Baffled

Baffled

This illness we call Parkinson's baffles me.

The fact that the it does not go in a straight line, makes it very unpredictable.

I was diagnosed with it in 2004, and had had for 4-5 years before that.

I have done really well on the medications and exercise.

And lately I have been extremely tired, lightheaded and out of sorts.

First I was blaming the symptoms on pd, until I realized I have SAD and usually

get down and depressed after Christmas for the months of Jan and February.

I did this before pd.

It is difficult to differentiate what is normal for me in any given season, and what is pd onset.

I am beginning to not give any of them much attention, and just go one with my day. If my friends aske me how I am, I tell them I am fine.

I am finding that people really do not want to hear what you are going through, because it scares them!

So I take this as it comes, and still keep a good attitude.

I still wish there was this straight line so we knew what is coming. But there is not, and whatever developes one day, may be gone the next day.

I would like to get to know some of you.

Gigantic blessing of joy to each one of you from

Eva Gabrielle, Retired Unity Minister

41 Replies

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  • Yep,, you have got it all correct, except for one little thing. It is all the fault of the PD. Your being tired and out of sorts. My inability to pick up the bill at lunch, and lack of concern to stop encouraging my granddaughters making a huge mess with paint and scissors when they come over or attempt to clean it up. The compulsion I have to go fishing all the time. All the fault of PD. ( or the medication )

    I too am fine, thank you for asking, unless of course they want to hear about my bowl movements or look at my swollen legs. ( is that spelled correctly ?)

    Nice flowers. Are those round things grapes? Gotta go. hint, nothing to do with my legs.

    My philosophy is:

    1/ Life is short at the best, make do with what you got because there is no guarantee of a do over.

    2/ It is not my fault , it is the PD.

    Now I hope you are glad that you got to know me.

    Regards Jim

  • I agree with you that the PD is the cause of tiredness and mood. Before PD I was always happy and energetic but now I take PROZAC for depression and struggle with the energy issue a lot. Recently I have tried to change my thinking from " darn I can't do anything very good " to well, at least I can still do it". It has helped. I don't feel like a failure anymore, it's the PD.

  • I watch my self talk very carefully. What I tell myself, usually becomes my experience. So I remind myself to make myself talk positive, and that usually helps me to feel better.

  • Well put, thankyou

  • Some of me says: I still wish there was this straight line so we knew what is coming. Starting my 3rd yr since dx. I am living and OK with the symptoms w/o meds.

    what is coming?

  • What is coming Roy? Nothing we can't handle:)

  • My 15 years of PD has been a roller coaster with symptoms du jour on a hourly tormenting turntable.. But it could be worse.

  • That's what I keep telling myself: It could be worse!"

  • Every time I say that

    it gets worse

    Don't say that

  • Every time I say I am doing better--I quit doing better!

  • yes, your right , sorry, I forgot about that

  • Hi Stargate. You speak about doing exercise. May I ask you what exercise you do, as it may have a clue to answering your question?

    John

  • Hi John;

    Are you the one that wrote the book on curing yourself fron PD?

  • Hi John Pepper;

    I found your book fascinating!!

    Thanks for writing it!!

    How do you suggest we build up towards the long walks.

    Right now I am barely doing 10 min.

    I have experienced lightheadedness, and have given up on every other kind of exercise, except riding a stationary bike and watching Netflix on my iPhone at the local Senior Center.

    What about Tai Chi.

    I look forward to hearing from you!!

    Thank you!!

    Blessings, Eva Gabrielle

  • Hi Eva. Bearing in mind that we are all different, I must say that the first thing you should do is to ask your GP whether it is safe for you to walk. If he/she says you should have no problems walking then start by walking for 5 minutes in one direction, and then turning around and walking back to where you started. Walk as fast as YOU ARE ABLE! Don't worry that it is not as fast as other people walk!

    Don't walk every day! Walk every second day! Measure how far you have managed to walk in that 5 minutes. The distance may increase after you have done the walk several times!

    After at least every second week, try to increase your time by another two minutes. You will then be walking a total of 14 minutes to begin with. If you feel light-headed then stop to have a rest. This is not a race. It is the beginning of a process of building muscles and stamina. You should start to feel a lot stronger as time goes on and you will feel a lot healthier. Don't be impatient, as you will injure yourself and undo all the good you have been doing.

    When you are walking outwards for 30 minutes, which means you will be walking for a total of 1 hour, that is the limit of your time. From then on, see how much further you are able to walk in those 30 minutes. You will be very surprised how far you will eventually be able to walk.

    Good luck

    John

  • Dear John;

    Thank you so much!!

