Ten things I Would Share with People affected by Parkinson's Disease (Especially Newly Diagnosed)

A  Contemporary Christian band, Sidewalk Prophets, sing  a song entitled  "The Words I Would Say"

  In the song, the writer talks about writing a friend a note, and he summarizes 3 things he thought his friend should know.  We can only assume that they were important concepts the writer wanted to communicate out of love to his friend. They are certainly good , and I wish I could, just as well,  tell some of you some things on my heart.

In this blog today, I want to tell you and anyone who has been diagnosed with Parkinsons's disease in the last year and your family and friends  some things that have been helpful to me as I  have been on  a life journey with PD for 11 years now.  I hope these things I mention below might be helpful to others as well as you face PD or any other chronic illness.  The challenge you face may seem daunting ....  It will affect all parts of your life, eventually.  But it is still possible to have a full and meaningful life while having Parkinson's disease!  I know because I have!  I was 40 years old, had a great job, was a mom to a 9 year old daughter, was active at home, work and church  and was diagnosed with Parkinson's disease.  I worked 5 more years and have had an active and fulfilling (althought challenging) life in the 11 years since my diagnosis.

Here are 10 things I'd like to  share with anyone who has recently been diagnosed with PD (and their families and friends):
1.  One of the hardest things you will do is to tell others about your illness.   I think it is hard because we don't like to admit we can't control it, you don't know how it will affect you tomorrow much less 5 years from now.  And even the people you tell the news to may only minimally educated about PD, so their preconceived perceptions of the illness may make them not know how to relate or know what to say to you at times.
2.  Don't give up on yourself--get ready to think about things in a different light and to travel in a slower lane.  But I can tell you this, I've learned alot and found parts of me I did not know existed  in the slow lane, so get ready...life and PD ...they can bring out the best in you ....if you let them!
3.  Take advantage of other's knowledge about your condition, yet take all advise under careful evaluation and scrutiny.  BECOME your own health care advocate, and don't be afraid to ask questions.
4.  Realize that PD is different for everyone (that is one reason it is so hard to diagnose, especially in younger people) including symptoms and progression.
5. Stay positive in attitude; be braver than you think you can; and fight for a cure.  Think about it....you think many people who don't have an illness can even relate/???  IF they can't relate they will most likely not be of much help in  facilitating a cure.  Soooooooooo...
6.  Educate yourself, your family and your friends;   do things you know will help you help yourself.
7.  You are gonna have lots of great days still, but learn how to handle both the good and the bad days.
8.  You need to dig into each area that can influence PD in your life:  physical, mental, spiritual.  Of these, I consider the spiritual and the effort of prayer a great tool to cope with pd.    And I ask others(without hesitation).... to pray for me as well.  And always know, you ARE NOT ALONE!!!
9.   Keep your routine as routine as possible but realize life goes on and  some people will always be idiots.  And remind yourself that this illness is hard for others to understand (remember that lil saying "sticks and stones may break my bones but words will never hurt me"?  if not, you will now)until we get everyone educated or a cure is found!
10.   Celebrate small victories and never, ever, ever give up hope!!!  Just because you have this illness does not automatically mean you cannot reach your goals in life.  But I would suggest you break down the goals into smaller goals and reassess  how you can reach them and celebrate when you do.   Celebrations are always good!!!! woooo hooooo!!!!!!

  Hang in there friend!    This journey, this challenge, this life altering illness is not for the faint, but you will discover amazing things through it if you have the right perspective and don't crawl in a hole and have a major pity party.

OK,  I am gonna go celebrate the fact that I finished this article!!! Love and hugs to all of my friends affected by PD--you are my inspiration and a great source of strength for me!
Judy 12/22/13
Romans 5: 1-11

For more information on Parkinson's Disease this webpage has a link to many good resources:  http://www.unitywalk.org/links.php

