I find that the two most important factors for managing PD are titration of meds and exercise. To help with the titration, I've come to realize that the neurologist is largely dependent on my feed back. To help provide accurate information, I've created an Excel spreadsheet that lists all PD symptoms (along with medical terms and definitions). I record minute changes in the progression of the disease - nothing is insignificant. This includes reactions to meds (I.e. Dyskinesia, dystopia, sleeping patterns, change in med times, etc.). I has found a useful phone app called HealthCare that helps record and share information about PD and logs the taking of meds. I still struggle with consistency in everything I do and that reflects in my exercise program. I think PD has contributed to my inconsistencies. Does anyone else feel like a failure in being consistent since diagnosed with PD?
UCSF has provided excellent care for my P... - Cure Parkinson's
UCSF has provided excellent care for my PD for four years.
Hi Joeda. Yes! I am amazed at how inconsistent I am when writing. I often start using numbers and then change to words, when talking about distances etc. For instance, I will say,"I walked 8 kilometres today, and it took me sixty-five minutes. Why change from numbers to words, in the same sentence? I can only print in block letters, when writing by hand, if i want anybody to read what I am writing, including myself. But every now and then I slip into cursive writing, which is totally illegible. Why do I do that? Do you find the same thing?
John
I responded to this earlier but I don't see my response below so I am re-writing it because I found your reply interesting. If you have already read my response, just ignore this one.
It is very interesting that you have chosen the more complicated forms of writing for the longer numbers/words such as in kilometer (vs. kilo) and "sixty-five minutes" (vs. 65 mins) and used the simplest form for short numbers like the number 8 (vs. sixty-five). Is it possible that the rhythm of the writing is soothing or cognitively stimulating? Just a thought.
In any case, very interesting. Wish I had an answer. Thanks for sharing.
Hi Joeda. The numbers have everything to do with inconsistency, I don't understand it myself. As for the Kilo, I am more explicit on this because not all readers live in countries using the metric system.
John
I struggle with being consistent also. I am all over the place with everything. I start to do one thing and before you know it I am off doing something else. I have great intentions all the time , too bad they rarely happen. I feel like i am busy all day long and get very little done. I ask myself how can this be?? I cant sit in one place for more than a minute, my body hurts all the time, I cannot sleep for more than a few hours as it hurts too much to lay in bed. Inconsistent is putting it mildly!! I am quite sure it is my own fault and I tell myself I need a routine . If only I could adhere to one.
I've just spent the past 30 mins replying to this post and it's just disappeared aaaaaaaagHhHH! Can't do this anymore...I agree with all you said.same here sorry
Hi marmaduke.... I know just how you feel . I sure do wish I had been able to see that post! Somehow I know it was a good read!!
I wish I could have read your reply. Would love to hear your response if the writing mood come back. Thanks for taking all that time to respond.
Yikes. I lose what I am writing all the time,! My desk top.has a 'save' button, but not my phone.
Gosh~I finally found someone who can relate to my world. This is exactly how I feel.
Hello Gagirl63
Seems a terrible thing to say that one is glad to know they are not the only one who has such life altering issues daily. It can wear on a person after a while and I don't wish it on anyone. I do take comfort in knowing that some of these inadequacies are not my imagination nor specific to just me. I feel a little less crazy now and believe me that is more significant than I can tell you.
I find PD a lonely condition to be in. That's probably not grammatically correct but I can't think of a better way to say it at the moment. I'm so happy I stopped back to visit this site for it has been a long time since my regular visits here. I kinda think that back then it wasn't real for me.
The truth is reality has been here a while now and my denial is no longer an option. I still hide it well at least I think I do. It's a struggle living inside yourself , I become tired of wanting to explain myself so that someone might understand me. I don't like thinking less of myself and don't want others to either.
But as I near the end of a long reply and I apologize for that let me just say your comment...it helped!! Thank you so much!!
Thanks for sharing. Inconsistency is my hardest struggle by far. Pain affect my consistency, too. I just wish I could get a handle on it. My physical therapist's father had PD. He was specialist in gum diseases. He finally was hospitalize because he had a infection in his gums. If a periodontist can struggle with consistency in brushing his teeth, I think I can learn to cut my self a little slack. (By the way, I have a calendar prompt that reminds me to brush my teeth.)
The spread sheet is a great idea. I m a quilter / craft show artist making one of a kind quilts/projects I never make the same thing twice, good thing I would not remember how to create the same thing. Consistency is a hard one for me also. Parkinson is not an easy constant! I would not say your a failure since you made it to the computer and posted here. My problem is words, the conversation can be moving along great then I turn my words around, in my mind the words were correct, they just did not come out that way. SO frustrating to see the all familiar look of confusion and a persons face, when they try to be polite but have no idea what I said.
