TheBanyanTree: Change

[Monique Colve]

No problem. I mean, I am a bit over sensitive on these things because it happens a lot. Not that I need everyone to understand, I just want people to be more understanding of those with issues. Not you - I see the denial process in a lot of stories Parkinson's patients tell. Their families don't believe them, they deny it, they're abandoned, and they're in despair. I am not. Because something gets all of us eventually, and my life is far more to me than this disease. Also, I have a happy home life. And it's not as if I expected to live forever. I didn't plan to make it this far! 

Sorry for my rants! 

Monique
Sent from my iPad

> On Feb 6, 2022, at 9:45 AM, Gloria via TheBanyanTree <thebanyantree at lists.remsset.com> wrote:
> 
> Sorry, Monique. The last thing I wanted to do was to appear to be
> minimizing the hell you're going through. I get it. I do!
> 
> I also get the overtiring and the effects from it. I've lived with that for
> 3 yrs plus now with the disease I have, the effects of the meds I had to
> take, and balancing what's healthy activity and what's too much. I needed
> to know that my adrenal glands were going to work again, because sometimes
> they don't after years of prednisone. It was a hellish rollercoaster ride.
> I think I'm one of the lucky ones. Mine woke up.
> 
> I know your situation and it's not pretty and it's not going to get better,
> as you've said. I believe you. I'm not minimizing. I feel for you. I wish I
> could make it better. I love you and I care a lot about you.
> 
> And absolutely, the more you can accept what is, the happier you'll be. I
> think that's the same for all of us. When I wrote, never give up, it was
> with the intention of saying keep doing what you're doing. Don't go lay
> down somewhere and hope you don't wake up. Because sadly, that is what some
> people do. I see it everyday with people in my vascular group. They give
> up.
> 
> Hugs for your day.... xx
> 
>> On Sun, Feb 6, 2022 at 12:27 PM Monique Colve via TheBanyanTree <
>> thebanyantree at lists.remsset.com> wrote:
>> 
>> No. I have loss of brain mass. Anesthesia can make it worse, of course,
>> but not for this length of time, and it's been getting worse for a long
>> time now. I have long term memories, and I know the difference. This has
>> been tested and retested and it's an actual fact. You're minimizing what I
>> know to be true, which is, as I said, what people tend to do. It's one of
>> the reasons I can't work. It's vascular Parkinsonism.
>> 
>> I'm not your mom or your coworker. I'm me. When I go to PT I have to
>> remind them not to overtire me, because once I came home and my vision
>> blurred out. That's another event just waiting to happen, or not, no one
>> can tell without more tests. Anyway, I go to PT to have fun. We laugh, we
>> joke, we work hard, but not so hard I blow my brain mass up more.
>> 
>> I find the more I accept what is, the happier I am. I have my own person
>> right here to tell me what has gotten worse and what hasn't - he sees me
>> every day. The memory loss is such a slow process.
>> 
>> The key is to know when to quit - I kept working because "keep trying" but
>> I also damaged myself by having another stroke. Knowing when to quit is the
>> important part.
>> 
>> Monique
>> Sent from my iPad
>> 
>>> On Feb 5, 2022, at 8:36 PM, Gloria via TheBanyanTree <
>> thebanyantree at lists.remsset.com> wrote:
>>> 
>>> Perhaps being put under for surgery hasn't worn off yet, or perhaps it's
>>> just the way it is this week or both and then some. The fact that you
>> know
>>> you're unable to remember things is a positive. Never give up trying.
>>> 
>>> My mom had stroke-induced short-term memory loss so I've witnessed that
>> up
>>> close and personal. If I had a reliable memory I'd remember how long it
>>> takes to move something from the short-term area of the brain to the
>>> long-term. My memory has never been great and all I can remember about it
>>> is that there is a timeframe for it. Bah!
