Last catch up post! June 10, 2012
Today I started my first Parkinson's drug - Selegiline (a MAO -B inhibitor) Most of you know how I have agonized over starting the meds journey. I finished all the tests with the PPMI study that they wanted meds free so now I have no more excuses. My last bit of denial is fading away. I really do have PD don't I???
I am just dipping my toe in the meds pond for now. I guess we will see how it goes before I wade further in. For now I am at peace with this decision. (Will see where I am tomorrow, lol)
My neuro told me I probably would not see any difference with this drug. So why am I taking it??? Oh yeah - the possible neuro protection potential. Will I ever know if it works or not? Probably not! I guess this is also a journey of faith and belief. A very long and hard journey I fear! Oh well - God does not seem to be letting me off this ride. So I will hold on the best I can!
Friday, June 22, 2012
Sealed my Fate
Catch up post #3 from my DS journal - June 5, 2012.
I sealed my fate when I made a 3 night non-refundable hotel reservation. My husband suggested it might not be a good ideal given that we were both having lumbar punctures right before the proposed get away. "We'll be fine" I responded, "The one I had before was a piece of cake and I had no issues at all from it." Famous last words!
I am just very grateful it was me that got the bad headaches and not my husband!!! I would have felt horrible if he was the one to feel miserable the whole time, especially since he warned me it might not be a good ideal. Oh well...I enjoyed the hotel room and the bed (as long as I stayed laying down the pain subsided). And hubby enjoyed all the fun activities (alone) and was even kind enough to say he missed me being with him while he had fun. He also managed to restrain himself and did not once say "I told you so".
Today is day 5 after the procedure and the first pain free day. I can't tell you how good it felt today to be able to sit upright without my head pounding. I emailed the nurse about the headaches and she said next time they would try a smaller needle. Next time???? That was kind of like talking to a lady in labor about the next baby she might have. UMM ...I don't think so...there will be no more babies...EVER!!!! Next time...yeah right! All I have to say is they better hope I have severe memory loss by then!!!!
Now, lets see if I can once again resume my exercise routine tomorrow. For the first time since I started this whole Parkinsons journey, I could not even go out and walk. Boy am I feeling it too. But, at least my head doesn't hurt anymore!
I sealed my fate when I made a 3 night non-refundable hotel reservation. My husband suggested it might not be a good ideal given that we were both having lumbar punctures right before the proposed get away. "We'll be fine" I responded, "The one I had before was a piece of cake and I had no issues at all from it." Famous last words!
I am just very grateful it was me that got the bad headaches and not my husband!!! I would have felt horrible if he was the one to feel miserable the whole time, especially since he warned me it might not be a good ideal. Oh well...I enjoyed the hotel room and the bed (as long as I stayed laying down the pain subsided). And hubby enjoyed all the fun activities (alone) and was even kind enough to say he missed me being with him while he had fun. He also managed to restrain himself and did not once say "I told you so".
Today is day 5 after the procedure and the first pain free day. I can't tell you how good it felt today to be able to sit upright without my head pounding. I emailed the nurse about the headaches and she said next time they would try a smaller needle. Next time???? That was kind of like talking to a lady in labor about the next baby she might have. UMM ...I don't think so...there will be no more babies...EVER!!!! Next time...yeah right! All I have to say is they better hope I have severe memory loss by then!!!!
Now, lets see if I can once again resume my exercise routine tomorrow. For the first time since I started this whole Parkinsons journey, I could not even go out and walk. Boy am I feeling it too. But, at least my head doesn't hurt anymore!
May 27th update
Catch up post #2. For any readers who are not DS friends. Copied from my DS journal, May 27, 2012.
The funeral for my mother-in-law went well. While we miss her we all are glad she is in a better place and is no longer encumbered in her worn out body. She left us quite a legacy to follow.
My son is doing better in some ways - worse in other ways. We are doing what we can to help and turning the rest over to God. They found out that the combination of drugs they put him on was causing the panic attacks and, surprisingly, also a lot of the painful muscle spasms. So pain wise - he is doing better, but he still can not return to work (he does heavy manual labor for a living) so financially things are really bad for him. He seems to be one of those kids that wears a sign on his back - "hurt me please - my life is not sucky enough yet". The worries never go away with our kids do they! They just seem to multiply as their families grow.
As for me - as you can guess - all of this has hyped my symptoms a bit. The shaking makes me feel like a nervous wreck even when I am calm. I have been off kilter with my exercise schedule and of course eating poorly (a lot of emotional sugar loaded junk eating). This week of getting back on a sort of reg. schedule is helping calm the tremors down a bit. I have also been having more foot cramps lately so I am hoping getting back on track with the exercise will help with those too. I had one on my right side last week, which is a first. (it is not progressing, it is not progressing, it is not....) If I say it over and over again, does it make it true??? Well - it works for politicians!!!