    Blessings, Eva Gabrielle

  • hi T AI CHI is great for well-being and balance\

    i thoroughly recommend it

    (and it si goo d for arthritis and diabetes too)

    lol jill\

    and a smile to star this snowy day

    :-)

    PSP person in the UK

  • Very well put,, I find that a positive attitude towards life is a must for me,, the exercise is a must,, even when we hate it,,, we still gotta do it,, I am blessed with the good fortune to manage to upset everyone,, at anytime,,, simply by telling the truth,,, "As i know it." That amazes me,, Why would anyone in their right mind care what i think,, or say for that matter,,, After all,, i ajn't right in the head at times,,, and yes the Parkinson's and drugs are to blame, MOSTLY??,,, So how is one to maintain sanity in a universe that is not in harmony ???? ,,, It amazes me when someone ask,, "What are you going to be doing next Tuesday?" "I ain't even sure what i am doing now,,, how could i possibly know what i will be doing Tuesday?"

    I think that is why i have enjoyed the last 12 days so much,,, i am cutting down on all Parkinson's drugs,, trying something better (For Me Anyway),,, and i am amazed at the transformation,,, Life is much better,,, I still have Parkinson's,, i still do things backwards,, can't remember how to get in,, or out,, of bed,, get completely lost in my own house,, (But i think i will probably be ask to leave here soon,, no biggie,, been there,, done that),, But to day i just found the relief i had to have,, sure,, i'm stoned a lot,, It's about escape-ism,,, and i love it,,, no stress,, no pain,, but lots of laughing,,, Life just happens,, I enjoy it as it passes by,, ,,,,,, I"ve concluded my quest for the truth,, Today i will find a new fantasy,,,,,,,,,,,,,, I will make my life good and enjoy the ride,,, Bye Now,,, Love y'all,,,, LD

  • `Dear Stan;

    Thank you for your cheerful attitude. That is the only way to go!!

    Last night I watch a video by John Gray. Yes, he is the man that wrote to book on "Men are Mars, Women are from Venus."

    Has had Parkinson's. He is using amino acid to counteract against the brain becoming immune to Levadopa.

    I will look for the site and forward it to you when I find it.I found it:

    Enjoy!!

    Go forth a shine!!

    Hugs, Eva

  • Hmm do you really think he had Parkinsons? I don't. He called it pre Parkinsons. What is that? Its not a diagnosis I have ever heard before, either you have PD or you haven't. Many things mimic parkinson symptoms, i need more proof than this. It is so easy to claim anything on line and the common factor is they are positive, they play in our hopes.

  • I'd quite like to find post-Parkinson's. I look and search. Most people who have found it want to sell it to me.

    If I find it, I'll give you all a free copy.

  • What am I doing next Tuesday? Most of the things I planned for last Tuesday. Plus a few additions.

    Is that me or Parkinson's?

  • Greetings Baffled,

    Welcome to the club – those of us who “ wish there was this straight line so we knew what is coming.“ PD is known as a “snowflake disease” because no two of us are alike, and it is not possible to predict the course of the disease in a given case. As for those “people [who] really do not want to hear what you are going through,“ remember that “how are you ?” is merely a salutation, not a serious inquiry about your health. Finally, keeping a good attitude is important. A William James opined, “The greatest discovery of any generation is that a human being can alter his life by altering his attitude. “

    Cordially,

    Espo.

  • I lovee that quote!!! Thanks Espo!!!

  • A bore is a man who, when you ask him how he is, tells you. -- Bert Leston Taylor.

    I'm fine!

  • Good to hear from you Espo.

    Thank you for your input!!

    I appreciate hearing from you any time you want to share your insights.

    In loving kindness, Eva Gabrielle

  • It is VERY frustrating!!! One time your meds work fine, one time they don't work at all, & another time they TOO well & you get dyskenesia! I can say this is not just day to day--it's several times a day! I was dxed in 2004 at age 52.

  • I totally agree with you. I have finally come to that same conclusion, every day and every hour it's different. I am not going to keep adjusting meds to fit the PD symptoms any more.

  • Hi Kachimom;

    I agree with you.

    I never play around with my meds on my own.

    I don't know enough to do that.

    i do think it is important to take them at the same time every day.

    I am reading about John Gray's suggestions that amino acids may help us. Here is the link:

    If I choose this route, I will do it in tandem with my doc.

    You have a splendid day, and keep up the good work.

    Hugs, Eva Gabrielle

  • Vjessiv also posted this video last week. She reads widely and researches and may have more comments.

  • I keep trying to adjust them--it's not working!

  • I have been diagnosed with PD for 4-5 years now and I have struggled with which medications to take and the dosage and the time in between doses forever. So, I and my daughter, who lives with me, have come to the conclusion that the brain function varies from day to day and hour to hour therefore the PD symptyms vary as well. The doses I take one day works great and maybe the next day not so good. I have been trying to get the Sinimet dosage regulated so that I don't have strong PD symptoms ( slow stiff movement) or less Dyskinesia during the day. Seems impossible due to the brain function working irregularly. I have also come to the conclusion that taking the meds with food effects me differently than without. I am almost certain to get more Dyskinesia without food than with. Is any one else where I am??

