Feeling "stuck in the middle" about now....
Maybe just my mood tonight, but after catching up with posts from the PD support group I am feeling a little like there is no one out there close to where I am at with the PD symptoms & daily life right now.
Though I received my diagnosis in Feb 2011 (after years of symptoms), my neuro & I discussed and agreed I could hold off on the PD specific meds for now. And, while I gather a lot of knowledge from reading others experience, it just isn't where I am right now with this disease. I do take a couple of meds to support symptoms, but they are not actual PD specific meds.
So many of my symptoms are those not seen by others - mostly my husband (and, sometimes my daughters) know what I live with on a daily basis. Symptoms like fatigue, inner tremors, "head knocking" - mostly on weekends when I can slow down & the work week catches up with me, loss of smell/taste, constipation, a short temper when feeling stressed beyond what I can handle at that moment, etc., etc. Then there are the falls and tremors that are obvious to those I work with or am around enough they get to witness these lovely outside symptoms!
Feel like a jerk to complain. But, truly I am not. Just wish I could find a few someones that can relate to this stage of PD and ways they are making it all work out. (Still working/meds taking/dealing with family & friends that don't take pd seriously since your symptoms are not visible yet, etc....)
Though I received my diagnosis in Feb 2011 (after years of symptoms), my neuro & I discussed and agreed I could hold off on the PD specific meds for now. And, while I gather a lot of knowledge from reading others experience, it just isn't where I am right now with this disease. I do take a couple of meds to support symptoms, but they are not actual PD specific meds.
So many of my symptoms are those not seen by others - mostly my husband (and, sometimes my daughters) know what I live with on a daily basis. Symptoms like fatigue, inner tremors, "head knocking" - mostly on weekends when I can slow down & the work week catches up with me, loss of smell/taste, constipation, a short temper when feeling stressed beyond what I can handle at that moment, etc., etc. Then there are the falls and tremors that are obvious to those I work with or am around enough they get to witness these lovely outside symptoms!
Feel like a jerk to complain. But, truly I am not. Just wish I could find a few someones that can relate to this stage of PD and ways they are making it all work out. (Still working/meds taking/dealing with family & friends that don't take pd seriously since your symptoms are not visible yet, etc....)
Replies
I am sorry you are going through this. While I don\'t have all the same symptoms, I do have some. I seem to be on the more classic road with this disease with the hand and leg tremors. My hand flaps some days like a fish out of water. So - I am def. not hiding it much from others these days.
The inner tremors for me are way harder to handle than the outer ones. I feel so unstable when I have them. Still not on any PD meds yet but will start them in the next couple of months. Still working, but only part-time. Yet that is more than I can handle some-days. The fatigue is maddening and I am back to drinking diet cokes after weaning myself off them years ago. sigh
I am sorry you aren\'t finding others you can relate too symptom wise. We walk what feels like a lonely walk sometimes. But you are not alone here. While we may not have the same symptoms - I feel a connection to you cause the PD bomb dropped on us the same time.
I have missed you and wondered how you are doing. I am really glad to hear from you. Hang in there!
Hugs!
Hi, i guess we really haven\'t talked much... i can really relate to a lot of what you say... There are so many different symptoms with this disease and it seems like no one really has excatly the same ones at the same times... I myself started with a simple tremor... now without my meds that tremor is like CM said a fish out of water flapping around like crazy... i have progressed to the next stage as my tremors (though not as bad) have started on the other side... i push myself through every single day... there is always fatigue... i fight it with exercise... i just started stuttering... i get frustrated when i can\'t get the words out ... the word is right there and i can\'t spit it out... so i find myself getting very self conscious talking to people i don\'t know... i just recently started freezing when i walk (another sign that i have progressed to next stage) it only happens on stiars with me so far though ...my foot starts to go down and stops... my brain tells it to keep going but it won\'t... yet another frustration.. i refuse to give in to it though.. i stopped working but decided to go back part time... this terrifies me for so many reasons... i can still function but when the meds start to wear off there is a very off time ... and after the meds there\'s the fatigue... but i refuse to let this thing totally take me over... you have to fight and you have to stay positive ... you learn to adapt to each new thing it hands you ... and this is a wonderful place to share your feelings... you will find there are people in all phases of the disease and lots of information sharing here... good luck to you and hope we can talk soon... hugs... paula
Wow! Just read the comments from you two ladies and cannot tell you how they lifted me up! Sorry...just have found myself having a harder time with the dx than when I first received it a year ago February. Probably because of new symptoms & the progression I am more aware of now. But, mostly from the lack of understanding by those closest to me. It is hurtful to me to hear, \"Oh, I know, it\'s the pits getting old, huh?\". Friends don\'t seem to get it that having PD is more than what they are experiencing as part of the normal aging process. My exhaustion, fuzzy brain, having difficulty finding the right words when trying to speak, falling down, etc. ARE different. Guess maybe I should have that hard conversation with my best friend and see if I can get her to understand??? That is why I love this group - and especially the two of you - for understanding (and letting me vent!). I really do not want a \"Pitty Party\" - just need to connect with those that understand.
I can totally relate to your symptons. Years before I was diagnosed with PD. One of the symtons was loss of smell. Didn\'t realize it until someone said can\'t you smell that? I was diagnosed in 2009. PD started to progress started with little finger on my left hand would twitch. Then tremors inside. Always to myself That I was studdering, Freinds assured me I wasn\'t. Now my Best Friend/Brother-in-law( Married the girl next door when I was growing up) He can tell when I\'m having a bad day. It\'s hard to put sentences together. Tremors come and go. At first I was short with people(which is totally not me) had to learn patient. I find the constipation one of the worse. I eat oatmeal in the morning that has helped. I go to Tai Chi classes and workout everday. Yes I have to push myself. Or I would just sit stare. It\'s a horrible disaese. But I wouldn\'t give in. I have PD: It doesn\'t have me! Anytime you need to vent, I\'M a good listerner....