I have another PPMI study appointment this week. My husband, who was gently persuaded to also be a guinea pig, and I will be having back to back lumbar punctures. Doesn't that sound romantic?? lol At our age - it is!!!! With this procedure I will meet the goal of staying med free for the PPMI tests wanted. So after this appointment I will begin to travel the meds road. I am so excited! NOT!!!!!!!! Actually, I am dreading this phase and if I could figure out a way to not do meds - I would go that route instead. But I see no alternatives at this point. (sighs and deep breaths) Not to worry though - my doctor has decided to help me delay my anxiousness on the med situation. I can not get an appointment with him and am being told they are not opening his schedule again until sometime in July and they will call me when they open it up. HHMMPPff... wonder what would happen if I really needed to see him??? Oh well - I will live with the symptoms as is for awhile longer and quit worrying about the meds road until then.
The funeral for my mother-in-law went well. While we miss her we all are glad she is in a better place and is no longer encumbered in her worn out body. She left us quite a legacy to follow.
My son is doing better in some ways - worse in other ways. We are doing what we can to help and turning the rest over to God. They found out that the combination of drugs they put him on was causing the panic attacks and, surprisingly, also a lot of the painful muscle spasms. So pain wise - he is doing better, but he still can not return to work (he does heavy manual labor for a living) so financially things are really bad for him. He seems to be one of those kids that wears a sign on his back - "hurt me please - my life is not sucky enough yet". The worries never go away with our kids do they! They just seem to multiply as their families grow.
As for me - as you can guess - all of this has hyped my symptoms a bit. The shaking makes me feel like a nervous wreck even when I am calm. I have been off kilter with my exercise schedule and of course eating poorly (a lot of emotional sugar loaded junk eating). This week of getting back on a sort of reg. schedule is helping calm the tremors down a bit. I have also been having more foot cramps lately so I am hoping getting back on track with the exercise will help with those too. I had one on my right side last week, which is a first. (it is not progressing, it is not progressing, it is not....) If I say it over and over again, does it make it true??? Well - it works for politicians!!!
I have another PPMI study appointment this week. My husband, who was gently persuaded to also be a guinea pig, and I will be having back to back lumbar punctures. Doesn't that sound romantic?? lol At our age - it is!!!! With this procedure I will meet the goal of staying med free for the PPMI tests wanted. So after this appointment I will begin to travel the meds road. I am so excited! NOT!!!!!!!! Actually, I am dreading this phase and if I could figure out a way to not do meds - I would go that route instead. But I see no alternatives at this point. (sighs and deep breaths) Not to worry though - my doctor has decided to help me delay my anxiousness on the med situation. I can not get an appointment with him and am being told they are not opening his schedule again until sometime in July and they will call me when they open it up. HHMMPPff... wonder what would happen if I really needed to see him??? Oh well - I will live with the symptoms as is for awhile longer and quit worrying about the meds road until then.
Family Issues
Catch up post #1 - Copied from my DS journal - May 7, 2012 For any readers that are not DS friends (if there are any) This explains the storm in more detail!
We have been dealing with a lot of emotional stuff lately. Sometimes when it rains, it pours. One of our sons and family has had crisis after crisis this past year - including 2 car accidents (both not their fault) and a fire that destroyed all of their possessions. Fortunately no-one was hurt in the fire, but my son has been in a lot of pain since the latest car accident a month ago. He is also starting to experience panic attacks. I guess its not surprising after all he has been through lately. It breaks my heart and I wonder how much more he can handle before he breaks. I fear it is not much!!
To top it off in the past month and a half my sweet beautiful MIL (mother-in-law) fell and broke her arm, then fell again and broke her hip, had two surgeries to fix the breaks, then had a major stroke. Thankfully, God has been merciful and allowed her to pass away peacefully this weekend. Although we are sad and will greatly miss her, we are comforted to know she is in a better place and that she has been reunited with her loved ones, and her beloved husband. This weekend, we went through her pictures and was reminded of the many many wonderful memories of her life. She was (is) a beautiful lady who has taught us much. Yes - she will be missed indeed!
Over all, for now, I am holding up OK. I continue to try to stick to my exercise routine which helps with the stress. We have been traveling a lot to deal with these issues. God walks this road with me and I will be eternally grateful for His continuous help and support. Without it - I don't know where I would be at this moment. Actually - I do know - and it would not be pretty.
We have been dealing with a lot of emotional stuff lately. Sometimes when it rains, it pours. One of our sons and family has had crisis after crisis this past year - including 2 car accidents (both not their fault) and a fire that destroyed all of their possessions. Fortunately no-one was hurt in the fire, but my son has been in a lot of pain since the latest car accident a month ago. He is also starting to experience panic attacks. I guess its not surprising after all he has been through lately. It breaks my heart and I wonder how much more he can handle before he breaks. I fear it is not much!!
