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Seeler's complaints

Discussion in 'Health and Aging' started by Seeler, Nov 20, 2018.

  1. Seeler

    Seeler Well-Known Member

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    Over in a Room for all a few people have inquired about my health. I promised that I would get back to them with a bit more info - for those interested. Not everybody wants all the details when they ask "how are you? "

    Short answer - I'm doing fine. How are you?

    Long answer:

    This has been a difficult year for me. It was late in February or early March that I first developed a pain in the side of my neck – a crick or spasm of some sort. Although it hurt, and I didn’t worry too much about it, expecting it to go away after a few days.


    I mentioned to my neurologist but she was not too concerned either. Try heat and/or massage; give it time.

    Physiotherapy? My family doctor put in a request at the hospital.

    To Nova Scotiia-pain constant but bearable. Treating with heat and Voltarin massage.

    Home again. I phoned the hospital and found out I was on a waiting list for physio. Arranged for some private physio which I could not afford and the pain kept getting worse. Cancelled after fourth visit.

    Seelerboy came home for a planned visit. Almost his first words after getting off the plane and seeing me was What’s wrong with mom? Does your neck hurt?

    My Parkinson’s seems to be to be getting worse. Ordinary housework is getting hard for me and Seelerman has taken over more and more. Bowling started in September and my average this fall is around 58 or so. In the previous seven years it had dropped from 86+ to about 70, about 16 points -. In just a few months it dropped over 10 points. Not that I care that much about the numbers, I bowl for fun, fellowship, and exercise, but it does indicate a problem with either my balance or coordination or both.

    Meanwhile, my family doctor ordered x-rays of my neck. Beside the spasm in my neck and shoulder, apparently I have a problem with some of the bones in my neck -confirmed by an MRI . And arthritis and the pain is worse.

    Physio at the hospital, and covered by Medicare, has had some effect, but I am now on Tylenol three.

    I will see a neck specialist soon. And after Christmas I will be starting a physio- program one-on-one developed especially for Parkinson’s patients.


    In the meantime, I try to carry on living a normal life as much as possible. We still square dance and bowl; I still volunteer at the church, make meals at home, go out to breakfast on Saturdays, visit with Seeler girl and grandchildren. And follow Wunder Café to. And struggle with the Dragon.
     
  2. Seeler

    Seeler Well-Known Member

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    ·


    For those who might want to know a bit of the background story I wrote the following for the Creative Writing group I am part of.

    What are you thankful for?


    Inspired by Mandela’s Thanksgiving thread on the Wonder Cafe, I’ve been thinking about what I am truly grateful for, and realizing that it is the last seven or eight years of my life. When I was first diagnosed with Parkinson’s and learned something about the condition I thought probably I had about five good years ahead of me, and then possibly another five years of declining health. I didn’t want to look beyond that. I have had over seven good years.

    It was a good time for us. Our daughter was finished her treatment and cancer free. We were getting settled into our retirement. We had a few trips to Florida to break up our winters (been there done that). We had driven across Canada to the West Coast, our first trip west of Ontario. And it was wonderful. We had visited Newfoundland for the first time. We were both enjoying good health. My bowling score was in the mid-80s and I hoped to increase it after cataract operation and implanted lenses enabled me to see the individual pins for the first time in my life. I was active in my church, enjoying book club and writing group, Bible study and discussion, working with the less fortunate, and helping out with the children at vacation Bible school. I had a part-time vocation and a bit of income from doing pulpit supply as a Lay Worship Leader in several postural charges in the region. Yes, life was good.

    Then I noticed a strange twitching in my left thumb. I mentioned to my doctor during a routine visit and he thought perhaps I should exercise it more squeezing a ball. The thumb continued to twitch and I noticed a twitch in the back of my hand. Before long there was also a twitch in my forearm. I mentioned this to a nurse practitioner that I knew and she suggested that I bring it up again with my doctor. He mentioned that he suspected Parkinson’s and that he would refer me to a specialist.

    I really didn’t know anything about Parkinsons at the time. Oh, there an acquaintance in the church who I knew was struggling with the condition. I noticed him using a cane in the building and a nifty electric scooter to get around outside. With a common ailment we shared some support, until his voice grew so weak (and my hearing deterorated) I had a hard time hearing him to carry on a conversation.

    Another acquaintance, during a long drive to a conference, shared the story of a relative’s long drawn-out, difficult death from Parkinsons. ‘A terrible disease’, she declared before I had the opportunity to tell her that that was my tentative diagnosis.

    As my tremor increased it was no longer simply strange and interesting, but annoying, not only to myself but for anyone near me. I had trouble reading; the newspaper, magazine or book shook too much. I noticed some stiffness and difficulty getting my fingers to do what I wanted. Occasionally I spilled soup or coffee; I got food stains on the front of my shirts. Sometimes I couldn’t thread a needle, or fasten my in my bra and had to ask for help.

