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Getting Back to “Normal” and Doing Some Soul Searching — 17 Comments

  1. I’m sure you are right that meeting other Parkies would turn out to be a positive experience. It’s just going to take me awhile to match my head and my emotions. Maybe by the time I have an accurate diagnosis, I’ll have myself talked into it.

    You always say such nice things about my posts, and I do appreciate that. I don’t know that I deserve such a compliment, but I am glad that something I write helps you in some way.

  2. I posted a message on “Patients Like Me”. Have you had your appointment with Dr. Watts. I’d like to know how your appointment went. I am in the4 process of reading your blogs on your website. I enjoy readng them. I wish that when I was diagnosed in the 1980’s, that I researched and became knowledgeable about PD. I haven’t met or seen any one who has PD. I am interested in finding a support group. Do you have a group that you meet with. I think tha those of us who have had PD for a long time (myself 23 years) can help those who are newly diagnosed. I also think that we can all help each other. I’d like to know what you think of this. Please let me know how your appointment goes. I’ve seen Dr. Watts before And he is a very good doctor and nice too.

    Is it ok if I leave my e-mail address on my next comment to you?

    Myra Elaine

  3. I understand exactly how you feel about meeting other people further advanced in the disease than you are. Unfortunately for me, my job makes it impossible to avoid these people. Yet at the same time, I am fortunate for having met them. Yes, I see a reflection of what might be me in the future, but I have learned that the future, more often than not, looks nothing like what I imagined. It is usually brighter, and rarely, if ever, takes place in the setting I envisioned.

    When it comes to meeting other PWP, no one can tell you what to do. You know what is right for you. However, you may find that one of two things will happen if you do meet with them. You may have a very positive impact on their lives, or they may have a very positive impact on yours…or perhaps both.

    Either way, I very much enjoy your blog. I find it to be honest, comforting and heart felt.

    Oh, and as for DH – if he worried about you for any other reason than love, it would be meaningless.

    My best wishes for the both of you…

  4. Feeling apathy when you’ve fought as hard and as long as you have, DB, is normal, I think. I often feel the same after a long haul.

    It’ll pass, and you’ll get your oomph back. It’s the waiting right now that’s probably got you discombobulated, as well.

    Take care, DB…I think of you often.

  5. I’ve not been interested in going to a support group, Myra Elaine. I use the Parkie blogs that are in my sidebar and the PLM site as my support group.

    As for putting your email address here, please don’t. My message on PLM will explain.

    My appointment is the first week of April. That was the first appointment I could get back in November or December! Everyone says good things about Dr. Watts, and I’m looking forward to seeing him.

    I’m just not waiting patiently.

  6. Marion, I asked you once before if you thought we were twin souls. Your use of discombobulated reminds me of that question. I haven’t heard that word in YEARS!! It is such a descriptive word, isn’t it? And you are right – that’s exactly how I feel, like the ground has been pulled out from under me, and I’m in a swamp with no idea where to step on solid ground.

    I get these spells of apathy from time to time, and I don’t really think it’s a PD side effect with me – it’s just ME.

  7. Hi, Thank you for dropping by on my blog, I appreciate your comment. It was a challenge and the ones who asked me do lead it were almost freaking out as I was only able to send in my piece the day before the party. But anyhow, I think it turned out alright too.

  8. Just to make sense of the comment silvertooth26 made – I had commented on a prayer given in a business context to an audience of many religions. It’s very generic, but is worded so each person hears what they want to hear.

  9. I hate that you have to wait so long to see this doctor, but it may well be worth it if you get a clear diagnosis. I must have missed where the question as to whether you had PD was raised though or my memory is overloaded.

    I thought what Joe said rang true. When I worked with a senior center I looked at those I helped and thought, “Is this the face of old age?” Some days were very sad. Yet, even over 10 years later, I still remember many of the dear souls I crossed paths with. My life was better for having known them.

  10. Here’s the post about the question about the diagnosis: This is a Hard Post to Write

    Hey, I’ve not been keeping up with anybody the way I would like to, so there’s no need to apologize at all! I’m sure you and Joe are right. I certainly felt like I grew up taking care of our parents, and I considered it to be one of the best things I’ve ever done in my whole life. My spiritual life grew tremendously as I lived with eminent death so closely.

  11. Hey DB – my hubby has been avoiding meeting other pwp until recently. His own brother has parkinson’s plus (msa) and it’s been extremely difficult for my husband to visit with him. Although there is no indication as of yet that dh has msa like his brother, but still, when it’s right there in front of you, you can’t help but start thinking about things. But then just last week he went to his first pd support group and it was a really positive experience for him. I guess you just never know how you’ll react until you’re in that situation. I think if you wait until you’re fully ready, you’ll be just fine!

  12. I am sure you are right, Mary. When I am ready to participate, everything will be fine. If I get accepted as the Physiatrist’s patient at Lakeshore Rehab, I imagine I’ll see some Parkies there. I never have seen anyone at my Neurologist’s office who looked like a PWP.

    Thanks for stopping by. I know how busy you are.

  13. As long as I have had PD I have never met anyone else with PD. Also I have never seen anyone (only on a couple of TV specials) with advanced PD. I guess I avoid places where I may meet someone and I didn’t want anyone who doesnt know me look at me and can tell that I have PD. I think that now I may want to meet others.

  14. I didn’t have that luxury, Mem. Mama either had Alzheimer’s or Senile Parkinson’s – Take your Pick! Plus, one of our Deacons died of Parkinson’s only a short while before I was diagnosed, and we had all watched him decline over the last few years he was able to come to church. And, there is another Deacon who has had Parkinson’s for some time, but is progressing very slowly. So, I’ve seen the worst that it can bring, and an example of how benign it can be.

    Each is different, right?

  15. It’s so wonderful, Mem, that there are Parkies like you who really are in good shape, and getting better.

    I fear people getting impatient or uncomfortable around me, so I am quick to tell them I have PD. I don’t like the, “I’m sorry,” response that this usually brings. Basically I just ignore they said it, as I have no idea how to respond to it. I don’t need their pity or sympathy, but I do hope to have their patience and consideration.

  16. My PD has progressed slowly. I am doing better now than ever before. If I wasn’t doing as well as I am, I believe I would have withdrawn from society. I guess it is my pride. I never wanted anyone to know and I never wanted to talk about it. I would not even say the word, or admit that I have PD. I am very stubborn. Sometimes I want to do what I want, and it is not always the best thing for me. I don’t know how I would take seeing what you have seen and experienc- ing what you have experienced.

  17. I too have Parkinson’s, and I decided to find out all I can about the disease. I list my findings in my blog:
    I am sure you will find some interesting items there as well as encouragement! God bless!

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