parkinson's disease: c/d?

i (an adderall user) have a couple things in mind that may be useful to your mom and may want to have the dr confirm:

- the risk of giving it a try could be lower in that you don't need it to build up in your system so it takes a very short time, like less than a week or even immediately, to tell if it is helping or causing unwanted side effects. if after several days it still makes you jittery or unable to eat you stop taking it and it wears off quickly. for that reason it is also easy to play with the time of day or number of times per day you use it, you can take it when you need it (as long as it's not too late in the day--it will then interfere with sleep which is i *think* a contributor for some people who experience paranoia/psychosis). unless you are taking the extended release version, which i didn't like so much.
- in my previous reading about the appetite thing some people reported food tasting bad or feeling nauseated at the thought of food. i don't have that but it does sometimes cause me to get caught up in work and delay eating. there is no way to predict how one will respond but it can be worked around with planned eating/dosage, and appetite returns when it wears off. it's another reason not to use XR unless you know it doesn't affect your appetite.

After A LOT of persuasion from me and lists of alternate neuros my mom has finally found someone and called the office. The only hurdle now is getting the bad neuro to share my dad’s records w the new office which apparently is fraught for my mother.
But in reality we are one step away from an appointment w a competent medical professional who can hopefully give us a clear assessment of the situation. I’m genuinely excited about that.

this is good news, LL: fingers x-ed you get the medical advice you need

Yes, excellent news.

yay for encouraging news! <3

Yesterday the nursing home staff had the meeting with my mom about hospice for my dad. I guess it's time. Not that I thought it wouldn't be here eventually, it's just not going to be easy to process regardless of when it comes. The last year has been excruciating. All of my energy trying to find a new doctor was ill-spent. There is nothing anyone, even the best neurologist NEOH has to offer, can do. I feel sort of foolish pushing so hard to change docs but there is nothing that can be done about that. It's acceptance time.

Sorry to hear that, LL. Best to you and your mom in dealing with this.

I’m so sorry LL. You and your mom and dad are in my thoughts. Fuck Parkinson’s.

Really sorry to hear this - we all know it's an inevitable part of life, but it's no fun to deal with when it arrives

I went through this with my Dad (from MS) over twenty years ago, and my heart still sinks when I recall it

oh LL <3 sending hugs

went through similar with my father inlaw’s dementia & even though it is a cliche, acceptance really is one of the hardest parts

love to you & your family

❤️ thanks thread, i needed to feel less alone about this and I’m glad I shared.

Sorry LL. I hope and believe your hospice experience will be better than what our crap system has thus far offered.

(And if you need help choosing a hospice provider, I can help. Don’t let the NH try to pick for you—you have the right to choose!)

xp

Sorry LL. I hope and believe your hospice experience will be better than what our crap system has thus far offered.

― mom tossed in kimchee (quincie)

LL I am so sorry, sending love to you and your family.

So sorry LL. Went through a long process/decline with my former father-in-law, the end was slow and difficult. Hard on everyone.

Just a momentary impulse to search for this thread and bump it to curse this cursed disease.

GFY Parkinson’s

like many degenerative diseases that take a long time to kill people, this is one of those where eventually people stop asking how your relative is and you (I) have to find ways to bring it up (without being a total vibesuck) because otherwise no one remembers that you (I) have to cope with this

i don't remember the last time anyone asked me how my dad is doing and honestly, it's no one's job to ask me -- it's just suuuuper awkward to find a way to bring it up out of nowhere. so i don't and then i bump this thread. i guess it's better than nothing?!

i'm sorry LL, it must be hard to want to talk about it and for you to be the one who has to bring it up.

how is he doing?

There’s not much of him left beyond the vessel. I feel like I said goodbye the last time I was there & the memories of him are still there but that’s pretty much it. The person I knew is gone and has been since Oct 2021 and there’s still a body there. He is still receiving hospice care and acc to my mom (not the most reliable narrator) no one knows how long this will last.

Thank you for asking

My uncle has been dealing with parkinson's for the last four or five years. He's my mom's only brother and it's pretty tough to see (from afar) this tough Chicago guy going through this. The last time I saw him was December 2019, haven't seen him after that (due to circumstances), and he's hanging in there from what I can tell but he seems fully reliant on my aunt for everything he needs. But it seems like she herself is going through something right now, which has only been alluded to on social media, and she hasn't told my mom what (their relationship is "complicated")

Feel for you, dealing w this.

