2 years & a day....
Today I realized it has been 2 years and a day since my neuro told me & my husband that after months of tests (she truly left no stone unturned here!) and thru the process of elimination she was officially diagnosing me with PD. She had been monitoring me for months and felt sure she was correct in her diagnosis.
It floored my husband to hear what she was telling us (even though he knew it was being considered - the words "Parkinson's Disease" coming out of her mouth totally threw him!). He has always felt like the "protector" of me and our two daughters. This left him feeling totally helpless. His knee-jerk reaction was to bombard the neuro with questions - including what needed to be done to get me on disability ASAP, since he did not want the stress of my job to cause additional health problems for me or cause my PD to progress any faster. (She calmly answered his questions, as well explained how difficult it is for a PD patient to qualify for disability.)
Me - I felt a HUGE relief in now knowing what all these crazy & varied symptoms - some of which I had been experiencing for years - added up to. Now I knew the devil I was dealing with and was anxious to find out as much about PD as there was out there. I didn't do the "happy dance", but I didn't shed a tear either.
2 years and a day later I am a different person. My Parkinson's has progressed and changed over the past two years, but the progression rate has been slow enough that I have been able to keep up with it. Don't get me wrong...sometimes PD just up & slaps me in the face. But - my "freak out" reaction from each new or changing symptom is mostly a thing of the past. I found my online support group to be my most valuable asset over the past two years. They have supported me, educated me more so than any other resource - since they are LIVING with PD, and just knowing they are there for me gives me a sense of peace. My Parkinson's has opened my eyes and my mind to all the possibilities life holds! While it has made me more aware that we have a finite number of days on this earth - it has also caused me to realize that not all of those days may be "good" days. (This realization is something those close to me have thought more of, too.) I live life with a different mindset - in a GOOD way! Even on my "bad PD" days (like yesterday) I try to make sure I have made the day count for something.
2 years and a day and I find my life with PD is not at all what I pictured it would be - as I drove home from the neuro's office on 2/2/11. I have learned how individualized & varied PD can be. I have learned how much stronger I am than I saw myself back then. I developed a deeper understanding of what is truly important in my life. I have learned that sometimes life can be about ME - without taking away from my love for my family. I have learned I can admit to others when I am having a bad PD day without fear they will "baby" me (they've learned I am just explaining/educating - not looking for special treatment!). I have learned not to fear the future! I have learned I am a blessed and loved woman - PD will never take that away from me!!!
It floored my husband to hear what she was telling us (even though he knew it was being considered - the words "Parkinson's Disease" coming out of her mouth totally threw him!). He has always felt like the "protector" of me and our two daughters. This left him feeling totally helpless. His knee-jerk reaction was to bombard the neuro with questions - including what needed to be done to get me on disability ASAP, since he did not want the stress of my job to cause additional health problems for me or cause my PD to progress any faster. (She calmly answered his questions, as well explained how difficult it is for a PD patient to qualify for disability.)
Me - I felt a HUGE relief in now knowing what all these crazy & varied symptoms - some of which I had been experiencing for years - added up to. Now I knew the devil I was dealing with and was anxious to find out as much about PD as there was out there. I didn't do the "happy dance", but I didn't shed a tear either.
2 years and a day later I am a different person. My Parkinson's has progressed and changed over the past two years, but the progression rate has been slow enough that I have been able to keep up with it. Don't get me wrong...sometimes PD just up & slaps me in the face. But - my "freak out" reaction from each new or changing symptom is mostly a thing of the past. I found my online support group to be my most valuable asset over the past two years. They have supported me, educated me more so than any other resource - since they are LIVING with PD, and just knowing they are there for me gives me a sense of peace. My Parkinson's has opened my eyes and my mind to all the possibilities life holds! While it has made me more aware that we have a finite number of days on this earth - it has also caused me to realize that not all of those days may be "good" days. (This realization is something those close to me have thought more of, too.) I live life with a different mindset - in a GOOD way! Even on my "bad PD" days (like yesterday) I try to make sure I have made the day count for something.
2 years and a day and I find my life with PD is not at all what I pictured it would be - as I drove home from the neuro's office on 2/2/11. I have learned how individualized & varied PD can be. I have learned how much stronger I am than I saw myself back then. I developed a deeper understanding of what is truly important in my life. I have learned that sometimes life can be about ME - without taking away from my love for my family. I have learned I can admit to others when I am having a bad PD day without fear they will "baby" me (they've learned I am just explaining/educating - not looking for special treatment!). I have learned not to fear the future! I have learned I am a blessed and loved woman - PD will never take that away from me!!!
Replies
Very well written. This support group is the best. Brian
Yes we learn a lot don\'t we. I suspect the learning is not over either. I am coming up on my 2 year anniversary in April and many of my thoughts are the same. Thanks for sharing them, I was nodding my head yes, the whole time reading it. I didn\'t shed a tear in the office, but I did when I got to the car after. The story of your husband made me laugh. How helpless they must feel so many times, poor guys.
Happy crappy anniversay!!! (Just didnt seem right to just say happy!!! lol)
Hugs!
Thank you for sharing this, I have to say I read this in virtual disbelief as I could have easily written it myself (perhaps not so well but the sentiment would be the same!).
I am coming up to my 2nd year Anniversary at the end of June. After 18 months of investigation my DaTScan results finally gave the answer. I was expecting the result so no tears, no drama but a relief that I wasn\'t going mad, there was actually a name for this and I could now look to how best to deal with it. Your husbands reaction made me laugh, mine was struck silent, he couldn\'t speak about it for months. He just wanted to wrap me in cotton wool while he protected me. I have to say he hasn\'t improved that much, he still wants to \'fix me\' or \'fix things for me\' but we are working on that. LOL.
I have changed in pretty much the same as yourself, not all for the best as this is of course progressive but after the panic of the sharp learning curve wears off, then the appreciation of the little things in life take over. I can see with more clarity now what is important to me, for me PD is a wake up call.
CM is right \'happy\' isn\'t the right word Anniversary living with PD.
Julie