>>> 
>>> I also remember a coworker that was only 12 yrs my elder telling me that
>>> he'd forgotten more than he knew. Shoot, he was probably about 40 when he
>>> said that. I remember not understanding how that was even possible. I
>> sure
>>> do get it now! On the other hand, those with phenomenal memories seem to
>>> suffer greatly with the knowing of all they have lost. People in their
>>> lives, youth, missed opportunities, belongings. For some reason,  feeling
>>> the pain from loss is more powerful than remembering the joy felt during
>>> pleasant times.
>>> 
>>> Speaking of mom reminded me of her standard answer to "How are you?"
>> after
>>> her stroke. "Well, I'm still here and I'm thankful for what's good, and I
>>> hope the bad gets better."  I know it helps me to remember that on my
>> down
>>> days.
>>> 
>>>> On Sat, Feb 5, 2022 at 10:46 PM Monique Colve via TheBanyanTree <
>>>> thebanyantree at lists.remsset.com> wrote:
>>>> 
>>>> I've been recovering from I don't know what, but all week I've been
>> unable
>>>> remember Canute's name! For days! It's hilarious - poor dog. I'll call
>> him
>>>> Ash, or Dog, or hey you, then I'll remember and blurt out "Canute!" I
>> try
>>>> to keep my brain active, but my short term memory is s***. People will
>> say,
>>>> "oh, I do that too!" But no. That was just an example. It's constant
>> with
>>>> the newer things I have to remember. Having a conversation with me
>> requires
>>>> a lot of patience and guessing! I forget I had a recent knee surgery and
>>>> I've been walking around like it's all better!
>>>> 
>>>> Monique
>>>> Sent from my iPad
>>>> 
>>>>> On Feb 5, 2022, at 7:00 PM, LaLinda via TheBanyanTree <
>>>> thebanyantree at lists.remsset.com> wrote:
>>>>> 
>>>>> Of course, it's a challenge, sometimes, especially when overwhelmed
>> with
>>>>> fatigue and/or pain or whatever, but I feel as Monique does...that it's
>>>>> important to look at all that I have and be glad. It helps, a lot. I'm
>>>>> sut]re you experience all of this, too, Glo.
>>>>> 
>>>>>> On Sat, Feb 5, 2022 at 12:41 PM Gloria via TheBanyanTree <
>>>>>> thebanyantree at lists.remsset.com> wrote:
>>>>>> 
>>>>>> "She still is." I'm going to remember that and keep my ears open. I
>>>> don't
>>>>>> think I've ever witnessed something like that. Wow.
>>>>>> 
>>>>>> We are not our illnesses. We are much much more than that, as
>> evidenced
>>>> by
>>>>>> you regularly, LL and Monique, and all other tree dwellers. I see no
>>>> reason
>>>>>> to stop being who we are. Party on!
>>>>>> 
>>>>>> On Sat, Feb 5, 2022 at 7:37 AM LaLinda via TheBanyanTree <
>>>>>> thebanyantree at lists.remsset.com> wrote:
>>>>>> 
>>>>>>> Laura is so right, and today has enough stuff of its,own, including
>>>>>>> adorable puppy stuff.
>>>>>>> 
>>>>>>> I like what you said, Laura about us not being our illnesses. When
>>>>>> Grandma
>>>>>>> D was in the nursing home and I was visiting with the kids, one day,
>> a
>>>>>>> nurse/attendant/WHOMEVER said too me,
>>>>>>> 
>>>>>>> "She gets a lot of company."  Y au-\nat an uncle were there, about
>>>> every
>>>>>>> day to feed her and watch over her. I answered,
>>>>>>> 
>>>>>>> "Yes, she does." She responded, "SHE MUST HAVE BEEN A WONDERFUL
>>>> WOMAN." I
>>>>>>> felt as though she'd slapped me. i didn't get testy, I just said,
>>>>>>> 
>>>>>>> "She still is."
>>>>>>> 
>>>>>>> My thing is, we are here until we are not, and we all witnessed times
>>>>>> when
>>>>>>> Gram hadn''t spoken for months, but would come out with something as
>>>>>> clear
>>>>>>> as a I have theories  about that. When I took the kids, we went to
>> see
>>>>>> HER,
>>>>>>> and kind of, for a lack of a better word, minister, or "give" to her.
