Happy birthday to me

The day after my 51st birthday, I was diagnosed with PD. I received the dx. during my lunch break. My profession is one I loved deeply and felt so proud to be-a Registered Nurse specializing in Oncology/Bone Marrow Transplant. I hadn't been feeling well-tired, anxious-little shaky-my handwriting was not legible. I thought this was due to general fatigue due to taking care of my father. Prior to my dx. I was working and caring for my father (he had bladder cancer). We eventually went on home hospice, and he passed away peacefully at home. So, I thought my symptoms were associated with my situation, but to my shock it was PD. The transition of going from professional to disabled - on disability- has been quite an emotional rollercoaster, and to add to my situation- my disability carrier (for which I had been receiving benefits for 5 years) suddenly decided I was no longer disabled. I must add that I also have Rheumatoid Arthritis, and spinal stenosis. So, I now have a lawsuit to deal with.

I am venting, yes, I am. I try to take each day with some positive thinking, but it is very difficult at times. Maybe 2013 will bring some good news to those of us that have PD.

Best to all.

21 Replies

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  • hi

    sorry you are having a bad tiem with yoru PD

    r u on any meds for it ??

    i have psp so no meds to take for that and hterefore no probs iwrh side effects

    but a lot fo the problems which PWP have i have too

    balance probs _ falling over a loT

    recklessness at still tryhing to be independen tand still try8ign to do things For myself

    illegibel handwritign and dyslexic typign (SIC)

    speech problesm ALL WORSENEND BY STRESS!

    positiv ehtinkgin is difficult if u r depressed but u r right - 2013 mauy bring good news to all of us in 1 way or another

    lol JIll

    :-)

  • Hi Jillannf6,

    I am on alot of meds. I have significant balance problems I use a cane, and If I have to walk more that a block or 2 I use a walker. Handwriting is a mess I sometimes will use the speech recognition on the computer, my hands don't always want to work (also the Rheumatoid Arthritis works against me). Like i wrote swallowing and constipation is a nightmare. I just started to have problems with spelling and math- never had to use a calculator or dictionary now i do. Never thought life would have dealt a hand of cards like this- I guess you feel the same way. Like you, I try to remain independent- but sometimes it's hard. Best of luck to you, and thanks for commenting, and again hoping for a better 2013 to all.

  • I tend not to hink "why me?" as there is no right ot a long healthy life

    my mother had RA from her late 20s and i am so relieved that i do nto suffer like she did - and you mustsufffer too -with that - and all its additioanl problems

    going to the toile tin the night for a wee adn constipation problems are also difficult to cope witj to

    ;lolJill

    :-)

  • Hi,

    I don't think why me, and I think it relates to my nursing experience. I cared for patients going through a bone marrow transplant, and the suffering they endured to live makes me realize there is no rhyme or reason as to who gets sick and what diseases one might be diagnosed with. It just happens. I often think of these people I cared for and remembering them gives me strength and courage to handle my plight.

    I'm saddened to hear your mom suffered from RA. Life can be so hard at times for some , and again there is no answer. Keep strong and thanks for the reply.

  • i found that eating about 7 or 8 pitted dried prunes helps a lot, with constipation. every night after supper i have my prunes. and by morning , no problem.

  • Hi judam9,

    Thanks for the suggestion. I have trouble swallowing, so I will cut them up in small pieces. Hoping 2013 brings happiness, good health, and peace to you and yours.

  • perhaps prune juice would do just as well. just don't over do it , and it would be easier to swallow.

  • I am laughing at myself right now, because the obvious sometimes passes by--of course juice is the easier solution....

    Thanks.

  • I too was dx with PD at age 51 and I am now 62. I cannot beleve your carrier could have dropped you! I assume you were prompt with requests for medical updates by doctors for your disability? .

    Also are you not recieving social security benefits also?

    I am not trying to be critical just trying to wrap what i have left of a brain around this!

  • Hi eh110575,

    I was always on time with requests from the disability carrier, as were my docs.

    I am lucky to have a good lawyer, I do receive ss benefits. The disability insurance that I am now involved in a lawsuit was through payroll deduction, for which I was paying premiums each pay period for years. Hopefully, this can be resolved soon, it is very stressful. Hoping 2013 brings good things good health and peace to you and yours. Oh, I am 60 years old.

  • My PD symptoms (foot dragging) showed up shortly after my son died at 36. My GP resisted a long time giving me proper referral, saying it was grief and 'old age'. I was 62. Well, I worked until 67. Thank goodness I was able to do that and get on social security. My daughter had brain tumor followed by TBI and 4 years of insane negotiation to get her on disability. At christmas dinner we were reminiscing : "gee, this year no one had to go to emergency room" :D Actually she did, with a broken bone in foot. Well, happy new year! Hope you have a good lawyer!

  • Dear PatV,

    Wow, you really have had a rough time. I sincerely hope the new year brings you some peace . If I may ask, how is your daughter? I hope better. Wishing you and your family peace and better health in the new year.

  • She's coping. She spends hours sewing fabric art. She has a blog Count2BrainSurgery.

    Thanks!!

  • That's wonderful to hear. I love/loved doing crafts some are harder to do now, but I started making a piece quilt with pre-cut pieces, and I am using my good old machine. a little shaky, but I am enjoying the process.

    Both me and the machine are shaky!!!!

  • Hard as it is (today my neck is killing me) I try to face the day with a 3G attitude--God, Grace and Gratitude. But I do admit there are days I say why me? Happy New Year everyone.

    Hugs, Terri

  • i usually think, why not me? so far it hasn't taken to much punch out of me, but the day isn't over yet. or i'm getting used to it.

  • Dear judam9,

    I know sometimes I also think why not me? What would make me any different from anyone else dealing with a disease? I just try to make it through each day and feel okay if I had an okay/good day, and if it wasn't so good, I try to have the attitude maybe tomorrow will be

    better. Hoping 2013 brings good health and peace.

  • Dear tlongmire,

    I know some days are hard and pity parties take place. I like your 3G attitude.

    Hoping you have better days ahead. Happy healthy and peaceful 2013.

    Hugs, right back

    Sulka

  • hi terri,

    my neck used to be in great pain also. just moving it from side to side or up and down, was extremely painful. but my neuro noticed it, and sent me to a therapist for neck exercises. and have been doing them every morning without fail, along with my other exercises, and now i can turn my head and move it up and down without pain. or very little. they seem to have a therapist that covers everything, and it's not a med. i do like that 3G attitude. but you also have to help yourself as much as possible.

  • I have read that a stressful trauma in life can jumpstart the beginnings of Parkinson's or other neuro diseases. I had my hip replaced in 2004 when I was 53 and it was so traumatic , I believe that is when I first became symptomatic. I remember in physical therapy, my therapist said you walk strange, your arms don't move. It took me two years to walk without pain. When a tremor develped in my little finger, the neurologist told me I had essential tremor and treated me unsuccessfully........finally in 2009, 5 yrs. later I was correctly dx......

  • It has been sometime since i have written. I hope all are holding their own. I have progressed in the past few months. However,some good news,i have won my lawsuit against my disability carrier they reinstated my benefits. After 5 years of receiving benefits they abrutley stopped my benefits saying i was no longer disabled. I guess i should nominate them for a noble peace prize in medicine for they cured my disability from pd,ra,and spinal stenosis!!!! Good wishes to all.

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