Kadie, You say you're a quilter. It's a fascinating thing to do, but can you still do it? I've made many quilts, one each for my four children and seven grandchildren and some to raise money for a local hospital. The last I finished about six months ago, but the tremor that's been developing for a few years now makes me so exhausted I hardly have the energy to look through my boxes of fabric, never mind get the sewing machine out. And there's a new grandchild on the way.
I'm waiting for an appointment with a neurologist, I seem to have many symptoms of PD, but no diagnosis yet.
I have to choose when I sew. I had DBS implants 4/2012 and after that surgery I got motion sickness from the needle on my sewing machine. I was beyond upset. About 2 months it went away. I make myself do things, these days my eyes don't work well. SO I wait out the meds and go back to the sewing machine. I ve been making aprons- Adults two sided with pockets, kids with matching doll apron. I have a craft show booth Sat Nov 15th, with out my friends to help me, I would never be able to do this. I suggest a sewing room set up to make it easy for you to use. I could never set up all the time, But I have a sewing room LOVE IT!
p.s have you been tested for Lymes Disease (deer tick) that is what started my jounery
Kadie, I'm so glad you're still sewing! I do have a sewing room, but it's in such a mess, because two months ago I had Botox injections in the back of my neck to try to control the tremor , but resulted in having my chin on my chest, and unable to lift it, and dizziness because having my head in that position affected my inner ears. So I've been doing as little as possible, just trying to keep my head still. But it is wearing off now, and you've inspired me to think of the next quilt. Even if all I do for the next few weeks is think about the design, and make a start on tidying my room. And deciding what fabric. I love silky and velvety fabrics. I do hope your craft show booth is a success!
Jane
Thank you. You are doing the best you can, inner ear trouble is the pits. But just to feel like you want to do is a start. Good luck! Happy Quilting.
To patchworker
That's terrible what you are going through. How do these things happen? Does the doctor tell you of such an outcome before he sticks a needle in your neck??This is why I cannot even consider DBS although it has been suggested to me several times. It's the "oops" factor , scares the you know what out of me!
I hope you continue to improve and can get back to those things that you so enjoy. Hang in there!!
Thank you mccshe. I was told it could happen, in with a long list of things that just might happen but very rarely do. But not the added complication of inner ear problems.
I can understand you being very wary of DBS. The thought scares me too.
But it seems it helps a lot of people.
I can relate to the botox shots. I have Botox shots in my legs and feet; nothing I look forward to when I visit the neurologists. My feet and hands curl. I have read that the curling (Dystonia) is one of the side effects of Sinemet (carbidopa levodopa). I know nothing about designing a quilt, but I like to Digital Designing things; it is my way of keeping mentally active. I would love to hear about the design of your quilt.
Joeda, When I was young I used to make my quilts lots of different ways , but now I find they're much too big to move around and get under the sewing machine. Too tiring. So I make nine big squares, or sometimes twenty five small squares, and sew them together by hand at the end.
The pattern on each square,is usually one of the traditional designs, like "log cabin", and it's repeated on each square. Next time I'm going to do each square in "crazy patchwork", with a black velvet frame round each square. I go round the charity shops and carboot sales looking for old party dresses etc. to cut up. I don't cut up things in good condition, just stuff that's already torn and stained, I carefully wash and save the good parts and bin the rest. I love shiny satins and silks.
This is a very long reply, i hope I haven't bored you.
Your creativity in the details sounds incredible beautiful. I am amazed there is so much detail in each square. When you say you design a traditional, "Log Cabin," on each square, do you mean you sew a pattern that resembles a log cabin shape or does the material create a photo-like picture of a cabin? The richness of the black velvet and the shiny satins and silks must be stunning. Do you create your quilts for yourself, for family members and friends, or do you sell your quilts at craft shows? I'm am curious as to how long each quilts takes to make on an average. How long have you been quilting? This is a very interest skill. I would love to hear more.
Thanks for sharing, patchworker.
"log cabin" is the name of a traditional design, found in patchwork quilts hundreds of years old. It's not a picture of a cabin, but strips of fabric put together as logs used to be in a cabin. "crazy patchwork" is also a traditional design.
Each quilt takes about six months. I've been making them since one of my seven grandchildren asked me to make one about fifteen years ago. Then all the rest of the family wanted one! I make wall hangings etc. as well.
I feel guilty talking about pleasant things here!!!!
I've just remembered I made a quilt 60 years ago! When I was seventeen! I asked all my friends and family for a little piece of fabric and embroidered their names on it. Including a boy I was in love with at the time. He tore off the tail of his RAF shirt, it was the only fabric he had. He was Conscripted into the RAF and stationed near my home.
I think all this interest in patchwork quilts started when I was a child. Our house was bombed during the second world war, and we lost everything. We were given two patchwork quilts from some incredibly kind people in America, part of an Aid parcel. I wish I could say "Thank you" to them!
I am not sure what you meant when you said you're feeling guilty about pleasant things. Hope I was not getting too personable.
