re-evaluation monday
 

i am going to ohsu in portland, oregon on monday to begin a re-evaluation of everything. side effects, med interactions, symptoms, stress, misplacement of dbs wire... yada yada yada. maybe, just maybe... they will find out how to put the puzzle of "me" together the way it is supposed to be. please, say a prayer. it has been a 26 year long journey. maybe it is the end of this road and i can say "i dont have pd and it doesnt have me." or maybe i will hear the usual, "we cant figure out what is wrong with you." i know one thing.. i am so tired of this that i will not leave that building until i get a better answer than all the years of "possible" or "atypical" or "idopathic" or ANY words that are vague and leave way too much room to throw a question mark in there.

i survived something very few people do. when i was 15 i had shingles/menangitis/encephalitis. it was acute and i will never forget that pain as long as i live. they didnt think i would make it. i wasnt supposed to. they told my parents it was not likely that i would. but I DID! and a couple years after that, i had menangitis AGAIN! and I lived through that too! and dammit, i wanna know what got fried. i know something must have.

i am not going to settle for some crappy label because they dont want to take time to look at my particulars. over ten years ago a mds told me i had an anxiety disorder not pd and i ended up attempting suicide and put in a mental hosp for ten days because of the drastic med changes. almost died there too. but i DIDNT. i had a petscan by another mds who told me i had multiple system atrophy and had about five years to live. I went to another mds who stated i needed to face my dxd of "advanced pd" and i needed to find an assisted living place to be taken care of. they have screwed with me too long. i have been on far too many different medications and suffered with far too many interactions and side effects. i have run the gammet in emotional changes due to these damn meds. i even had one of the dbs leads put in the wrong spot and after 26 years of **** ups.. I am past exhaustion. I AM MAD!

i KNOW i can be better. i know because i was! a member of this site can testify to it... cleveland clinic can testify to it, as well as dr freidman of rhode island.while there i was virtually symptom free. i wanna know what did it. because when i came back home, the symptoms returned. along with some new ones. like grand mal seizures and extremely low blood pressure and total lack of balance creating instant falls.

i am armed with ammunition in the form of 38 pages of documentation from the cleveland clinic. doctor notes, statistics, nurse observations, and bunches of stuff that point away from the pd dxd. i have been to every movement disorder clinic in the seattle area. they have nothing more to offer me. i have an ace to play at ohsu. that is where my botched dbs was done. and i just happen to have a friend in portland who introduced me to a pulitzer prize winning journalist who writes in portland. and has taken an interest in this dbs fiasco. the way i see it, that fact alone may open there eyes to me.. ME! not some stupid label.

please.. say a prayer.

please

Best wishes coming your way
 

Harley, please know that warm thoughts and good wishes are coming your way. You have been through so much - too much! I hope only good things for you. :hug:

Kind regards, Jean

Not saying you have this but...
 

In one of my generic health newsletters I subscribe to it talked about how some people are so incredibly sensitive to allergens, chemicals, pesticides, that a tiny amount will do them in. The example was a woman who developed some very strange symptoms no one could explain...when she moved out of her house to have some work done, incredibly, they went away. When she moved back in, they returned. She moved out again and had the house completely cleaned with natural, organic things, but again, when she moved home, the symptoms returned. In fact, her daughter went over there to get a shirt from the closet of the newly-cleaned house and when the woman put on the shirt, her mysterious symptoms re-appeared. Needless to say, she moved permanently.

Who can say whether you have a sensitivity to something? I have often wondered how many PWP might "get better" if they moved to a different locale, cleaner air, less crowding, better non-flouridated water, etc.

I hope you get the answers you seek and please share with us what you find out. I am personally amazed you have been dx'd with PD for 26 years-don't the MDS, at least one, take a skeptical view of your dx in light of that amount of time? I guess no one wants to say 26 years' worth of medical treatment/dx was wrong, boy, would that doc ever be in the medical establishment doghouse.