I'm so sorry, LL. Thoughts are with you.

sending <3 <3

love and solidarity LL ❤️

as the child of a long-term PD sufferer i always hope i will have helpful advice on this thread, but my dad's was a bit of an outlier case -- he was diagnosed aged 36 but it was extremely slow-onset and he lived to be 79, with the result that many of the things my family learned about handling it aren't especially useful to others. so i look at my too-chirpy response at post two of this thread and squirm a bit…

(for example i think we definitely benefited by just handling issues as they arose and never giving much thought about the future -- but this just makes less sense when the person with PD is older and matters are more urgent)

I'm really sorry LL, sending you my thoughts.

So sorry, LL. I am glad that he still has hospice, can def make a crucial or signicant degree of difference, in my experience for example.(I did think of it from time to time, but didn't know if I should ask; sometimes the relative's ongoing situation is too distressing a subject for some people I've known/had contact with: to be asked about it, esp. but not only in a public forum, so usually I wait for them to bring it up.)

sorry to hear this LL, it's a shit thing to have to live through. I've lived with my partner's physical regression with MS for over a decade. It started with taking away her mobility, then on to the cognitive decline then to burgeoning dementia. It can take everything in the end, like with PD. It's a fucking awful feeling when you see someone so badly transformed by a degenerative disease

thanks for keeping me in your thoughts everyone -- it's easy for me to curse parkinson's because it's something other people can relate to, and so much of my relating to my parents is not-relatable to others (with the exception of only child status, which is why i tend to fixate on that).

(I did think of it from time to time, but didn't know if I should ask; sometimes the relative's ongoing situation is too distressing a subject for some people I've known/had contact with: to be asked about it, esp. but not only in a public forum, so usually I wait for them to bring it up
For clarity's sake - In my initial post I wasn't referring to anyone in a public forum -- I have subzero expectation that people who don't know my parents would even think about them or me at all. I meant people who I have known for decades who also know my parents and I think of as my oldest and closest friends. As I mentioned elsewhere, it's not always the people you think will be there for you who are actually there in times of crisis. And when the crisis lags and lingers and basically becomes daily life for years on end, and no one brings it up, it's easy to just not think about it at all and focus on more pleasant conversation topics (esp when the conversation is limited to text message/group chat)

late to the game but very sorry for all you're going through, LL.

completely otm w/ the 'not always the people you think will be there for you'....sadly :(

There’s not much of him left beyond the vessel. I feel like I said goodbye the last time I was there & the memories of him are still there but that’s pretty much it. The person I knew is gone and has been since Oct 2021 and there’s still a body there.

sorry to hear that LL.

my father had a successful quadruple bypass operation, but suffered multiple strokes during the recovery. when he woke up, his mobility was limited and he showed signs of dementia. we expected him to recover initially, but his condition steadily declined for the remaining 8 years of his life.

i had a somewhat strained relationship with my dad, which is not to say we weren't close. the upside to his dementia was that it made him unaware of his deteriorating condition. he had no idea how sick he was, and was uncharacteristically upbeat when he was able to communicate.

ime losing someone so gradually makes it difficult to access your own grief. it's a slow drip instead of an outpouring if you can access it at all. the impact is blunted when you've already been living with the absence of someone who's body is present. there's no traumatic event that disrupts your life and says, "you must deal with this now". just a quiet, perpetual drip.

sorry to hear that about your partner as well, calzino. are you caring for her and your son by yourself??

LL I’m really sorry, I haven’t had this happen to a parent but I watched the only grandparent I had dwindle through a degenerative condition and it is horrific, I can’t imagine your pain. (Sorry I haven’t clicked on this thread till now, the title is horrific)

Thanks gyac <3

Deflatormouse you zeroed in on two aspects of this that have been especially vexing — there was a sudden unexpected incident that precipitated the majority of decline, and that was deeply shocking but did not result in death so that part has been excruciatingly slow, like very much a drip drip drip situation.
I can’t even begin to get into our relationship/family dynamics — that certainly isn’t making any of this easier for me to figure out how to deal w all of this.

then on to the cognitive decline then to burgeoning dementia.

Although wtf try to say anything "positive" at all? It's something that I've see as well, and I'll take it.

xps

Yes I do it alone but I'm trying to work on getting some more help. A very slow process and it's difficult to identify what could be useful, not trying to do a politics derail here - but the state of social care in the UK is not good and from experience I've learned that substandard care causes more problems than it solves. You are right about the slow drip of grief with degenerative conditions, long despair brings multiple waves of grieving and shock - it really fucks you up.