The things we remember from our teen years! Amazing how pieces of priceless clothes, given so compassionately, becomes a "patchwork" of memories that run deeper than a country well. That very first quilt, with memories of love and war, must have seeded the birth of your great love of quilting.
Thanks for sharing. I enjoyed immensely.
Joeda, I just meant I feel guilty about taking up space on this website, which is meant for people to try to help each other with problems with PD, not for old ladies to remember the past!
This was my first post so I think I did not think beyond becoming interested in your quilting. My bad. Again, thanks for sharing. Very enjoyable.
Thanks for the encouraging words, Kadie. I know very little about quilting but I love to admire the beautiful work of those that can. I have a quilt that my grandmother made for my mother and it is made of all the materials she had on hand at the time of its making. My mother can tell me about every little piece of material and it is like a window into the history of my grandmother. Thanks for sharing.
I believe that PD is an external manifestation of PTSD. These posts only tend to confirm this to me. I see this in myself --even before PD -short attention span, fearful easily, runaway-run back. I am considering some research about this--I would call it "Inside Out" if it was ever to put it into book format. What do do you all think? I was in the psychology field for 30+ years and worked with it myself for many years.
Very interesting perspective. I have been following Ruth M. Buczynski, PhD, President and Licensed Psychologist, The National Institute for the Clinical Application of Behavioral Medicine. She does a lot of work with Mindfulness and reconnecting with the peace within in helping people with PTSD. I believe there is also a low dopamine connection in people who tend to be affected as it has recently been found in people with ADHD. What is fascinating is how finding that peace within instantly reduces tremor in my husband and provides a sense of calm and relaxation and healing in everyone. In my practice as a Clinical Nutritionist and Wellness Coach I feel helping people develop the practice of finding that place regularly everyday (even better multiple times daily) whether through meditation, prayer, Heart Math, Yoga or other practices, results in resolution of many difficult to treat conditions along with them naturally making space to eat better, move more and stress less. Would be interested in finding out more about what you learn.
you've got it!!
Never even crossed my mind. However very intriguing. I would be very interested if you need any assistance with your research. Be well!!
I suffered from PTSD after spending a month in a hospital ICU on a ventilator. That was five years ago. Since then I've developed a tremor, which is now quite severe, and I'm waiting for an appointment with a neurologist. You might be right!
I too have created an Excel Spreadsheet of the 100+ PD Symptoms. I would be very interested in receiving your information. If you or anyone else reading this reply would like to receive my list, simply send me an e-mail to macbunch@Hotmail.com Please put 'Symptoms' in the title.
I also include a separate page of "How to Use the Symptoms" chart which shows the many features built into the page.
Thank you,
Charsie
Charsie,
I just sent a template of the chart. The definitions are on a separate tab. Would love to see your spreadsheet.
Wow , this is way out of my arena, I do not know how to begin a spread sheet . I would be very interested to try this. Would you offer me some tips or methods?
Joeda,
I too find tracking of my husbands symptoms and also behaviors that make the most difference like exercise and hours slept very helpful and also motivating to get back in the groove when life gets in the way and he sees the increase in troublesome symptoms. I've kept it simple for him so he doesn't need to spend a lot of time recording . (He doesn't have a SmartPhone and is on the computer all day at work.)
You are very wise to keep it simple. Does the neurologist appreciate the information? I find it the best way to keep track of what really is going on with my PD. When I do not chart results, I am amazed at how much I forget. Thanks for sharing.
Is it possible to receive a copy of your Symptom and Drug Information? IF so, please send to:
macbunch@Hotmail.com
Thank You,
Charsie
Oh, it is so glad I am not alone but no one seems to understand. I can go a week with no problems then I'm off. I try very hard to keep consistent.but life just keep getting in the way. My family and friends get very upset and I can't explain. It can be as the time of day I exercise or I am 20 minutes late with my meds. It can lierally throw off my weeks.
Now that sounds just like me. Sometimes it helps to make a schedule to brush my teeth, fix a salad for dinner, or something very personal like read my Bible and pray. Simple things like these take really take a strong resolve. I would love to be consistent is some very simple things. Thanks for sharing.
Joeda,
Your contributions to this post have been so helpful to read. This comment in particular struck me. I completely get everything you mentioned here. Whew...it's tough but we'll keep on trying?? What else can one do...but it does really help a lot to know there are those who do get it and understand. Thanks for sharing!!
I am going to check this out thanks for sharing
I say.... the most consistent & predictable thing about Pd
Is that it is consistently inconsistent & unpredictable!
I’ve been off this site for several months
It’s nice to revisit, see some old & new participants ....
Still the best site out there!
Thank you everyone for all you contribute !
Be well
C!
Is ELDEPRYL the reason for my PD not getting vorse the last 15 years?
Has anyone started using Doxycycline for PD 
Planks?
Azilect
How i beat Parkinson's