To top it off in the past month and a half my sweet beautiful MIL (mother-in-law) fell and broke her arm, then fell again and broke her hip, had two surgeries to fix the breaks, then had a major stroke. Thankfully, God has been merciful and allowed her to pass away peacefully this weekend. Although we are sad and will greatly miss her, we are comforted to know she is in a better place and that she has been reunited with her loved ones, and her beloved husband. This weekend, we went through her pictures and was reminded of the many many wonderful memories of her life. She was (is) a beautiful lady who has taught us much. Yes - she will be missed indeed!
Over all, for now, I am holding up OK. I continue to try to stick to my exercise routine which helps with the stress. We have been traveling a lot to deal with these issues. God walks this road with me and I will be eternally grateful for His continuous help and support. Without it - I don't know where I would be at this moment. Actually - I do know - and it would not be pretty.
My PPMI button is gone!!
Did you notice? My PPMI proud button is missing from my blog! It just disappeared, one day there, the next day gone! Just like that!
Apparently someone decided to change the Michael J. Fox Foundation website and in doing so they deleted the link. And can you believe it, they didn't even consult me!! pppfffttt
Well - for their information, I am still a proud participant in the PPMI study - with or without my blog button!!!
Apparently someone decided to change the Michael J. Fox Foundation website and in doing so they deleted the link. And can you believe it, they didn't even consult me!! pppfffttt
Well - for their information, I am still a proud participant in the PPMI study - with or without my blog button!!!
Everything happens for a reason
Thanks to Dan for sharing this on DS.
And thanks to all those who are in my life for a reason!!
EVERYTHING HAPPENS FOR A REASON
Sometimes people come into your life and you know right away that they were meant to be there. They serve some sort of purpose, teach you a lesson or help figure out who you are or who you want to become. You never know who these people may be; your neighbor, teacher, long lost friend, lover, or even a complete stranger who, when you lock eyes with them, you know at that very moment that they will affect your life in some profound way.
And sometimes things happen to you and at the time they seem horrible, painful and unfair, but in reflection you realize that without overcoming those obstacles you would never have realized your potential, strength, and will power of heart.
Everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments or true greatness and sheer stupidity all occur to test the limits of our soul. Without these small tests, if they be events, illnesses or relationships, life would be like a smooth paved, straight, flat road to nowhere. Safe and comfortable but dull and utterly pointless.
The people you meet who affect your life and successes and downfalls you experience, they are the ones who create who you are. Even the bad experience can be learned from.....those lessons are the hardest and probably the most important ones.
If someone hurts you, betrays you, or breaks your heart...forgive them, for they have helped you learn about trust and the importance of being cautious to whom you open your heart. If someone loves you, love them back unconditionally, not only because they love you, but because they are teaching you to love and opening your heart and eyes to things you would have never seen or felt without them.
Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again.
Talk to people you have never talked to before, and actually listen, let yourself fall in love, break free and set your sights high. You can make of your life anything you wish. Create your own life and then go out and live it.
I wish you all the best in your endeavors as well as struggles in life. Have a fighting spirit and never hesitate to get back into the struggle!
AUTHOR UNKNOWN
The trick is to figure out the reasons and learn from them. Something I am not always good at!!
And thanks to all those who are in my life for a reason!!
EVERYTHING HAPPENS FOR A REASON
Sometimes people come into your life and you know right away that they were meant to be there. They serve some sort of purpose, teach you a lesson or help figure out who you are or who you want to become. You never know who these people may be; your neighbor, teacher, long lost friend, lover, or even a complete stranger who, when you lock eyes with them, you know at that very moment that they will affect your life in some profound way.
And sometimes things happen to you and at the time they seem horrible, painful and unfair, but in reflection you realize that without overcoming those obstacles you would never have realized your potential, strength, and will power of heart.
Everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments or true greatness and sheer stupidity all occur to test the limits of our soul. Without these small tests, if they be events, illnesses or relationships, life would be like a smooth paved, straight, flat road to nowhere. Safe and comfortable but dull and utterly pointless.
The people you meet who affect your life and successes and downfalls you experience, they are the ones who create who you are. Even the bad experience can be learned from.....those lessons are the hardest and probably the most important ones.
If someone hurts you, betrays you, or breaks your heart...forgive them, for they have helped you learn about trust and the importance of being cautious to whom you open your heart. If someone loves you, love them back unconditionally, not only because they love you, but because they are teaching you to love and opening your heart and eyes to things you would have never seen or felt without them.
Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again.
Talk to people you have never talked to before, and actually listen, let yourself fall in love, break free and set your sights high. You can make of your life anything you wish. Create your own life and then go out and live it.
I wish you all the best in your endeavors as well as struggles in life. Have a fighting spirit and never hesitate to get back into the struggle!
AUTHOR UNKNOWN
The trick is to figure out the reasons and learn from them. Something I am not always good at!!
Wednesday, June 20, 2012
Enjoying the calm after the storm
And what a storm it was!!! Between my son and family's never ending catastrophes and the decline and resulting death of my sweet mother-in-law, the past couple of months have been a doozy for me.
But things are calming down and I am finally getting back into my routine, back to my exercise schedule, and even eating better (mostly). Now if I can just get caught up at work...
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