life can be a roller coaster

hello everyone

i am new to this site today and am blindly trying to figure out how the program works so i hope you all will help me find my way thru the maze.

i was officially dx in feb of 09, right now i am pretty well managed with my meds but i must admit i have days i hate being owned by medication and get stubborn and don't take them as i should. in the end i am the only one who pays the out come. so i don't recommend this to anyone lol humor is my savior, and my sarcasm. i have a good support system in a couple of friends but my husband can't quite grasp the whole picture, i have had to leave my job and miss it but i do keep myself busy. but there are days i am so afraid of what tomorrow brings.

11 Replies

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  • Bette Davis said it best, "Getting old ain't for sissies."

  • hey larry

    you have given a quote that is so very true!!!! lol always am greatful for a whitty come back. i think a bright outlook is my best friend but at some point it faulters and so i appreciate it when someone gives me back my brighter out look

    thanks

  • Hang in there. I come to this site every day seeking moral support. There are some wonderful people on this sight offering advice and answering questions. The polls are interesting as well.

  • thank you yes i have been doing the polls even though it has been couple of years since dx and been staying stable this is the first that i have really reached out to talk to other PD comrades i have and continue to read all i can on everything but after a while you need to feel and here what other s are like and doing and handling

    bc

  • I am new to this site and still finding my way around it. So far, so good. Don't heasitate to ask questions.....you'll get a whole wealth of answers, which is good at least for me....cuts my anxiety levels on those days when I seem like I'm drowning in 'what ifs'....... Therese

  • thanks for your support on getting thru this site still not sure how to ask some of my questions but i know they will come as i feel more comfortable with time

    i often do wonder why me and than i say it is to be a learning experiencing which in turn will help someone else. thanks for contacting me and i know we will be back in touch how long ago were u dx and where are u as far as day to day health.

    blackcat

  • Blackcat,

    I too find humor and sarcasm as a release for PD. I tell people I am co-staring in a movie with Micheal J Fox called "Shake, Rattle and Roll"! My friends think I'm nuts and are constantly showing pity on me. All I ask is to be treated "normal". If i fall down, it's ok to laugh! Just help my butt up! I used to feel tied to my meds. But taking them is like breathing. Routine and necessary. Yes, some days I can't get out of bed. Unsteady gait, dystonia, pain, tremors are an everyday issue. So I laugh at it, fight it and don't it beat me. Not today, tomorrow or ever!

  • Blackcat, I am new to this site but I am here to understand PD , I do not have PD but have a very dear person in my life that does. I want to understand what others with PD feel and experience in their eveyday life and how they cope. I see with my friend that stress sets some of her PD symtom's off. Do you and others on this site find this to be true? I want so much to understand it all , so I may support her with every day life issues and encourage her to do good and normal everyday things in life. I agree after reading the different blogs on this site that folks with PD want to be treated normal and I applaud this, I really do! But in defense of people who do not have PD it is a matter of ignorance!! How does rest help ?? Does most people with PD need a regamental Rest period? I read as much as I can on the internet about PD , but most is written by Medical people who in my opinion do not listen to their paitents and just treat the symptom. So any advise would much be appreciated , I have a billion questions to ask going forward

  • anamcara

    i applaud you for caring enough for a friend to take such interest. i wish i had the answers . i guess that is why i am on this sight because as a PD patient i have more questions now than when i sat and wondered what was going on with my body. like the days when i would try to walk across a room and it was like i was on a tilting sail boat i was always walking to one side. it was an up hill battle in my head trying to walk a straight line. good thing i didnt get pulled over in a car, they would have locked me up for DUI. lol i can't speak for other pd friends on this sight but right now i am more scared than when i was given a dx. i see and feel some changes starting and all i can think is what is next. each day i seem to have more spasms in my feet and legs . and my legs feel like 10 ton when i walk very far. just look at my shoes and u can tell which leg has the drag. i appreciate you as well as the other friends on this site for just listening, not judgeing and throwing as much support my way as they can. my only hope is that i am and can return to them what they and you are giving out to me

  • So is a stroke like drag in walking a symptom to PD ? , I read all the symptoms and they mask other conditions - how does one know it is PD? I read that PD is a disconnect in the brain to motor functions - Am I understanding this right? What are your current symptons that a truely PD. I would appreciate any feedback from other PD Diagnosed on this site for there symptoms - I can only imagine that everyone is different and experience different daily constraints to this condition. I just want to understand the issues with this desease and how one copes with it on a daily basis - for example my friends tremors - does stress increase these ? How do PD folks deal with them - what works to calm these tremors or does anything calm these without medication - any feedback would be helpful. Does one Dx with PD need to strech the legs and arm muscles on a daiy basis what works for anyone I plead for your feeback. Swallowing , what should a care giver look for or to help someone - this alone scares me - I feel helpless in this case. I try to encourage positive renforcement - so I am looking for any ideas that anyone has dealing with PD on a personal basis (ie Has PD) what works for them in dealing PD everyday.

    Are there any physical aids needed to help as the desease progresses - Blackcat my dear friend has similar symptoms that you descibed , so that is why I am PICKING on you so to speak. To All the people who has been diagnosed with PD , May God Bless you all and that the researchers find a resolutions to this horrible desease.

  • a c

    make sure u go to the community blogs and to the parkingson's movement etcc up on the top of the page it covers a lot of areas

    i had one that says wondereing

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