Sticking my toe into the Meds pond for the first time
Today I started my first Parkinson's drug - Selegeline. 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 tow 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 tomorow, 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? 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!
I am just dipping my tow 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 tomorow, 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? 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!
Replies
My dear CM, oh how my heart aches for you .....
Two thoughts of personal experience entered my mind as I read your entry for today .....
#1 - My MDS suggested that I try selegeline also. That was approx six years ago. There was nothing happening, positively or negatively, after a trial period of a good six months. So, I took it upon myself to stop the med on my own after notifying my MDS in writing and she reciprocated by calling me with her okay.
#2 - Your statement \"I guess this is also a journey of faith and belief. A very long and hard journey I fear!\" Believe me when I tell you .... The very same thoughts were in my mind twelve years ago when it became impossible for me to function without medicinal intervention, and later surgical intervention.
YES, it is a journey of faith and belief, but it doesn\'t necessarily have to be a trying/hard time! As each day, or week, or month presents a differing challenge to you, don\'t cringe in fear hoping that this new anomaly will go away. One thing that I\'m sure you know by now is that these changes don\'t go away, EVER!
In my 36 year travel down the same exact road that you and countless others are on, with new people joining in daily it seems, I have learned to embrace each and every challenge that my PD presented me with. Words Of Wisdom from another PPWP began echoing through my mind on a daily basis: \"TODAY I HAVE PARKINSONS, PARKINSONS DOESN\'T HAVE ME!\"
To most people they are just words. Words with no meaning to them. They don\'t haave PD! To me, those words saved my life by redirecting how I thought about myself and perceived my future. If it\'s going to take a pill/s to get me through a day, then the pill/s it will be! It proved to coincide with my acceptance of the fact that I have PD and that nothing will change that fact until the cure for PD is found.
CM, you aare not alone in your thinking. Many of us have been where you are. WE ARE STILL HERE.
We are, hopefully, the \"faith aand beleif\" to keep you going!
Jim Evridge
CM,
I know how big a step this has been for you, I was agonising over the same dilema 9 months ago. It made it all too real for a while, like I had to face up to it, take responsibility, hold my hand up and acknowledge it - but don\'t worry that all fades away believe me ...... now I take the tablets and still pretend that all is well in denial land!!! I\'m not ready to budge, I know I\'ve got it and so do you but I can\'t see what harm it does to not take on the entire issue just yet, we\'ve got forever to face up to that, so it can wait.
It\'s a worrying time I know, but you\'ll be fine, you\'ll see - I know how awful it is initially though so I really feel for you. I shall be thinking of you CM.
Big hug
Julie
I believe true acceptance of PD is the key to fighting the disease. Denial can work initially, but as the disease progresses acceptance has to rear it\'s ugly head at us. It seems that most PD drugs take about 2 weeks to really kick in, so give the new med some time. However if after a month there is no noticable change in your stiffness, rigidity, or tremors, let your doctor know so that he/she can consider other options. The correct meds do help in daily activities considerably, so don\'t condemn them just yet, though I do understand your reluctance to begin. Afterall, in some ways that does mean acceptance. Hugs, Dan
Hi CM,
My sophomoric opinions. You can fight PD only if you accept the fact that you have PD. Have a neurologist that you trust and be honest with your neurologist. I trust my neurologist. However, my father-in-laws neurologist I did not trust. We dumped him. (BTY all my doctors are women.) Take your meds faithfully, exercise, and stay positive.
Please take care and Fight PD,
Joe
Thanks everyone. Lots of good advice. I especially like your words Julie! I really like my land of denial and suspect I will flee back to it sooner than later! ha ha It must be a gal thing.
2 days down and no side effects yet. YAY! (knock on wood!!!)
Silverfox - it is good to hear from you. You give me hope. I always appreciate your perspective and hope I can stay as positive as you are for as long as I have to deal with PD. You and the others here ARE my faith and belief - and such a great inspiration to me. Thanks for your words of wisdom. They are always a huge help to me.
Don\'t worry Joe - I am fighting - even when I deny i have it, I still fight. Trusting Neurologist - now that\'s a different story. I trust the ones I have to give me their best advice based on their training and experience. However I am learning to trust my gut instincts (after a lot of research) to tell me what\'s right for me. Most of all I trust God to guide me and to comfort me through this long journey. I know he is the one with the real answers for me.
Dan, you said the exact same thing my Neuros said, takes about 2 weeks, but give it a month to see if it helps any of the symptoms. You seem to have some experience with this! lol However, since this is a MAO-B inhibitor (or neuro protector) they told me I may not see any difference in my current symptoms, but hopefully long term it will help slow things down. (YUP - its a theory only - no real proof it works that way) For now I am buying into the theory - as long as there are no horrible side effects of course.
Hugs to you all!