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Parkinson’s Disease (a patchwork of my journaling from different times and dates)

I’m not sure, it could be six years ago, I was living alone by myself with two dogs in Brooklyn, when I noticed that my arms were not swinging when I walked. How strange. As other “things” occurred I had no landscape on which to identify them as symptoms. My posture deteriorated, my pace slowed, my stride shortened and stiffened but after all I was in my mid sixties. No one else commented so it probably was an age thing. Often I felt as tho’ my insides were tremoring. But there was little visual to validate this and again age might be responsible. My voice lost volume and quality. Habitually very animated, more and more my face lacked expression. My family became concerned particularly when I, who loved to dance, attended my grandson’s Bar Mitzvah and could not dance. Not that I didn’t want to, simply my feet did not seem to get the right messages from my brain.

At the time I was in treatment for Fibromyalgia. Because it is a disease that involves chronic pain and fatigue I had assumed that the Fibromyalgia was responsible for the new symptoms but was encouraged to see a neurologist for an evaluation. The waiting room in the office of the MD I consulted was full, which seemed encouraging. The actual wait was less so. The tests he put me through struck me as highly unscientific: spread your arms wide, now touch your nose first with one hand, then the other, squeeze the doctor’s fingers, walk a straight line as quickly as you can, resist falling when given a little shove. I have since come to understand that these “unscientific” tests provide the doctor with information not attainable any other way.

Seated in his office he told me that I had Parkinsonianism. With a casual attitude he handed me a prescription, told me to make appointments for various tests and to make an appointment for a follow-up with him. I cannot recall leaving his office.

For weeks I rolled the words around in my head, PD,

Parkinson’s Disease, chronic, debilitating. None of it felt like me. I tried doing some searching on the web, could not absorb the information. Then Margo came to mind. She was a long time friend who was diagnosed with PD many years ago. Getting together with her had become more and more difficult. It meant that I had to go to her, which I had less and less energy to do. She lived almost as far from my home as possible and still be in NY.

Describing my experience is difficult. There’s chronic pain, a different pain from that produced by Fibromyalgia. I take a lot of narcotics in order to be able to deal with my everyday activities. My fatigue can be so overwhelming that I need to lie down in order not to fall down. The PD tremors and unsteadiness and muscle spasms arenot very observable by others but very disruptive to my functioning. I also need arrythmia medications, reflux medications and a slew of supplements.

I experienced severe side effects, from the medications, so I began the search for the correct drugs, dosages. dietary choices,

At that point I moved to Santa Fe and went through a similar experience with two neurologists, becoming more symptomatic and developing severe GI distress.

My son, Marc, suggested that I seek a consult at Cedars Sinai MC in LA where I found a neurologist to work with. At about the same time I found a wonderful, holistic MD in Santa Fe who specializes in pain management.

Living with several chronic diagnoses is demanding. Much of my time and energy are absorbed by experiencing symptoms, monitoring medications, visiting providers, while trying to keep a semblance of order in my life. Above all is the challenge of acceptance; this is my life, not what it was but what it is now. I morn my loss of dependability, of the ability to be helpful, since I might need to cancel at a moments notice.

Dealing with medications, side effects of medications, physical symptoms, and the like allowed me to avoid the emotional, feeling aspects of the changes in my life, but only for so long.

Loneliness being alone solitude

I hear concern in my daughter Robin’s voice. “Are you getting out?” she asks. “Not just to the market, but socially.” Most of my life I have been actively involved in groups: my family, my work, the Brooklyn Women’s Chorus, the Food Coop, vacationing with friends. Now I spend most of my day alone, except for Olivia. She is a wonderful companion, a warm, cuddly miniature Schnauzer. Her demands are simple, feed me, walk me, play with me and let me curl up in the middle of the bed, right up against your leg. Those requests force me to evaluate my status. For example Can I take a walk? Exercise is important for my many diagnoses. Each of my physicians makes a point of the need to remain active. Am I feeling well enough to go for a walk or do we just go out the back door so so Olivia can respond to nature’s demands.

Being alone suits me now. I have always enjoyed people, their energy, their stories, but recently being amidst a lot of people, with many conversations going at once feels like a physical assault. Sometimes I need to flee the restaurant.

There is a difference between loneliness and solitude. These days I need a lot of alone time, which includes much sleep and many MD visits. Loneliness creeps over me when I miss an intimate companion. That person who accepts me warts and all, who can comfort and understands me even when I have not spoken out-loud. I had such a relationship for 22 years. When I needed to come to grips with life with PD, that person, my partner died.

At the same time I had to have five surgeries, I lost my job and I was taking care of my mother who was living in a senior community and falling into Alzheimers dementia. There was no time for mourning.

