wondering?

in the mornings whenn i wake up ( if it was a nite i was lucky enough to sleep) i will stay under the covers and think, maybe they were wrong, maybe i reallt don't have parkinson's . then i get up and feel the frozen ankle joints and the hurt as i move areas that haven't moved overnite and i think again how can they be so sure. but the doctors quickly remind me as they refill my rx and continue to document my gait and my face, and the weak grip etc reality sets back in and i will sit in my car and try to get back to my world of only if, but it doesn't return. i am luckier than most , i know but i don't know what to feel so i do the humor and the convincing tht i have never felt better. why is it that we push to hard to convince people of our make believe game ? human nature sure can play games with minds i guess what i hate the most is when i tell someone that i have pd the look of pity and saddness they immediately have on their faces, this in turn makes me act even more that there is nothing wrong and so again when i awaken the next morning i think maybe the docs are wrong

does anyone esle play these mind games with themselves\

20 Replies

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  • good afternoon blackcat

    i know where your coming from about the mind games i do the same always thinking what will i be like in the near future things like will i still be able to cope with every day things [why do we beat our selfs up so] but the most annoying thing is when you tell someone your fears the stock answer is "well you might get knocked down by a bus tomorrow" my answer to that is you normally see the bus coming which shuts them up for a while what do they know of our pain.

    at this point i would normally tell a joke but i got a message last night from admin telling me my joke was'ent funny and thought it was a cry for help look under blooming cheek blog and see what you think see you later floppy

  • hi floppy - i think the more we can laugh at ouselves the beter - dont worry i had a blog deleted when i asked about maruihana seeds !

  • evening floppy

    just didn't see or hear anything from u today just wanting to make sure you are okay look for u later

  • hello blackcat

    we were out this afternoon with our two girls they are in a majorette troop and it was there awards party i am proud to say they both did very well and my yougest who is only 6 came away with the top trophy which is given to the best majorette out of all the age groups put togeather chosen by the trainers she has only been a majorette for about 6 months but they say she is a natural so you can imagine how proud we are

  • floppy

    that is fantastic, i know for me these happy times make me feel almost normal. smalll world, i twirled from the time i was 8 and ended up teaching and judgeing for competiopn. that is how i made money all thru high school and college. i taught until i had my 2nd son good memories . i would alwsys be so proud of my girls no matter what,

    so how are u feeling after the day

    looling forward to hearing how the day afftected u

  • floppy

    i will look and get back to u on that but right now i wanted to tell u thanks and i like your response to the bus comment, i just usually get the look of pity. i think it is normal to beat ourselves up but even though we know there is no reason to. it is such a strnge disease the paiin isn't always physical the mental ppain is worse. the mental fogs really scare me especialy if i am driving when it hits. my husband is getting very trying to me and adding stress because he is trying to convince me i am unable to drive safely. i don't need people around me who don't support me, i need the ones that push me

    again thanks for the ear and the positive remarks will get back to u on your joke

  • Your post brought back vivid memories for me. I had the same type of experiences, especially waking up and noticing that I wasn't having any tremors.Reality would soon set in when the tremors started back with a new vengeance. I often would doubt the diagnosis because I did not "look" or "act" like a person dealing with Parkinson's Disease. It has been several years post diagnosis and my involvement with advocacy work has helped me to realize that I am most fortunate to continue working and enjoying what I do. I don't get the looks of pity or sadness anymore, I get the "I would have never guessed that you had PD". So... a different type of mind game begins.

  • how many years has it been since dx and what type for lackk of a better way to ask did u have, where and what type of systems is guess is the better way. did they start u on meds or some other type of treatmen

    just get curious. i get the feeling yours is a slow progression type i know i can be way off and u don't have to answer if u don't want

    what type of advocacy work do u do? i know that doiing that type of work definely takes you mind off of your self. i am a grief specialist and i have started doing this again, love the work and definetly keeps my mind off of my problems thanks for sharing

  • morning blackcat

    in answer to your question i was dx on xmas eve 08 but with hindsight i have had symthoms since about 04. i have tremor in right hand ,slowness of movement toes curl under when walking any short distance [very uncomfortable] and right leg drags abit also pain in arms and shoulders. i gave up my job nearly 2 years ago it was getting harder to do by the day.i try keep active in other ways such as helping my elderley parents who cant get about as much i will go and do the shopping for them as well as putting dads bets on he loves backing the horses them 2 jobs alone can fill my day up