Yeah that part is a complete mindfuck if I’m being totally honest. Talking about it feels like a betrayal and I grew up with/was trained to have an extreme privacy mindset. Less than that was a dangerous betrayal. I recognize that this wasn’t healthy now but it’s super deep in my psyche. It’s a lonely place to be under these circumstances.

that's heartbreaking for it to happen to your partner, mad love and respect to you calzino. unfortunately, you are otm about substandard care causing more problems than it solves and i hope you are able to find the right help soon. most of my extended fam is in the UK & given how dire things are (America is even worse) it's basically impossible to navigate all that while caring for both of them at the same time. fuck.

LL your friends suck if they're making you feel like you need to walk on eggshells. group texts kinda suck in general & are not conducive to talking about this stuff as you seem to be saying.

i'm not trying to use this as an opportunity to complain about my friends -- it probably sounds that way. they are not making me feel any particular way, they all have a lot going on and i understand how i am not at the center of their consciousness. it feels futile/counterproductive to get upset about it so i have been working on acceptance.

Your frustration with your friends not bringing it up is understandable, especially since talking about it at all, much less bringing up yourself, is in conflict re privacy mindset being instilled/grown up with; I have some of that too. But anyway, we ilxors care. Good night, get some rest, hopefully.

thank you for that post -- it helped me feel genuinely understood. such a rare thing and so emotionally nutritious. thank you.

You're welcome!

much sympathy to LL and calzino (and anyone else reading this). my childhood was sorta defined by my mother's progressive illness and death (MS), it's such a huge dark thing I don't even know how to find a way in to talk about it with people, or how it explains some odd family dynamics in the present. I'm immensely glad (and lucky) I have some childhood friends who were there and saw it up close, so it requires no explanation when I'm with them.

it impacts your life in such myriad ways. feeling crushing guilt any time I talk about how it makes me feel compared to what my mom went through, the reflexive impulse to project normalcy at all times so people see your relative as a person and not a disease, and how isolating it is to be successful doing that. and then, like LL says, when you finally do need to talk about it... you don't even know how to begin. even typing these couple paragraphs has just about wrecked me for the day but I'd hate to think anyone going through it thinks they're doing anything wrong or shouldn't be overwhelmed.

so sorry f hazel that's a horrible thing for a mother & child to go through <3

LL i'm sorry for my last comment. fwiw i wouldn't want any friend of mine to worry about being a "vibesuck" under any circumstances, and certainly not in this case. but sorry for framing this as somebody's fault, your friends probably feel the same way.

I was a sucky or feeble default friend in this regard all during high school, when two of my classmates' family home was a hip gathering place: their Mom was cool but no fool; their Dad seemed deflated, just sat around, and we somehow knew that he was a long-time alcoholic, maybe depressive as well, but as far as I could tell (not that I ever asked any of our other friends, 'til long after), nobody ever brought it up. Once his teen daughter asked him, "What do you think of this song, Daddy?" "Pretty good, Honey." "Well, I think--" That was the only time I can recall him speaking, and I think I was startled to think that they had any kind of conversation.
(I don't know which of us brought it up, but years later, his wife gave me some backstory, leading up to the phase I'd seen/not seen. )
When he finally died, I wrote a letter to his son, saying I was sorry in the first sentence, and immediately changing the subject.
Back in high school (and yeah, for quite a while after), there was a general thing: none of us could talk about our families, because almost everybody else's seemed so Normal. A number of Daddies were still in the prime time of working x drinking.

Oh, and also, a few years after high school, he moved into a trailer park, living by himself---I don't know if he got harder to live with, and/or wanted the isolation. I still thought about him from time to time, but still---never brought him up, however much other perspectives changed, and friendships with his family members continued.

it impacts your life in such myriad ways. feeling crushing guilt any time I talk about how it makes me feel compared to what my mom went through, the reflexive impulse to project normalcy at all times so people see your relative as a person and not a disease, and how isolating it is to be successful doing that. and then, like LL says, when you finally do need to talk about it... you don't even know how to begin. even typing these couple paragraphs has just about wrecked me for the day but I'd hate to think anyone going through it thinks they're doing anything wrong or shouldn't be overwhelmed.

otm, thank you sharing in spite of it being a slog. i am trying to do the same to varying degrees of success <3