    Unfortunately, when I did see the specialist, the diagnosis was no longer tentative. I was in the early stages of Parkinsons. Medication would help. Before long many of these early annoying symptoms were under control.

    I decided that I would be up front about this, so I told my family, my friends, and the congregations where I did pulpit supply. Most were supportive. The churches all reassured me that they wanted me to continue leading worship and they still continue to call me. However, one woman who I considered one of my best friends at the bowling alley immediately started treating me differently and told me ‘the medication you are on will make you suspicious and paranoid; you will have to watch out for dementia.’ In another group that I belong to one woman stated in no uncertain terms ‘if you Parkinsons you already have dementia’. I don’t think either of these people knew that this was one of my greatest fears. I requested a cognitive test from my doctor and easily passed; two years later I had another test and showed no deterioration. My doctor predicted that this would not be a problem for me. Actually, the percentage of people with Parkinsons who develop some form of dementia is not much greater than that of the general population.

    With medications helping to control the tremor. common sense helped with other problems. For instance, I could lay the newspaper down on the table to read rather than trying to hold it. I learned to concentrate on the things that I am able to do not all the ones that I may have to give up.

    Over the years, Seelerman and I had discussed starting to square dance. The fall I was diagnosed Seelerman decided it was time to give it a try. So, we signed up for the square dance lessons and loved it, as I knew we would. I had no problem learning the calls or in keeping my balance, and I found out that seniors in dance clubs don’t swing as vigourously as teenagers at Camp dance.

    The writer’s group I belong to I read a short story about the Canadian North and was encouraged to expand it into a. novel Should I take on such a commitment? It would require a lot of research, and time. How much time did I have left? But I might as well try. With their encouragement, help in research, proofreading, editing, and solving computer problems, I completed the novel and had it published.

    I guess I don’t have dementia.

    I experienced various other problems.

    Vision: my eyelids droop so that when at rest I appeared to have my eyes closed. When I read the words jump around on the page as the muscles around the eye tremor. I read much more slowly than I used to.

    Sleepiness: some people with Parkinsons, including me, tend to fall asleep unexpectedly, even in public places – very embarassing. For this reason I restricted my driving to very short distances and my husband started driving me on out-of-town trips.

    Fatigue: separate from the sudden episodes of sleepiness, is an almost constant feeling of fatigue. Sometimes between unloading the bottom rack of the dishwasher and the top rack I have to take a rest. Not only do I get tired during activities, but also while sitting in a chair. Sometimes just lifting my arms seem too much effort. I push myself to stay involved and I must say it helps. If I’m going to be tired anyway I might as well be tired from doing something. Sometimes after an evening of dancing I feel better than when I started.

    Parkinsons is a progressive disease. I don’t notice the difference from day to day. It is more evident over the seasons of the years. My bowling scores, that originally went up after cataract surgery, soon began to slip. Over the years have gone down from mid-80s to 80, to 75, to struggling to make 70 with an occasional good string, or strike or spare to brighten my day.

    On our second drive across Canada from New Brunswick to BC, and I realized that I couldn’t do some of the things that I had done five years earlier. I tired more quickly on long hikes, and following a rugged path by a mountain stream was out of the question. But I did manage to climb into a small plane and control my fear of heights so that I could share with Seelerman the joy of flying over Lake of the Woods. We had a great trip and we still talk about the highlights which included meeting several people that I originally knew from the Wonder Café.

    Actually, the Wonder Café 2 has been a great boon for me. I participate regularly. I’ve met some wonderful people online (followed by meeting some in real life). We have supported one another through times of crisis, illness, the death of loved ones. We have asked for or given advice on anything from where to go on vacation, to holiday customs, to bread making. We have shared laughter and jokes and our Secret Santa gift exchange. We have engaged in ‘open-minded discussion and exploration of spiritual topics, moral issues and life's big questions.’ This year I have been sharing my thoughts as I ‘read the Bible all the way through’.

    Seelerman and I have watched our granddaughter graduate from high school, enter the adult world of work, studies, and the joys and frustrations of owning her first car and taking care of it.

    We’ve enjoyed having our grandson visit several days a week after school, until he was old enough to take the bus home and spend an hour or so alone until someone else in the family got home. I took him to swimming lessons; and to Vacation Bible School where I volunteered to help with the children. But two years ago at age 12 he no longer wanted to attend and I found that I no longer had the energy or patience to deal with the children. I still continue to take an interest in faith development and in outreach at the church.