You have my prayers, Harley
 

************
Honey,

You may not realize it, but asking for "Divine Intervention" could be the very thing for YOU.......mortal doctors may only see the outer human-being, yet Our Creator knows ALL about US!!! I pray to inspire someone with the burning desire to find the CURE that is out there just waiting "To Be" Found sooner rather than later! Keep looking forward and UP!!!

Will say an Extra-Special Prayer for you tonight; God bless you, too.

Mike

P.S. I am "Southern" so it is just 'natural' to call a Lady Honey, Honey. Hope you receive it as such.

Harley,
I wanted you to know you are in my prayers, too. I know you have been thru a whole, whole lot - but I do believe that the gestalt of your life can change, and that you can- that you are becoming who you need to be. Don't stop now, girl.
Fiona

jean.. i will definately let anyone interested know.

lurking.. i have often wondered if it isnt environmental. washington state has the largest population of people with ms. when the rain begins, i can definately feel a change. and the same when the sun comes out. the humidity isnt bad, but there is alot of mold and mildew about.

the docs have laid other dxd on me as i stated. anxiety disorder, conversion disorder and epilepsy to name a few. i will take partial blame here as i have not followed through with their treatment plans for one reason or another. i am scared to death to be honest. i know how to live with this pd dxd. though i dont want it, i know how to live with it. i have had it so long, i dont think i would know how to live without it. at first anyway. :)

mike.. i am His child and my life is in His hands. i am also stubborn and need to remember that He cannot do His job if i keep trying to do it for Him. there is some kind of purpose He has for me here. im not sure what..

as far as calling me honey.. i dont mind one bit. actually, it is sweet. i have been called alot worse lol :) i have my waders on standby for when i need their protection when the waves of bull crap spill on my shore. "sigh"

fiona..
you got it sweets. im not gonna stop now until the door is wide open

Glad you don't mind being called "Honey", Honey!
 

Harley,

Thanks for your kindness and taking my words as they were meant to be as "kindly". I was taught to try to treat others as you want to be treated, as in the "Golden Rule". Think most people today think it is a brass ruler....LOL !!!

I have many health issues besides PD, that was just the latest in a long list that started with spinal cord problems reaching a critical point in late 1998. Wow.......it is hard to see that almost 12 years have past since my back injury, it was a herniated lumbar disc. Long, long story attached to my "Bone History"; hmmm.......I could write a book......ha-ha-ha!!! Maybe one day I will.

Enough typing for this session, fingers are getting stiffer with each word. Take care and keep looking forward and upward because God is in control of ALL!!!

Mike

Warning: religious content!
 

Laura Jean, I have not stopped praying for you and likely never will stop. I am going to church tonight and will speak your name aloud at the prayers. I believe I'll also ask for angels to guard you--you know, the big guys with the swords.

Peace.

How did it go?
 

Harley,

how did the appointment go?

jean

well, the 1 1/2 hour appt turned into 4 hours and the conclusion was.........
they dont know.

at least the definate "parkinsons disease" dxd didnt come. they gave me the good old "extremely atypical idiopathic possibly non progressive maybe post-encephalitic strange form of pdism." being somewhat overdramatic here with the concensis but in essense thats where we left it.

they saw me off meds, and my reaction to stalevo as it was absorbed then finally on med-- stalevo. they watched me walk, do all the gymnastics they put you through, tapped me everywhere they usually do and we talked through-out, they heard my side of not believing it to be pd, i heard their side of what they meant by pdism. the doc actually contributed her opinion of using the "ism" for a dxd.. she hates using it. "its old termanology that should not be used any longer." that was very much agreed upon. i talked to her from my side of the fence and she listened. finally i let out the tears of frustration that have laid behind a 26 year wall that had been built between the patient/doctor relationship. and once i started, it was hard to stop.