  • I take my meds regularly every day, and do not experience the things you do.

    I did, before I started take the meds with great regularty.

    Blessings galore from Eva

  • I think that when one truly realizes that you , and you alone are the largest contributor to the factors that determine your own well being and that your attitude and determination to follow regimented exercise and careful administration of your own medication that only then will your PD be under some control. Only then will there be some kind on normality from day to day. I have to periodically lecture myself and I must constantly be monitoring all the time being cognizant that the rest of the world is not as interested in my PD as I am. Quietly, with out complaint, I must go ahead and do what I need to do, constantly being aware of and reacting to signs of depression, bowl movements, medication, dry eyes , dry mouth , swollen ankles, compulsive behavior etc. all while watching my own deterioration and yet at the same time remain happy and relate to those around me in a positive and sociable way. As Kermit said "It is not easy being green." No body said it would be but we have to do it, that is the lot we drew, it provides no relief to say that others are worse off, but it is true. My advise to a new Parky is the advise that I give myself : stop denying it, stop feeling sorry for yourself and get on with it, there is much work that must be done with this decease and while easy to excuse , failure to do it is a spiraling down hill slide that is catastrophic . People with PD especially newly diagnosed do not like to hear that, medication, exercise, surveillance and attitude all needed just to maintain and keep going, but it works , but no magic cure and no one else besides you who can do much.

    I say "Be Happy" but some people don't get it, and some times I forget also. I am trying not to lecture anyone. It has been said many different ways by many people in this forum, you have to control it by yourself and you can do it. you must do it.

    Sorry for the length of this post ,

    Be Happy

    Jim

  • Jim, im going to save a copy of your comment on my worth keeping list.

  • Very well said ..if I can add anything it would be just because you feel the way we feel dose not give us the right to take it out on the ones who care and are there with us. Be nice to those around you or you will find yourself alone. . You have it they dont..

  • Jim;

    I totally agree with everything you say.

    In addition to all of that, I also like to ask The Universe every morninging how I can serve and make someone else happy that day.

    Thinking about someone else's welfare goes a long way towards making me feel better.

    Blessing of happiness to you Jim.

  • ok:)

  • Hi Eva. It was my pleasure.

    John

  • Eva.

    I was struck by your comment, some time ago . . .

    "I am beginning to not give any of them much attention, and just go on with my day. If my friends ask me how I am, I tell them I am fine. I am finding that people really do not want to hear what you are going through, because it scares them!"

    I am struggling with how to communicate with others.... most notably my wife .... regarding my PD symptoms. I want to share emergence of new symptoms and not just deal with them alone. But she has nothing to say... or doesn't know what to say. And I really don't know what a "satisfactory" answer would be... Oftentimes I feel so alone.

    What is she "supposed to say?"....

    "Oh, that's interesting !" or perhaps

    "Oh, I'm so sorry this is happening"

    "Does that make you feel discouraged ?"

    "On a scale of one to ten, how does IT rate?"

    "Are you scared ?"

    Usually she says nothing.

    Sometimes she talks about some aches and pains she has (heck we're both 70, there is always something kicking off. Poor woman has had THREE hip replacements!

    Actually I think the "answer" I'm looking for is ...

    "How do you FEEL about this?"

    "How are we going to cope with this?"

    "Is there anything I can do to help you with this? "

    " Are you really bummed out about this, or are you dealing OK with it? "

    Or ....

    "How often does this [symptom] occur? "

    " What kind of change are we going to have to make to accommodate this?"

    Or, perish the thought, maybe something like "I wish you didn't have PD... or didn't have to go through this..." or how about "Parkinsons really sucks doesn't it!" Or even, "Well, you could have Pancreatic Cancer or ALS. Then you'd really be up a creek without a paddle." Or perhaps... "Well, who knows what the heck is around the corner. Damn those dead and dying neurons!" I really am getting silly. But I am feeling very alone. Maybe this is why I like talking with fellow Parkies. Fellow Parkie.

  • Hi, FMundo! I just re-read all the "Baffled" posts again to which I had replied but I noticed your last one was 4 days ago. I got on a website somehow called PatientsLikeMe & I get an email everyday saying "Today I feel" & when you click it on it goes to InstantMe which gives you 5 faces from very good to very bad. It says the more you use it, you will learn about your health. I only answered once when I was feeling good so I really don't anything about it but I thought you might be interested. They also post other things which I haven't looked at yet.

    Fellow Parkie,

    Brenda

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