of the unknown. Like, what is the next symptom going to be, that has changed my life, and not in a good way!
I haven’t put foot to floor yet but always the same , struggle to bathroom . I hang onto everything within grasp. Feel so much better once Face freshened and teeth cleaned.
Then push myself to the kitchen with the walking frame, still not in full gear , feed my cat, one hand steadying me and some times I get stronger and stronger and sometimes I stagnate until Madopar at 4.45 or 5.00am which kicks in within 20minutes. Usually shower then unaided, do my housework until I slow down when I take meds again.This could be 4:5 hours away. I wait until I need it. It takes longer though unlike first dose, to kick in most times. I put it down to Food Intake. Haven’t worked out which but suspect Milk . I have Cereal most mornings and Tea or Coffee with milk.
Have added Xadago to the pill regime and definitely feel better generally. No more dizziness, numb face, Dystonia little Dyskenesia.
It’s a battle and I try not to read these forums often. My prescription was 2 Madopar every 3/4 hours. with Madopar ER on going to bed. The Dyskenesia woke me during the night which was diabolical so decided to reduce my doseage to 1 Madopar when needed and none at night.
Sooo much better . I have had though horrible falls the last one was before the pill reduction. It’s still a real threat but overall I’m quite chuffed at my improvement.
I’m on my own since death of my husband 8 months ago and my doctor, family want me to go into nursing facility where these falls can be monitored.
I’m heading that way within the next few weeks.
It will be Low Care but peace of mind for all concerned. I’m 72 and had PD diagnosed at 58.
This is the best I’ve felt since regression about 4 years ago.
I’m over taking extra ‘pills’ whatever else one might swallow, consume which may help. It’s just Madopar and me.
My day has started so over and out and all the best to you all.
Hello, thanks for your reply, Bridielena! You have my condolences on the passing of your husband! This must be very difficult for you to deal with. I am 72, also, and having to deal with PD issues, that make living difficult! Hang in there, and you will soon be getting the help that you need! Falls are hard to deal with, and if one is alone, it is not a good thing. Wishing you the best! I sincerely hope that these plans all work out well for you, and your needs!
Yes I’m looking forward to moving in to this lovely place.Im moving from Tropical North Queensland to a mountain area where their are 4 seasons. Queensland where I was born and raised typically has 2 seasons, The Wet and The Dry, both being too humid for me.
I definitely feel better when cool and not sweating all day. Holidays in the Northern Hemisphere particularly during their Winters I revelled in.
Southern Australian States get a good winter and snow.
I’m optimistic and don’t plan to fall off the perch because of PD but with PD. Although the Florey Institute here in Australia has something up its sleeve as they have just gone to the Media with it. Still only numbers and still trialling.
That is so good to hear! I grew up on a ranch, in South Dakota, USA, overlooking the Black Hills ( which are next to the Rocky Mountains ). Since the ranch was on a plateau, overlooking the Black Hills, the views were spectacular! Four Seasons has always been best for me! Happy Trails to you, from an old Cowboy from the Wild West!
Ddmagee1 I have always loved tales from the Old West of the USA.
We my husband and I spent2 months driving ourselves around Montana Wyoming, South Dakota into Canada about 5 years ago. Always said we’d love a cottage in the foothills of The Rockies. Will never forget Bear Tooth Pass driving it in the Winter. We wanted to see Some of the Lewis and Clark trail, site of Custers Last Stand at the Little Big Horn, (because of PD my memory the past few months is leaving me). I have Mental pictures though. We stayed for a while in Virginia City which I particularly loved and where I found my favourite CD of Cowboy Songs. It’s 1 of only 6 CDs i’m keeping to take with me to my new home. I sleep in a night shirt from Yellowstone .
Deadwood has so much History.
I’m feeling overwhelmed with sadness now as I remember so much but can’t put a word to it. Driving on your highways was awesome. Salt Lake City was the first touchdown after leaving San Francisco, then to Helena over the awesome Rockies, picked up a vehicle and now all I have are beautiful memories.
Seems we have something in common apart from PD. PD wasn’t a burden then. It hit its strides after we returned home from Seattle via The Oosterdam a Holland America shipping company.
It was quite a holiday and I’d do it tomorrow without hesitation if it weren’t for the threat of falls.
Today I’m being picked up and taken to lunch so I must get ready. You know females, we need lots of time and PD could throw a spanner into the works.
Thank goodness for friends.
Again Happy Trails as I listen to the calls of our nocturnal Curlews . Next cry will be our Cookaburras heralding the Dawn.
