My movement specialist is the finest in the area. He knows his stuff. He told me that I am in the advanced stages of Parkinson's which just blows my mind. How did this happen, how did I get here?? I am not eligible for DBS it would not help. I feel like I got a death sentence yesterday even though I know Parkinson's doesn't kill. Or does it?
Don't worry, I don't plan to descend into despair never to come to the surface again. Each day I find something to live for. I have my face although I… read more
With friends like you, who could ever take it away?❤️ And best of all, there is our Eternal Friend. He's the reason I
face each day even when you imagine the worst. It's not a concious thing; I just know that I've discovered an amazing resilience in myself I never thought I had, and that can only have come from God's grace pouring out over me everyday. Thank you as always for your friendship and support.
@A MyParkinsonsTeam Member, I wish I knew where I read this story. Actually, I believe that I have read it from a couple of sources within a relatively short amount of time. Charlotte Elliott grew up in a rather well-to-do Christian family in Britain. They all delighted in serving God whatever way they could; visiting the sick, raising funds for those in need, etcetera. While still young, I think in her 30s, she began to be ill with something that kept her mostly bedridden for the rest of her life of just over 80 years (1789-1871). As her family continued to be busy about the Lord's business, Charlotte was terribly discouraged, understandably. She confided her sentiments to a preacher who had come to visit her. He suggested that she go to God as she was. It was no news to the Lord that she was sick. He explained that God still wanted to "fellowship" with her (Philippians 3:10). She didn't act on that advice immediately, but a few years later, she wrote the words to the song, "Just as I Am" for a fundraiser in which her family was participating. She ended up writing about 150 hymns, but none so popular as this one which Billy Graham made famous as the invitation hymn for his crusades. We use in our Devotions, a hymnal which tells the history of some of the hymns, not including any story for "Just as I Am," though it does have 7 verses of the hymn. As I was typing this, I was curious to see if there were any of Charlotte Elliott's other hymns. I found only the one, but there was another listed by Emily E. S. Elliott (1836-1897), the hymn, "Thou Did'st Leave Thy Throne." The story below it tells us that Emily was the niece of Charlotte. Among other ministries, Emily had a heart for the infirmed, "...laboring on their behalf, as well as a book untitled 'Under the Pillow' which included forty-eight of her hymns specifically for the use of those confined at home or within the hospitals (Psalms and Hymns and Spiritual Songs, Melody Publications, 2018, 2020, Knoxville, Tennessee.) ~This silly site will probably think that citation was some sort of address and block it, but I don't want to be accused of plagiarism. Anyway, apparently, Charlotte, who wrote "Just as I Am," made a lasting impression on her niece, Emily who wrote one of my favorites, "Thou Did'st Leave Thy Throne," all because she was bedridden for decades.
Michael, thank you for caring! Just the amount of time you put into these posts really amazes me. Again, thank you.
Fortunately the doctor's words are not bothering me so; the three therapists that I have been working with have been so amazing and supportive. I just love all of their creative ideas on how to make life better. A lot of days I get up and wonder how I'm going to get going because the pain and the stiffness is so bad first thing. I suppose that's why it's good I have two cats and insist on eating at 5:30 in the morning. :-) You can't ignore that, especially when they are walking all over your body! The morning routine if left uninterrupted, includes a nap that helps reset my thinking and get me back on the course. I then do about 20 minutes of exercise after that and it always feels good, especially while I'm doing it because it goes against the whole idea that I can't move--I CAN MOVE. I am very grateful that even in advanced stage stage Parkinson's, my cognition is excellent. That means I can finish writing my book, I can write my journal, I can talk to people, etc. One thing I struggle with is how I can be of use to God since I no longer can serve as I always did. I do know that I need to give my husband very special attention. We are navigating this new unknown road together and we tend to respond very differently to the same circumstance. His way of showing affection is to do things for me, and he has done so many things! He cooks me dinner every night. I love that. He gets up with me from the couch even though we had both fall asleep, and he lifts me up into his arms. That's one of my favorite moments of the day. He walks me to bed every night. We have our many moments of misunderstanding and we're working on it. The great thing is he is fantastic about apologizing quickly so things move along. He will ask me at the end of the day if I'm still upset about whatever happened during the day and I will say "of course not" because he apologizes for whatever wrong he may have done and that makes me give it up and do the same. I am very confused about my faith right now but I have not given up on it. And I never will.
Michael, you are such a blessing to this group!
First, the weight of what was shared yesterday is real, and it makes complete sense to feel shaken. Hearing that news from someone you trust is genuinely hard. The grief in those words is valid.
To answer directly — Parkinson's itself is not considered a terminal illness. It is a progressive condition, meaning symptoms Show Full Answer
@A MyParkinsonsTeam Member, I'm so sorry that your doctor told you that You need my poem, "I've Got Some Living Yet to Do!" I think it's on my profile page. I can't get to my computer right now because I'm worn out from a scan earlier today, but I will make a point to post it tomorrow. If I can't find this conversation, I'll at least post it on my profile and tag you because, you've got some living yet to do!