There are several PD organizations on line, some with online seminars. Since it required no travel I tried to attend. I tried to get involved. Although I find writing on a keyboard better than longhand I am not comfortable with remote conferencing. When in the past I have joined a conference online, I find myself in the kitchen making a cup of tea, or transferring a load of wash from the washer to the dryer, nowhere near my computer. This site is the first that I feel engaged in and enjoy the personalities I meet. When I had no intrnet for several days I missed the contact.

PD impacts everyone differently, or so I have been told when I try to find some pattern or predictability in what I am experiencing. I am riding my own private ice floe on un-charted waters. Periodically someone, perhaps a doctor, floats next to me and provides some observation, advice or medication. Over the past year we (2 Mds, one PT and I) seem to have designed a course, which I find tolerable. Not asymptomatic or pain free, but functional.

On “good days” denial runs strong. Do I really have PD? Not a helpful state because I then do more than is reasonable and that results in system collapse J So, although there are many thoughts nudging each other in my brain, I need to stop, walk away from my desk and rest.

From the center of a “not good” day… I have been trying to figure out how to put the way I feel into words that make sense. “I feel lousy” does not give any clues. I have tried.

“It’s like a bad case of flu after working out too hard the day before.” Exhausted, achy, cold (in spite of layers of clothing and the heat on), fuzzy headed, anxious, feverish (normal temp), wobbly, with burning eyes, all at the same time. As it attacks so it leaves, and, hours later I feel enough better to climb out of my armchair and see how much of the day remains and what I can do.

Last month my symptoms escalated. After many weeks of “doing OK”, getting out, participating in life I crashed. Thanks to Dr. S we discovered that I had a urinary tract infection and had probably acquired the “Flu” that has been attacking indiscriminately. So, I learned, chronic diseases do not come with a free pass. In addition recovery takes longer. Cursing, screaming, waving the white flag, does not help. I need to lie down. Your turn!

32 Replies

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  • I am new to this blog and don't know if this has been proposed before, but here goes.

    I am holding you tight in an internet loving hug... everyone is invited to join. Group hugs are best when physically experienced, but we do with what we have.

  • I'm in with you. :)

  • Me too!

  • group hug!!!

  • Wow, thanks for sharing. I enjoyed reading what you have written. I'd like to write my experience, but have not yet been able to put it on paper.

  • Hugs to you ((gran5))! Thank you for sharing. I, like DiCan, cannot put my story into words yet. I'm a newbie and am still trying to get my head around my PD diagnosis. I identify with so many of the things you said and understand how you feel. Know that I'm here for you...anytime!

  • Gran5---wow I can relate to so much you said......the fatigue, the pain, overdoing it on good days, then paying for it. I was diagnosed 6 yrs ago next month and even though I retired from a nursing career spanning 46 yrs last year I am just 'getting it'-----taking my meds on time is crucial. I could go but will share in the group 'hug' and for the other commenters I think we are all in the right place----this site is a tremendous source of answers, support, a place to express whatever the emotion of your day may be, a sounding board--------we are NOT in this alone, who better can understand what we deal with each day but a fellow-parkie. Try to hang oin to a sense of humor and smile at least once a day. Gail

  • Damn, we are a strong community! Include me in that hug.

    Gran, you just go lie down when you have to...and getr UP when you have to.

  • Yes, we are a strong community.

  • Yep include me in the hug hoo please!! Tony xx

  • What an informative piece. Will write about my own experiences, which seem trivial next to yours at a later date. Keep strong. This site is brilliant and we are all in the same boat, albeit with different symptoms.

    GROUP HUG needed.

  • hi

    a GROUP HUG t4 you and everyone else

    love jill :-)

  • HELLO GRAN5 - I FELT YOUR PAIN AND FRUSTRATION SO MUCH - WONDERFUL PIECE AND KEEP ON PLEASE - TELL US MORE OF YOUR LIFE AND ALL THE THINGS THAT YOU DID - I HAD A WONDEFUL DREAM LAST MIGHT - I WAS ABLE TO WALK AGAIN - HOW FABTASTIC IT FELT -- LOVE FROM SHA X X

  • SHa I have this dream always when I can sleep :D don't want to wake up. Once I was being hugged by George Clooney. Might as well dream big!

  • Hi Gran5, A great blog. Non Parkies should read this to give them an understanding just what PD is all about. It's not just tremor and the odd side affect. It's a whole new way of living and getting by. One day at a time. I'm a vetern Parkie of 13 years. I particularly relate to the feeling good day when you do too much then suffer the consequencies the next day or maybe next few days. I send you a big hug from Bonnie Scotland where I am pleased to say I have a brilliant consultant who goes the extra mile to help me through each day. The system that has been set up at Stracathro Hospital in Angus has been copied throught the National Health Service in Uk. They are there for me 24/7 but sometimes even that is not enough. Have as good a day as you can, Happy thoughts, Drew

  • WOw a NEw Yorker who got away. I think about it. I also think about moving from West Side to Brooklyn. I am still involved and getting out, but it requires great effort and planning and I sometimes don't feel up to it . I watch way too much TV and think if I moved to somewhere more outdoorsy I would at least have nature as company. Damn. Thanks for posting, Grans, I'll be following your story with interest. PatV

  • It takes long arms to reach you from California but we are tryin....