    We have enjoyed taking Grandson with us on short trips: to the Gaspe Peninsula where we saw the Perce Rock and went whale watching; to Miscue Island (with our son along) where we swam in the ocean and experienced a bit of a different way of life; to Nova Scotia where we visited Peggy’s Cove, Lunenburg, and the rugged South Shore , Port Royal, and other attractions. A trip to NS again this year reminded me that I no longer can follow a rugged trail down from a cliff to the seashore, but contented myself with walking along the dikes first built by the Acadians.

    Over the years I’ve watched Seelerman gradually develop into a caregiver, He does much of the laundry, some cooking, and housework. And almost all of the driving.

    Seven plus good years – when I asked for five. So much to be grateful for. The Bible says three score years and ten – that’s seventy. I’m to be 78 in two weeks. I guess these last seven or eight years have been a bonus!

    I have a feeling that recent changes in my physical condition may indicate I am entering a new phrase of my Parkinsons. Lets see what the next five years have in store for me. And we won’t worry beyond that.
     
    Nancy, Jae, PilgrimsProgress and 4 others like this.
  3. Pinga

    Pinga Room for All

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    First, I always enjoy your writing. Thank-you for sharing the diagnosis information, and the trends and how it has impacted you. I am betting you could write a chapter on each of those paragraphs. ?? have you thought about that??

    Secondly, I am sorry that you are experiencing more challenges due to your parkinsons. I am thankful to hear that you sound like you may have a diagnosis with your neck pain. I am not surprised that your son noticed your neck. sometimes it is those who don't see us very often who see major changes.

    Seeler, I will always appreciate updates -- good days or bad - in room for all. You are important to me.
     
  4. Waterfall

    Waterfall Well-Known Member

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    You're an amazing woman Seeler and an inspiration to all. I enjoyed reading about your journey very much...
     
    Jae, Seeler, Ritafee and 1 other person like this.
  5. KayTheCurler

    KayTheCurler Well-Known Member

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    Seeler thank you so much for your honest info about your personal experiences of Parkinsons. Your observations could be expanded into a book that others would find both interesting and educational.
     
  6. Jae

    Jae Well-Known Member

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    Thank you for sharing with us @Seeler

    Council - I think this should be on the "Special Guest" forum or whatever it's called. It's a really good thread.
     
    Seeler and Mrs.Anteater like this.
  7. paradox3

    paradox3 Well-Known Member

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    Thanks @Seeler. It is good to know a little more of your story.
     
    Seeler likes this.
  8. BetteTheRed

    BetteTheRed Resident Heretic

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    You are such a strong woman, seeler. But I read deep appreciation, as well, for that strong quiet man who has your back. Thanks for sharing.
     
  9. Seeler

    Seeler Well-Known Member

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    Yes, Bette, Seelerman has my back - he does much more than I expected. I don't know how I would manage without him.
    He is healthy and strong, but is starting to feel his age, and I worry about him. Take care of the caregiver, I remind myself. And I try to be as independent as possible. He does all of the yard work and 'man' chores, and is taking on a lot that I used to be responsible for.
     
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  10. crazyheart

    crazyheart Rest In Peace: tomorrow,tomorrow

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    Seeler, you have been my rock as I worked through Morley' s Parkinsons. I have never said Thank You.

    Blessings to you and your family.
     
  11. Tabitha

    Tabitha journeying

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    Nice to read the story Seeler. I remember well your visit. Keep living the life!
     
  12. PilgrimsProgress

    PilgrimsProgress Well-Known Member

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    So glad that we got to be "ships in the night" and met in real life in Halifax, Seeler.....

    I suspect overseas travel is a thing of the past for me now -so wasn't I the lucky one to meet such wonderful Canucks - online and in real life?
     
  13. Seeler

    Seeler Well-Known Member

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    Kay, thanks for your suggestion that I could expand article to a booklet. Others have made similar suggestions. When I look it over, I believe right. Certainly details of the Canadian trips Seelerman and I have made could make a chapter or two. I could tell people I met along the way, their hospitality and kindness to us.
    Crazyheart and Morley welcomed us to their home where we are comfortable visit before then taking us out for lunch and giving us advice on what there was to see in the area and how long it would take to reach our next destination. Crazyheart was just as I had expected her to be. Morley was warm and friendly. If you already had been diagnosed with Parkinson's I was not enough familiar with all the symptoms to realiz with es along a walking trail(following a little railway) and through a tunnel - beautiful scenery, the mountains and the lake. And she accepted that Seelerman would be her helper when we went out in her big canoe.
    There was the fun we had with Pinga when she met with my sister and me and our husbands to watch the BlueJays win a ballgame in Toronto. None of us but Pinga had been to a pro game before, or to the Rogers Center, so Pinga had to make arrangements of where to meet outside and how to find our way around inside. Lots of walking and stairs, but Pinga waspatient and kind when my sister and I were slow.
    And Mrs.Anteater I'm sure kept my limitations in mind when planning and preparing for us living in her home while she visited family in Germany.
    Yes, I think There would be lots of material for expanding this and developing a continuing story. I'll run the idea past my writers group, and also evaluate my energy and how well I make out with this dragon.
     