>>>>>>> They'd read her their little kiddie books and sing new songs they'd
>>>>>>> learned, and though she hadn't said anything in three months, when
>>>>>> Stephen
>>>>>>> hid behind the door, she said,
>>>>>>> 
>>>>>>> "What's the matter, baby?" She spoke too Christine,
>>>>>>> 
>>>>>>> "How are you, beautiful?" And, to me, she said
>>>>>>> 
>>>>>>> "You have a nice face."
>>>>>>> 
>>>>>>> My aunts and uncles were flabbergasted. They were there, constantly,
>>>> and
>>>>>>> there was constant chatter. I do think she was partial to one, since
>> I
>>>>>> was
>>>>>>> her first grandchild and she didn't see me from the time I was a wee
>>>>>> little
>>>>>>> one until I was, ha! an "adult," and met her and my father, and
>> that's
>>>>>>> another story.
>>>>>>> 
>>>>>>> Another time, a lot of us were there, as usual, everyone was
>> chattering
>>>>>>> over her. Some weirdo things were said, my crazy aunt was there and
>>>> made
>>>>>> a
>>>>>>> remark about Gram being "trapped" in her body. It broke my heart.
>> She's
>>>>>>> right here and she can hear you, you dumb ass! Gram always said that
>>>> I'd
>>>>>>> she found out she had Alzheimer's, she would go out the back door and
>>>>>> throw
>>>>>>> herself into the river. My aunts and uncles lost control of that when
>>>> the
>>>>>>> doctor ça,e right out and told her.
>>>>>>> 
>>>>>>> "What is WRONG with me?" Gram asked her.
>>>>>>> 
>>>>>>> "Dorothy," the doctor began," have you ever heard of Alzheimer's
>>>>>> disease?"
>>>>>>> 
>>>>>>> "Yes."
>>>>>>> 
>>>>>>> "Well, that is what you have."
>>>>>>> 
>>>>>>> The aunts and uncles were angry, but, hey. Whatever. She was still a
>>>>>> person
>>>>>>> and deserved to know...she ASKED.
>>>>>>> 
>>>>>>> Back to looney-tunes aunt loudly proclaiming that Gram was trapped, I
>>>> had
>>>>>>> to get up to,gop,too the car, because I was melting down, a little,
>>>>>> knowing
>>>>>>> how she felt about it, and as I got closer to the car, (we were on
>> the
>>>>>>> patio) my sister, Carol called,
>>>>>>> 
>>>>>>> "Linda! Gramma is looking for you!" So I called back,
>>>>>>> 
>>>>>>> "Bye, Gramma!" And she k picked everyone's socks off by calling back.
>>>>>>> 
>>>>>>> "Good-bye!"
>>>>>>> 
>>>>>>> We are here until we are not.
>>>>>>> 
>>>>>>> And, you can always call me, You are delightful.
>>>>>>> 
>>>>>>> ❤️❤️❤️❤️❤️
>>>>>>> 
>>>>>>> LaLinda
>>>>>>> 
>>>>>>> 
>>>>>>> 
>>>>>>> 
>>>>>>> On Fri, Feb 4, 2022 at 1:50 PM Laura via TheBanyanTree <
>>>>>>> thebanyantree at lists.remsset.com> wrote:
>>>>>>> 
>>>>>>>> Monique,
>>>>>>>> I think it's good you're going to see someone who is not directly
>>>>>>>> involved with your life, and not (hopefully) judgmental, to talk
>>>> things
>>>>>>>> out. And it's good you can type stuff out and post it here or to
>> other
>>>>>>>> lists. You can lay out everything you need get out, and just leave
>> it
>>>>>>>> there, no need to haul it back home with you. Sure, you can't get
>> ALL
>>>>>> of
>>>>>>>> it out, but every little bit you can leave behind relieves the
>>>>>> pressure.