  • So much of what you wrote mirrors my husband. We were floored when the neuro gave him a diagnosis of Parkinson in a flat, uncaring manner. He was so cold. When we asked what he should do, we were told to take the meds and stay active.

  • I really think drs. should be educated in how to tell patients they have PD (tell their patients to read this blog and that no two people with PD are alike.). I was also told in a flat, uncaring manner. I was given my prescription and told to read the MJFox website.

    MJFox is a good website but was not helpful, at the time. I needed something like this blog, an understanding that no one could give me a "road map" of how my life was to become.

  • exactly. When I asked the neuro (whom we no longer see) for literature, he pointed me to a flyer from a pharmaceutical company. I am so gratful I found our local support group in the phone book. They have been our rock and a contant source of info. They even helped when he was hospitalized last June with a gangrenous gall bladder and reacting badly to the anesthesia.Between them and our movement disorder neuro, we got through it.

  • Thank you of your posting. I could relate to much of it.. I have no tremors except for my teeth, and they really set up a commotion. But as to the tiredness and bad and good days. Oh yes! My biggest problem is balance. Just standing still, I have to watch it that I don't go over. I don't understand how so many of you still work, go out, and are active. I don't seem to have that strength . Anyway I enjoyed your letter and can relate to it.

    Do you feel you can go on living alone?

  • Hugs to all...

  • I can't believe it was in the middle of a very long comment and suddenly lost it . O well maybe its just as well I was rabbiting on . I can talk for ages about Parkinsons and I am not the Parkinsonian .

    I am stretching out my arms to all you brave people whether the sufferer or carer we are all paddling the same canoe in different ways

    Well meaning people tell you to keep moving . I wonder how they would if they had to wear your shoes .

    Can you feel the love I do hope so ..

    All together now ... Alwyas look on the bright side of life da da da da da da da da .lol

  • Gran a big hug from me too. Your story is so familiar.You have been such an asset to this community and we are all here for you.

  • thanks all for your wonderful, supportive responses. Here's a chuckle, I had just posted when my internet wentDOWN, for 4 DAYS! But here I am and delighted to read your words and glad to join a group hug. Be careful in encouraging me :-). I've got a bit on Fatigue which I will post. It feels so good to be heard and understood. Bet you all know that reaction, "I know how you feel from someone who really doesn't but does not want to listen, so i (you) respond to questions with "OK" or some other bland response. So, while I take a nap here's Fatigue if you want to read.

    I want to talk about fatigue.

    Knowing that others also may be tormented, does not make my experience any easier to deal with. Now I am on a new search. I am not under any delusion that my situation is singular, that I am the only person suffering this pain and fatigue. (back of hand to forehead with mournful expression). With that understanding I have been searching, for people whose experience is sufficiently akin to mine so we can support, discuss or just really understand what we are experiencing day to day. It is a challenge to put my experience into words that are straight forward enough to allow for language and cultural differences.

    11/27

    Right now I am using my iPad to get these thoughts down. I am tickled by all my techno aids. For some of these notes I am using

    the iPad keyboard and for some I have Dragon, a voice recognition program so I can write while lying on my back. (Talking for a manuscript is different from conversation I have discovered.)

    Fatigue, back to the topic. So many fragments of thoughts try to organize into complete ideas. For example, I started from the idea of fatigue as a Parkinson's symptom. It is that, but it also exists as elements of many other illnesses, of course.

    When Fatigue strikes it requires that I pay attention,

    immediately. A cartoon image comes to mind, I'm not sure where I saw it: the character is running along, suddenly there is a wall, s/he runs right into it, slides down to lie in a puddle at the bottom. That perfectly represents my experience. In the real world I recall many times when I made it home from walking my dogs to spend the next hour on the floor inside the front door hoping no one would want to come in.

    The feeling itself, Fatigue, is only one aspect of fatigue: the syndrome. All of us know tiredness, that "I just want to go back to sleep" feeling. The fatigue I experience is so much more. This morning I knew I was going to have a "fatigue day". I had plans. They were pretty mundane, but I needed to get them done. Errands: needed to get to the post office, pick up a few items at Albertsons or Target. Instead I spent most of my time resting, dozing and trying to escape into some TV program I recorded earlier for just this scenario. My body hurts my mind is clouded, I can not deal with the pile on my desk, it might as well be Sanskrit. I can not remember what I had planned to take care of and if I can remember I'm not sure I trust the results.

