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

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.