>>>>>>>> 
>>>>>>>> Writing things out is, for me, a bit like lancing a boil. I get to
>> the
>>>>>>>> point where things are festering inside, and if I don't let them
>> out,
>>>>>>>> they will explode all over my brain and make me even more nuts. Here
>>>> in
>>>>>>>> the Banyan Tree is where my boils get lanced. (ew. sorry about
>> that. a
>>>>>>>> little dish soap should get that out.) Yeah, that's what happened a
>>>>>>>> couple days ago.
>>>>>>>> 
>>>>>>>> I'm proud that you are writing it all out and sharing it. It's like
>>>>>>>> Youngblood's posts, chronicling her experiences. How can anyone else
>>>>>>>> experience what's happening to you if we don't hear it from you?
>> Sure,
>>>>>>>> we're not really experiencing them physically, but even if we can't
>>>>>>>> empathize, we can sympathize with your physical and mental state,
>> and
>>>>>>>> maybe our perception of Parkinson's will change. It helps all of us
>> to
>>>>>>>> remember that you are not your condition, you are a PERSON with a
>>>>>>>> condition. I hate it at the doctor's when a nurse says, "You've got
>> a
>>>>>>>> Parkinson's in room four, and a brain boil in room two." No, you
>>>>>> fucking
>>>>>>>> don't. You have two PEOPLE in those rooms who have those conditions.
>>>>>>>> Grrrr.
>>>>>>>> 
>>>>>>>> Future blind. I like that. Live today for today. Deal with today
>>>>>> things,
>>>>>>>> and don't worry about tomorrow things. That's how dogs live, one
>>>> moment
>>>>>>>> to the next, and on the whole they seem to be pretty happy. Be happy
>>>>>>>> when you're happy, and be sad when you're sad. Don't worry about
>>>>>>>> tomorrow, just deal with it when it gets here. And if you think
>> about
>>>>>>>> it, tomorrow never actually gets here. We go to sleep and when we
>> wake
>>>>>>>> up, it's today again! Tomorrow is still a whole day away.
>>>>>>>> 
>>>>>>>> Anyway, I love you, too. Anytime you want to bitch at someone who
>>>> won't
>>>>>>>> judge, you know my email address.
>>>>>>>> 
>>>>>>>> Laura
>>>>>>>> wolfljsh at gmail.com
>>>>>>>> 
>>>>>>>> On 2/3/2022 5:23:13 PM, "Monique Colve via TheBanyanTree"
>>>>>>>> <thebanyantree at lists.remsset.com> wrote:
>>>>>>>> 
>>>>>>>>> Yesterday I stopped putting off the inevitable and called the EAP
>> at
>>>>>> my
>>>>>>>> husband's employer. Two doctors, my neurologist and my GP, had asked
>>>> me
>>>>>>> to
>>>>>>>> start seeing a psychiatrist and/or a counselor, not because I'm a
>>>>>> raving
>>>>>>>> psychotic, but because they believe I will need help getting through
>>>> my
>>>>>>>> upcoming life phases, and neither of them wants me coming to them.
>> Not
>>>>>>> that
>>>>>>>> I can blame them, their job is to keep my physical body in some sort
>>>> of
>>>>>>>> working order, not to listen to me whine.
>>>>>>>>> 
>>>>>>>>> Calling EAP is no big deal, but Parkinson's has given me the
>>>>>>>> predisposition to cry easily, and so I avoid it. There are triggers,
>>>>>> and
>>>>>>>> the last month has been difficult in more than one way. When Sam at
>>>> EAP
>>>>>>>> said I didn't have to tell him, but it would help if I did, I told
>> him
>>>>>> I
>>>>>>>> have Parkinson's, and brain damage, and memory issues, and dementia
>> is
>>>>>>>> considered likely with time. I had to stop work and my life is
>>>>>> changing.
>>>>>>>>> 
>>>>>>>>> No big deal.
>>>>>>>>> 
>>>>>>>>> Sam asked what kind of support I had, did I have anyone to talk to
>>>>>> about
>>>>>>>> this? I told him no, only my husband, and Andrew and I have agreed
>>>> that
>>>>>>>> talking to him about more than the basic medical facts is not
>>>> conducive
>>>>>>> to
>>>>>>>> a healthy relationship. I'm enough of a challenge as is.