What Helped Me get Through Brain Surgery-faith,prayers, a song, a hand, and #22

Hopefully my title for this blog has you intrigued. 
 I have been  living with Parkinson's Disease for 11 years.  The last few years  I became worried about having to have a surgery called "Deep Brain Stimulation" or DBS.  I was not thrilled with the idea of someone poking around in my brain (and having to be awake while they do it).  I mean, who can believe it when they say the brain feels no pain?  It has been a long process to get here but almost 1 year ago I had my first appointment at Wake Forest with a neurologist to start the 'evaluation' of my potential to tolerate and benefit from installing one or two electrodes in my brain to help some of the debilitating symptoms of Parkinson's disease.   As part of this process, a team of doctors there had to see me and evaluate as a team if I would be a good candidate for this type of surgery.  I saw a neurologist (had to be evaluated off meds for 12 hours ==you

don't even want to know how difficult that was) and then after

taking medication.  Another appointment with a neuropsycologist--where i got to play memory games for about 3 hours and describe what word described a drawn picture.  And then there was counting backwards by seven starting at 100....don't ask me how that helps them know if i need an electrode in my head.   Then a meeting with the nice man who would be putting a hole and a foreign object into my brain, the neurosurgeon. And then finally a psychologist (twice, for some unknown reason and an additional appt that apparently was not necessary, but assume it was God's timing)  Then finally I was notified that my surgery to implant a DBS system for the left side of my body would take place OCT 18, 2013 and then a same day surgery about 3 weeks later for placement of the battery pack on NOV 8, 2013.

  Many of you many know that in addition to this major health decision, we lost our only child, Carol Singletary, on Feb 27, 2013 in a tragic accident.  Our comfort, consolation, and courage came from faith and the outpouring of love to us from that point and even still.   And I want people to know, before my first appointment for DBS, I was scared.  But, I told God I was turning this matter all over to Him because I could not face it alone.  And when I went to that first appointment in Dec 2012,  I had an amazing calm and peace in my soul about proceeding with the whole process.  Once my surgery date was known, I asked everyone I knew and many that I don't know so well, by posting on facebook, for any who would to pray for me and the surgery I would undergo.  For those of you who responded or who lifted me up to the LORD in prayer, I want you to know, prayers kept me going and helped me make it through that first surgery.  There are videos of  DBS surgery all  over YouTube that you can watch, but I did not want to see any of them( I had previously seen a couple).  If they had videotaped my surgery it would have been in the comedy section most likely, but it was no laughing matter to me at the time.   Because I must give verbal feedback to the doctors during the surgery, I could not be asleep and I had to be off any Parkinson's medications for over 10 hours.   For me this means very uncomfortable cramping of my left arm, leg, and neck and back.  So while they were drilling a hole in my head I was trying to not go crazy because my arm, leg and shoulder where all cramping.   I sat there in a reclining position, my eyes closed to try and focus inward and to pray, with my head immobilized in a head frame and my body revolting with Parkinson's causing  my muscles to be in major turmoil and cramping.
  During this time the guy who was making sure I didn't go to sleep was asking me what kind of music I liked.  Not long afterward I heard some Christian music playing, and at one of the worst times for me during the surgery the song that was playing that calmed me some was "I Can Only Imagine" and I just thought about how glad I was that my daughter was in the presence of God and she would never have to experience any kind of pain.   Another thing that helped kind of relax me was the vibration from the drill once they started the surgery..yeah, like as in drilling the hole for the electrode to go into.   I still would have rather been in a hot tub with  a nice big cold Pepsi to drink than there, but I guess they haven't tried the surgery in that environment yet.  The other thing that helped calm me was the resident who was giving me as little anesthesia as possible held at least one of my hands the whole time.  I knew from that touch that he was there if i needed anything.   At one point,  I opened my eyes and called his name and he leaned over to where i could see him, I asked, "is there anything you can do to help me feel better"  and he said "i'm sorry, no."  All I could see were his eye above his mask and they looked like they were pretty full of  water at that time.  But I hope he knows how helpful he was just by holding my hand and talking to me a such a calm and reassuring voice. And at one point I was telling myself, "Carol wanted you to do this.  ..if she can play hard in basketball like she did then  I can do this"..so I started saying out loud "22"  over and over again.  And #22. Carol Hensley Singletary, helped me push through that day.  Thank you baby!  I spent one night in the hospital and was able to go home the next evening.   Progress has been slow, but I should be used to living in the slow lane......so watch out when I get 'juiced' up---this gal is gonna be living life full and fast!  Beep beep....zooooooooommmmmmmmmm.
  OK, anyone wanna go next?  Have a little brain surgery?  LOL   
  P.S.  if you are wondering...no, i did not have to have my head shaved!
Wake Forest Neurology weblink http://www.wakehealth.edu/Neurosciences/Movement-Disorders-Center/  
and you can look at www.medtronic.com to find out more about DBS for Parkinson's.