Thanks for such a nice reply! I was born in Deadwood, South Dakota, and my Dad worked at the Homestake Gold Mine there, in Deadwood, at the time. I have lots of stories to tell from the old west! One of my relatives was with the Kit Carson gang, back in the early days. My great -grandfather was the Sheriff of Belle Fourche, South Dakota, and brought law and order to that wild west town. There is a museum in Belle Fourche that tells his story, and has artifacts. To this day, the July 4th Rodeo parade, in Belle Fourche, South Dakota, is given, in his hionor, with a banner, at the beginning of the parade. He was responsible for cleaning the town up - getting rid of outlaws,and bandits, and turning it into a decent place to live!
I have just read where you are classical trained. As much as I love some Classical pieces I enjoy a wide range of music. You must have had a wince when you read my love for all things Cowboy.
I’ve told family I want Cattle Call at my funeral.
I was asked only last week where in Europe have I emerged as I do love Polkas and Yodeling......but then I’ll listen to The Second Waltz or Helmut Lotti and Tiri Tiri Tomba.
Must have a Fix now. Still in bed but my music system is with me 24 / via utube and my iPad.
Indeed! Music does heal the soul! Even though I am a professionally trained classical musician, where I've had a good career, earlier in my life, all kinds of music interest me! In high school, I played tympani in the orchestra, and drums in the band, and I, also, played drums in a rock band. I always enjoyed Roy Rogers songs, growing up. "Tumblin' Tumbleweeds", was a favorite, because that was how it was on the ranch. My wife and I used to sing in classical concerts. We were soloists in Handel's " Messiah ", and sang duets quite often, in different venues. My wife is also a classically trained musician, a soprano. I taught voice for a number of years.The main thing, though, is that I love to promote a love for the joy of music, for other people. Out west, we used to have square dances every weekend, and I was taught how to call/lead those! That was a lot of fun! I like polkas, coming from a Polish neighborhood, hearing that all the time, on accordions. I haven't tried yodeling yet. I believe music can be very therapeutic, and studies have shown that it is helpful with chronic ailments, like PD. So, I've carried on enough now! Anyway, that's my background, and PD changed my musical life, in many ways, so that I am no longer a performer, but just an avid audience member and music fan! Enjoy music, and let it lift you up from the confines of PD, and give you joy and hope!!
It was 2012 when the symptoms started to take over daily life functions. I was in a meeting and my boss noticed I was taking notes at a snail’s pace. I had been having difficulty with my arms and blamed it on strained muscles. I believe the start was in the early 90’s when I quit swinging my arms when walking.
I live in the heart of the Willamette Valley in Oregon, USA. Currently, I am doing battle with trying to figure out and control the ON/OFF cycles. If I can do that, life might be more manageable.
This site has laid bare what will probably happen to me and I want to think there is more I can do.
I’ve had it for a long time. The days vary and never perfect.
I believe I won’t worsen. Enormous stress I have been under since my husband suddenly died in front of me with a massive Heart Attack.
He’s left me with nothing after Gambling it away. Thats the stress I’m talking about.
During these past few months my Dyskenesia became intolerable waking me up at night which it had never done. My shoulder was copping a beating.
I was on Madopar 125 all day and taking as many as 8 daily plus 2 Madopar ER on retiring.
I’d had enough of being jerked around like a washing machine. Had to cut back the Madopar
Best thing I ever did. On 3 only and none at night.
I’m helped with Sifrol ER and Xadago.The Xadago has just been introduced into the mix. Maybe the Xadago is the catalyst.
I have more energy and find household tasks easier and I’m actually enjoying those mundane tasks. The dizziness and numb face are in the past as Dystonia of my feet.
Not medicated at night so its taxing when leaving the bed in the morning. I sleep well but wake about 3.30/4.00 am . I wont start with meds until 5.00am. It kicks in fast about 20 mins. Mostly I am getting 5 hours ‘on’ time now. Sure I can’t run or climb trees but I’m coping.
My balance hasn’t improved though and have had many many falls. Last one I smashed my forehead open requiring 7 stitches and 3 massive black eyes about a month ago .
Why I haven’t broken a bone is a mystery. I must have very strong bones of which is a conundrum because I’m supposed to have Osteopenia.
My Neurologist told me I could play around with Madopar doseage so I have. There was a time several years ago when I was on 10 daily. Too many according to him. I haven’t spoken with him for a while so he doesn’t know the outcome of my decision. We Skype as he’s in a major city and I’m 3 hours away in the country. I’m not afraid anymore just more careful where I put my feet. I take a stick with me everywhere .
I’m over trying out all the extras you see in this Forum. One could spend the rest of one’s life pouring over ‘maybe’ and before you know it the world has passed you by.
I’ve got a life to live void of all the ‘maybes ‘.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Mannitol, A Life Changer for My Husband... Our Story
New Here. My YOPD story.
My Hope Pantry
Great reaction from my nuerologist...
My story chap. 3