    For the person I once was, someone who juggled work and school and three children reasonably well, one of the hardest things this morning is to accept amicably my inability to do nothing, as the fatigue demands.

    Fatigue also has made me unreliable. I cannot recall canceling an appointment with a doctor in the past. I have missed or rescheduled 6 visits in the past 2 years.

    When I retired and moved west I had intentions. I have always given a substantial percent of my working hours as a "volunteer". For me that meant getting involved in anything requiring my credentials and my training. There were many options, I looked forward with anticipation. I had not factored in Fatigue. There is no way for that puddle at the base of the wall to do anything but find a reasonably comfortable position and wait it out.

    As I examine my life, I come face to face with my ego, ...again and again. I don't like having so little control. When my life was moving forward and I was very busy, working and going to school and raising three children it made perfect sense to experience fatigue at the end of a busy week. And, it felt as tho' I was in control, I was running my life. An illusion. It brings to mind the game "Jenga” in which we take turns building towers by finding logs in the structure which can be removed without causing a major collapse. The tower did rise and the gaps grew larger. Now it seems any log I try teeters at the edge of the collapse.

  • Gran, I hope you saved your blogs so far. You should write a book. Let some clever dude at the publishers sort out the grammar etc. It's not important but what you are saying is most important.

    By the way, Dragon does not understand me - she is not tuned into Scottish dialect. LOL.

    I, some years ago, was almost hyper. I enjoyed "doing" things like diy, playing golf, whatever. Always busy.

    Well, yesterday while filling the dishwasher my legs got the trembles big time. I sank to my knees before I fell then got my back against the wall and my backside on the floor. Couple of minutes later it passed and I was able to slowly get up. I checked, it is PD. Fatigue - could be my middle name. I feel bloody useless most of the time. Take the bin (garbage) out - sure, except when I get in after the 20 yards stroll I am on my back in the chair, exhausted. I have had a full med check up and while I had a TIA (minor stroke) 3 years ago I am "fit for my age" - whatever that means (66 y.o. March 11 2012) - please, no cards but thanks for the thought!).

    Allowing for age etc. I should be able to do most things reasonably well but I cannot. The consultant concurs - PD.

    This is not a rallying call for "chin up - best foot forward", "make the best of it", "somebody always worse of than you". Works ok while you are in denial but up front in the clear light of day, days can be crappy so let's not kid ourselves.

    It would not be so bad if I lived in L.A. but I am in the north east of Scotland so the weather situation at both destinations are somewhat different.

    I have just re-read this episcle and it's a bit gloomy. Well, there you go. That's life. If I win the lottery tomorrow who knows, i might feel great - just don't bank on it - the lottery or my mood!!!

  • I was drowsily tucked into my bed, delicious, when some *&(*_(*_ threw something heavy into the dumpster next door.!! So thanks Drew for your response, Maybe we could put that book together, together, I think about it in my dreams LOL

  • Thanks for speaking so frankly about your symptoms and feelings. I cringe every time someone says to me " You don't look like you have PD" People cannot understand the broad spectrum of symptoms. I Have been in denial about the "Progressive" part of the disease. I thought I could handle it at the level that it was. It has a nasty habit of moving ahead slowly without you even noticing it until it's cumulative effect is seen and felt. I now have the chronic pain you mention in your blog. Prednisone works well but my DRs won't allow me refills. Also, the part about exercising is also true. Every Dr. says to exercise. I do. By myself walking on the beach. With a personal trainer . And at the gym 2 -3 x per week. Then, I overdo it because I'm feeling good and I cause a system collapse. So, how do I learn to balance? Thank you so much for all your help. I'll keep reading and looking for support from my PD buddies.

  • About Draagon, keep talking, she learns!! Went to my ceramics class today, love it but I will need to rest until Thursday AM. Then I am enrolled in a Adaptive Ski program, amazing. That means rest til sat am, but worth it. If any one is interested I will give details. Now this chatty person needs to get horizontal :-) What a great group of PWD's.

  • REST WELL GRAN AND ALL FELLOW PARKIES

  • Thanks for your good wishes. I did rest and had a great time skiing (adaptive) I'll try to post a photo.

  • I think every one of you on this forum are inspirational !

    We got Parkers which we don't want but we get on with it and even share our thoughts fears and experiences.

    What outstanding trust !

    We have opened our hearts and exposed our soul's to a stranger who is oddly so familiar and yet we have never met !

    we feel their emotions but have not worn the same shoes but know that we have shoes from the same shop in our wardrobes or on our feet !

    Remarkable people with Parker's for I believe I took this condition on because the person who it was originally destined for I knew would not be able to cope with it, So I offered to take it instead !

    So every one you are all hero's in my heart, soul and mind !

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