  • hello blackcat

    i was just curious as to where you come from am i right in thinking usa.

    if you dont want to disclose this information i will respect your wishes

    floppy

  • u guess right, may i ask the same of u and of course same goes for u if u don't want to

  • i live in england in a place called yorkshire it is the largest county in britain if you look at a map we are right in the centre i live about 10 miles from the city of leeds i dont know if you follow english soccor but we have a famous team called leeds united

  • lso is a huge geography and history nut so that is where he may have talked about it too how old are ur parents ? do u have a support system around u at all? are u on meds or how are u being treated and is it helping sorry to sound so nosy but i just am always curious in the different treatments and reactions to meds etc i think it is wonderful tht u are taking care of your parents that has to be so difficult

  • I know how you feel. Some days i have to evaluate my self to determine if I am being punished or challanged. Neither one is fun. As I've read these blogs I've come to realise that we all share the same feelings and we are all normal in SOME way: The Parkinson's Way. I guess that is a good thing.

  • in my grief work i am always telling my clients they are normal that there is no right or wrong way to grieve. that they are normal. never thought about turning that around to think the same way about parkinson's

    good food for thought thanks

  • ALL THE TIME ,,all the time blackcat

  • i am sorry maybe because it is late but i think i know what u mean by all the time all the time but i am not sure. may i ask when u were dx and how your pd is being handled

  • Whether it is the death of a loved one or the diagnosis of a long-term or terminal illness, you go through a grief process and the first of those is DENIAL. That first response can last longer for some than for others.

    I talked with a lady whose husband was diagnosed with PD. He refused to believe it and refuses to take medication. She is a nurse and it scares her.

    My diagnosis took so long that I was already in stage II with some stage III symptoms. I had already diagnosed myself by then. There was no denial on my part. I would be scared to death to go off my meds and have the horrific days I had before I was finally placed on meds. To this point, the side affects of the meds are an annoying, the condition I was in before diagnosis made me think about taking a bottle of pills and getting it over with...,

  • Hello blackcat, I apologize for the delayed response. You seem to have quite a nice thread going so far. I have found that the PD community is one of the most caring and thoughtful group, which I attribute to not having much support from those that don't know what we are experiencing on a daily basis.

    I was diagnosed with PD in 2007 at age 42. My symptoms developed when I was about 37 with the left hand tremor, then balance issues, and then rigidity on the left side of the body (this is when I finally decided to see a doctor because I thought I'd had a stroke.) I've been fortunate in that I'm able to continue working, which I attribute to having the best medical care possible with Dr. Jankovic at Baylor College of Medicine in Houston.I was started on Sinemet upon diagnosis and also added Azilect within two months. My medication regimen has remained stable since I was diagnosed.

    My advocacy work involves awareness and education about clinical trials for PD, with the Parkinson's Disease Foundation, seeking funding at the federal level for research and programs designed to help the PD community, with the Parkinson's Action Network, and most recently, working with the Parkinson's Movement on the international level to develop a patient-focused, research-driven organization to build the voice of the PD community.

    As I mentioned previously, my work as an advocate has made me aware of the need to be a voice for those that can't speak for themselves. We need people like you whom have a desire to make a difference. Please let me know if I can help in any way with information, resources, etc.

    Israel

  • israel

    thank u for the kind words yes i will take any and all info that i can get concerning resources and even the advocate side. i did have to leave my job, i am a funeral director and grief specialist i couldn't keep up the long hours that i had and with the pd was weaker and couldn;t do the lifting and moving etc that the job took. i am now still doing grief care, i work for nothing with people who fine me and have no insurance to go anywhere else. so it keeps my skils a little honed. i too take sinement and azilect and carbidopa-levodopa and my symptoms on the most part are controled i am noticing some changes in the last couple of months with cramping of legs and feet, and the meds wear off or my body feels like it before it is time for my next dose

    i have to stay busy though it helps the thoughts. i am figuring u live in houston since your doctor is there. i am in ohio but have spent time in houston, had family there. i am looking forward to hearing more about the options out there and what can be done to fight this disease

    thank you

    blackcat

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