>>>>>>>>> 
>>>>>>>>> I have no one to talk to. I really never have.
>>>>>>>>> 
>>>>>>>>> Parkinson's messes with the brain, even if one escapes the dementia
>>>>>> that
>>>>>>>> often accompanies it. If we're lucky, it's a long slow decline that
>>>> can
>>>>>>>> wipe away who we are, or were, and it comes with grieving. I'm
>> already
>>>>>> on
>>>>>>>> the way to being no one.
>>>>>>>>> 
>>>>>>>>> Once I had a reputation in my field, small as it is. People knew
>> me.
>>>>>>>> Sometimes I was known for being a smartass, sometimes for knowing
>> many
>>>>>>>> things. On good days I can still be a smartass, but there are few
>>>>>> people
>>>>>>> to
>>>>>>>> talk to. Physical therapists have been, other than my husband, my
>> most
>>>>>>> fun
>>>>>>>> conversations for the past month.
>>>>>>>>> 
>>>>>>>>> People with Parkinson's support groups have not been helpful - I
>> will
>>>>>>>> offer advice or support, but there's no back and forth, and the most
>>>>>>>> frequent advice includes prayer, which is not my belief system. It's
>>>>>> also
>>>>>>>> very conservative, which I am not.
>>>>>>>>> 
>>>>>>>>> I've been future blind most of my life, which means I can only see
>>>>>>> today.
>>>>>>>> I can't see a future that is any different. There are reasons that
>> are
>>>>>>> dark
>>>>>>>> and deep, probably best explored with a mental health counselor.
>>>>>>>>> 
>>>>>>>>> I love my life, despite my inability to connect with people, even
>>>>>>> family,
>>>>>>>> though my brother and I have made huge strides that no one else
>> would
>>>>>>>> notice. My life has changed a lot in the past few years, some of
>> that
>>>>>>>> pandemic related, mostly me related. I don't want any more change -
>> I
>>>>>>> used
>>>>>>>> to welcome change, now I fear it.
>>>>>>>>> 
>>>>>>>>> 
>>>>>>>>> Monique
>>>>>>>>> Sent from my iPad
>>>>>>>>> 
>>>>>>>>> Need to change your name, email address, or password? Or have you
>>>>>>>> forgotten your password? Go here:
>>>>>>>> http://lists.remsset.com/listinfo.cgi/thebanyantree-remsset.com
>>>>>>>> 
>>>>>>>> 
>>>>>>>> Need to change your name, email address, or password? Or have you
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>>>>>>>> 
>>>>>>> 
>>>>>>> 
>>>>>>> --
>>>>>>> 
>>>>>>>                                            ^v^
>>>>>>>    ,/'^-,/'^v-^v              ^v^
>>>>>>> v^\/  ^-,-^   ^,-v^
>>>>>>> ^v    '-^    ^-,   ^v
>>>>>>> v^v^  v^  v^  v   ^v^
>>>>>>> {  {   \ \//    }   }
>>>>>>> }  }    |``|    {   {
>>>>>>> {  {  / /  \ \  }   } ________________(   )_______
>>>>>>>                                                 ---
>>>>>>>                                                ----
>>>>>>> 
>>>>>>> Need to change your name, email address, or password? Or have you
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>>>>>> 
>>>>>> Need to change your name, email address, or password? Or have you
>>>>>> forgotten your password? Go here:
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>>>>> 
>>>>> 
>>>>> 
>>>>> --
>>>>> 
>>>>>                                            ^v^
>>>>>    ,/'^-,/'^v-^v              ^v^
>>>>> v^\/  ^-,-^   ^,-v^
>>>>> ^v    '-^    ^-,   ^v
>>>>> v^v^  v^  v^  v   ^v^
>>>>> {  {   \ \//    }   }
>>>>> }  }    |``|    {   {
>>>>> {  {  / /  \ \  }   } ________________(   )_______
>>>>>                                                 ---
>>>>>                                                ----
>>>>> 
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>>>> 
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>>> 
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>> 
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> 
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