by the end of the appt (at 7:00 pm after everyone else had left the building) me, the doc, the head doc and my friend taking notes and asking her own questions; were all brain-fried (pardon the pun) but we had reached a level of mutual respect. the masks came off and it was no longer a relationship between doctor/patient, but rather person to person. both sides gained insight to this horrid thing too long called "pd" so we left it at this:

i need extensive onsite evaluation. this would require me being able to be available for multiple visits at a same location. i will need to be open for neuropsych evals as well as conversion disorder evals. they in turn will no longer label me with pd. in the interum, i will have a neurological disorder. until i am able to get to that, i will continue with stalevo, artane, clonazapan and celexa, dropping flexerall and mirapex.

i think i got what i needed out of the visit. i will begin this later down the road. my mother has 3-6 months to live. my focus needs to be with her.

thats all for now folks

Laura, I think both you and the docs got and gave everything possible in the time you had available. Let your heart focus on your mother for now. She is blessed to have you able to do that freely now. I will keep you both in my prayers.
Robert

i agree with Robert. And do focus on your mother now. This time with her is precious. May the coming months with her bring you both peace.

Jean :hug:

the hard part is that i really wanted her to know her daughter did not have pd when she left us. i wanted her to know i would be ok. i didnt want her to worry about me any more. i hoped and prayed i could tell her so. i wanted to be able to go over there and help her without seeing the look of concern in her eyes. she needs help, and i want to give it. freely. i really do. without the mumbo jumbo crap that my body goes through.

this is so very hard.

Honey,

Yes indeed watching a dear beloved mother slowly prepare to leave this 'body' and world as we know it is painfully hard. Skip FORWARD: There will one day be a "NEW Heaven and a NEW Earth". All things here are temporal, therefore look toward "The Day Ahead" when all pain and sufferings shall cease "To Be No More". To GOD be the Glory, Great Things He Hath Done!!!

have stopped taking mirapex. horrid horrid withdrawels. knowing what the symptoms are for the withdrawels makes it easier. been 7 days. easier today than yesterday. cannot express the reason why now.

how are you doing it?
 

Harley,

When you are able, could you please share how you are getting off the mirapex? And what it is like? We have tried a couple of times and not been able to do it yet. It is horrible, and we couldn't do it despite really WANTING to get off mirapex. How much were you on and how are you titrating off of it? Have you been able to function at all, and have you had to take gobs of tylenol or some other substitute for the pain? Anything you can share would be very helpful to the wanna-bes! Thank you.

Harley keep on fighting the "Good Fight"
 

Mirapex is hell getting off the 'merry-go-round' once you have been on it for any length of time. I found out the effects before I was too far along thank goodness, yet it was hard enough still. Please keep us posted how you are doing. I am concerned when I don't hear from you one way or another.

first off..my docs do not know i am doing this, so what i say is definately not to be taken as anything sound. i am just fed up after my trip to oregon. i will explain later. i was on a dose of .5 x 3 daily when i went to my mothers. i forgot the bottle of mirapex so just decided to stay off. the first couple of days it wasnt too bad, but began to really feel the harshness of the withdrawel on day 3. so i came home. day 4 and 5 incredibly hard feeling stabbing pains in my legs and my nerves felt like they were exploding. i was mainly in bed most of the day. yesterday still bad and i made myself get up and try to walk. today, probablya tad better. walked outside a bit, not as much pain. i found flexerall, a muscle relaxant is helping. as is ibuprofan.

knowing what withdrawels to expect and knowing i will need to go through hell to get free of that med keeps my mindset pointed in one direction.. resolve. i am not giving up or giving in. i am tired of the label. i will be free of it. after mirapex, then will come stalevo.

Thanks and you can do this
 

Honey, it will be worth it.......if I can help let me know. Keep THE FAITH!!!

ohsu (oregon health and science hosp) wants me once a week for three months for intense and extensive study which will include pd and conversion disorder and all involved with each possibility. they want mee to have temporary lodging in portland and they want me to begin as soon as i find lodging.

my mother is getting worse, end of chemo and having fluid drained weekly now. doc says 4 months tops. stress of this is killing me. need relief. stress of the thought of leaving her is killing me..

omg
what do i do?

still off of mirapex.