    Sarah, KayTheCurler and paradox3 like this.
  14. Seeler

    Seeler Well-Known Member

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    I'm sorry to hear that Pilgrim. I'm glad I got to meet you on your one visit east. I was hoping that you would come back to see more of this part of Canada. Halifax andPeggys cove are nice (Seelerman and I got to see Peggy's Cove for the first time last year); but there is a lot more to NS, and to New Brunswick.
    I guess I'll have to content myself with our delightful visit, and with your amusing and/or thought provoking well-written posts.
     
    Mendalla, Jae, Mrs.Anteater and 2 others like this.
  15. Seeler

    Seeler Well-Known Member

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    If anyone thought this sentence didn't make sense, you are right. The Dragon decided to leave out a few lines When I transferred from the dictation box to the post.The second line should read 'Not familiar enough with all the symptoms to realize. Not everyone experiences Parkinson's the same – I started with tremors; others may experience stiffness, slowness, falling, or several other symptoms. And, of course, there may be other reasons for a tremor or stiffness or slowness etc.

    The next sentence, actually a new paragraph, is about our visit with Tabitha and how she took my condition and limitations into consideration when suggesting activities we could do together.

    I realize that I must be more careful with my proofreading.
     
    Last edited by a moderator: Dec 4, 2018
    BetteTheRed, Pinga and Mendalla like this.
  16. BetteTheRed

    BetteTheRed Resident Heretic

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    I sorta got the gist because I recognized the trail as a lovely one I'd been on with Tabitha.
     
  17. Seeler

    Seeler Well-Known Member

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    I'm thinking about Crazyheart this morning; why can't stay the same? Why can't we have Crazyheart back and.in good health like she was when we first started posting to WonderCafe?
    I pray and send positive vibes for her to regain her strength so that she is still able to enjoy life with her family and friends, including us on WonderCafe. When I think of what she has had to face in recent years, my problems seem minor.

    Old age isn't always fun. There comes a time when we have to realize that many of the things we dreamed of doing will not happen, and many of the things we enjoyed even in recent times are behind us.

    There is a couple I am friends with; each year during Advent I host an At Home, where I let people know that I will be 'at home' and would love to have them drop in for a visit between 2:00 pm and 8:00ish. Since this couple first moved to town a few years ago, they've usually come around 5:00 when there is a lull as the afternoon crowd thins, and I invite them to share a bowl of home-made soup with us (other visitors join us for tea and dessert. I hadn't seen them at church for awhile and looked forward to seeing them again for supper. Now I find out from their daughter that her father's usual quietness was masking the beginning of dementia and that this fall they had to give up their home and move into assisted living. Bummer. I always looked forward to having them. This year they will join us for a short visit but not for a meal.

    Similar things have happened with other friends and/or their spouses. A bowler develops knee problems and drops out of the league, A neighbour drops suddenly with a heart attack or stroke. The woman I've walked with since retirement who has coped with a chronic illness now has a walker and is talking about a wheelchair, It's sad.

    And of course the same thing is happening to me. I no longer can do many of the things that I enjoyed doing in the past. We miss the good times we had together. When we were younger and something happens we presume we are going to get better. Now, when we give up something, it's gone. We are not going to be better next month or next year

    So it's important to concentrate on things we can still do. I'm keeping busy. Yesterday Seelergirl and granddaughter came over after work to make cookies. Right now I am putting out my Christmas decorations and preparing for my gathering on Monday. ((I make adjustments. Someone coming in to help with the cleaning, and I am buying some of the sweets. Seelerman it's helping more. Next year, who knows?) Tomorrow I will take a break from preparations and go bowling.
     
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  18. PilgrimsProgress

    PilgrimsProgress Well-Known Member

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    And those three sentences so well describe old age.........
    For me, the decline I fear most is dementia. The reason being that whenever my life hits a rocky patch I can call up my resilient weapons of imagination and humour. They would be lost to me with advanced dementia.

    Crazyheart understood this, hence our shared roofer fantasy.........
     
    Seeler and Pinga like this.
  19. Luce NDs

    Luce NDs Well-Known Member

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    Shared fantasy .. we have to go there to escape real brutes ... thus the essence of the beyond or be OBI McGee, or even Robert Service setting fires of warming nature ... and cool demons are heated!
     
  20. GiancarloZ

    GiancarloZ Simul Justus et Peccator

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    @Seeler , you're brave to keep so active, challenging the limitations nature tries to impose.
    This is very inspiring. Thanks for sharing!
     
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