Finding Peace

How do you heal, my God?
The gust of Your breath penetrates my air
and gently, my reality is revealed in the mist.
The residue from tears evaporate in Your sun
leaving a rainbow from each day’s hard survival.
The hues have been identified with single significance.
Their combined brilliance clarifies my hindsight.
Yet I am in pain.

Will You show me purpose, Lord?
I stand far from charred remains of shipwrecks
scattered hither along the shore of my island.
The vivid detail of their stark silhouettes
wane and flex with important declaration.
Where decisions have been altered by passages of time,
The distance is not too far for memory.
Ghosts still wander where I have declared mutiny.

Is my faith enough, oh God?
I have nothing to offer than what You have given me.
Only by awakening to the importance of all truth
can I discover the embodiment of You complete.
These potholes of quicksand that surround my stance
Solidify when I step upon them in Your name.
My purpose becomes only a mere vision
When my pride lets go of Your hand.

Where will I find peace Father?
Too many crossroads and interruptions of intent
have broken my need to analyze what this life is.
Idealisms have become conjectures lodged in my throat
rendering me quietly in wait for maturity of thought.
I will remain where I stand in silent solitude
to hear the whisper of Your voice.
I give this all to You.

© Laura J Dean

Letting Go is so hard. God bless you & your Mom. FG

Your mother will not be present in this world
 

Harley,

Your mother will need your support. As frustrated as you are, perhaps God is teaching you patience to stay and help your mother pass on. As uncomfortable as you are at this moment, do you truly believe that your mother will view you as being strong if you choose your health over helping her? It takes more strength to put your fears and discomfort aside and put your mother's fears ahead of your own. Your show of courage in doing so will ease your mother's fear for your ability to deal with the stress of living with a chronic illness.

If loving and respecting a parent is placed higher than one's personal fears, The Lord's primary commandment will be fulfilled. Your Mother may feel more at ease with your ability to deal with life if you take the more difficult road. You will be comforted when your mother died, knowing you put her first.

May you find peace,
Vicky

Harley,
I found getting off Mirapex the most challenging so far - I had to do it very, very gradually. Now that's just me and where I was at, and each person is different, BUT don't be surprised if it takes you a little while. But it is possible and your efforts will be rewarded. About Stalevo, I reduced 85% from a pretty high dose this summer - I found that mucuna pruriens is really helping me reverse the toxic feelings that Stalevo gave me. And the mucuna definitely has helped with the post-Mirapex depression and apathy... I think the more nutritional support you can get, stuff like ginger, curcumin, ginseng, camu camu, aloe vera - all of these have been essential to me.

There is life on the other side. I found that many of my feelings about my dependence on the meds have been related to my complicated feelings about my mother -directly related - and hence grandmother, etc. I know this might sound like a bit of a conceptual stretch, but in my case, it was so true. PM me if you want to talk ever... Thinking of you,
Fiona

Hi again-

I just wanted to say that dealing with my own complex relationship with my mother and each of our illnesses has been pivotal for each of us. I don't know what your relationship with yours is like and therefore could not advise you what the best way for you to honor her life with gratitude is. There are many variations on what the best path may be, and you have to open your whole soul to understanding or gaining insight as to what is most needed, what is the most healing gesture - action - at this moment.

My Swiss doctor says the strongest drug of all is the Mother.

For me, my whole life I have felt like a lightning rod, grounding and draining the trauma of my mother's life (not her fault - she had a way lot on her plate), AND my grandmother's and great-grandmother's. But this is my chance to heal those cycles of pain so that they finish with me. I feel strongly this is why I never had my own children. But the answer will not be for me to pass away, still sick. That solves nothing. By healing myself, I heal her - all of them - also. They all sacrificed much in their own ways so that I could be born. Becoming well again is the truest way I can pay back that sacrifice and honor their lives.

Please know that I am saying all this with utmost love for my own dear mother, who suffered in a wheelchair forf 15 years because she could not stand the thought of getting better if I couldn't be as well. We are all trying the best we know how to do, and the subplots are enormously varied and strange. Your right answer will come, I am sure of it. I wish you both strength, peace, and great comfort in your bond of true love.

Oh, I have just one more thing to add...and please, I don't want to take away at all from the gravity and pain of what you are facing. I think that helping our parents pass is the most difficult and most loving task of adulthood. In my mother's story, for 15 years she was wasted away with very painful rheumatoid arthritis, hands completely deformed, legs wasted away to almost no flesh at all. I prayed and prayed that somehow she might have some good time left in her life...it was my prayer before any other. But I certainly couldn't imagine how it was going to happen. She and the doctors had given up on each other.

Last year at age 81 she saw a new doctor, and he felt it was time to give her a couple of new knees. Now she's weeding the garden and walking around the mall. She just rejoined her church this past weekend. I am saying this because life and death are after all quite unpredictable. God bless.

huh? dont quite know how to respond fiona

Harley,
no response required necessarily. Although I don't know you, I feel like I care deeply for you and your situation. But I don't feel that I shoulld tell you what you should do, nor how God or anyone else will see you most favorably. All I can offer is my own experience, some things and ideas that have helped or are helping me, with the thought you never know if something will strike a useful chord for someone else. And maybe it does none of this - and in that case, please, just skip over it, and never mind. I am not offended.

I offered the experience about my own mother because while different than the situation you are facing now, it was something that I was in such deep despair about and prayed so hard for with no possible happy solution in sight for so long. I certainly thought my God had forgotten us. Then things suddenly turned and became very different from anything I expected. This is not to diminish the gravity of this time with your mother, and you have my deepest empathy about it. Again, I can't say do this or that - all I can do is say here's what happened to me in a somewhat related situation (direly sick mother, me getting off Mirapex at the same time...) in case that what happened to me opens up anything for you at all.
bless you, Harley. You are such a valiant light.

i received a phonecall from april sweeney from the psychiatric dept of ohsu. they want me to become involved in a 3 month once a week session regarding conversion disorder. i also talked to a social worker, jason, who is attempting to get lodging for me there. if none is available, i have found a ride to and from the facilities via the train. this will be quite costly and exhausting for me so i am hoping that better accomodations will be made. it is only a 2 hour train ride, so i may return home on short notice.

i am still off of mirapex. the balance issue is much better. a couple nights ago, i accidently took 4 mgs clonazapan instead of 2. i felt so much better the entire next day that i barely felt the urgency for any meds. i did the same thing last night and again today, needed less meds. when i did take the stalevo 50, i had huge dyskenesias and broke into a hard sweat.

i saw dr ali samii at the uw today. my chief complaints for a long time have been horrible nerve pain in my legs and my feet. it is as though the nerves are exploding. recently this has been accompanied by stabbing pains in my legs and feet. dr. samii observed my movements and he made these recommendations. i was to stay off of mirapex and titrate down on stalevo 50 (lowest dose there is) from 3 a day to 2 a day. if this does ok, i may wean off completely. my dbs is to be removed so that an mri can be done on my spine. dr samii believes this may be the cause of my leg pain. my clonazapan has been raised from 2 mgs at bed to 3 mgs at bed and i am to have a sleep study done and if no sleep apathy is showing, i can go to 4 mgs at bed.

hhhhhmmmmm.. could it be????? NO PD?????

YES, indeed it could be NO PD!!! You have known this fact all along in the back of your mind. To ERR is only Human after all.......Forgiveness is Devine. We have to make the best of each moment we are blessed living; with or without PD. Seek and you will find; knock and it will be opened.