parkinson's disease: c/d?

so my 67-year-old mum was diagnosed with parkinson's a couple of months ago, after a couple of years of serious tremors in her left foot which was misdiagnosed three or four times, and a year or so after her left arm started to pull up and stiffen into a kind of sling-position, tucked into her side

she's now started on a drug regimen which seems to have helped calm the tremors, although they've also left her feeling queasy most of the time

so far she's been dealing with it with admirable calmness and i've been doing my best to support, although tbh i don't think it's quite sunk in for me yet. my dad is always difficult to read but i'm sure he's quietly devastated

i've read weed can help control the tremors but i don't imagine my straitlaced mum would be too enthusiastic about firing up a fat one, regardless of the benefits

i dunno what i'm looking for here but if there are any ilxors who've had experience on one level or another with parkinson's i'd be grateful for any advice you might have on treatment, coping with the effects... anything really.

hi BG, my dad had parkinson's for many years: ask away!

adding: i doubt i have much useful to say about specifics of medication: i didn't kept a record and have forgotten all the various names now: as his mind was good to the end, and he was very scientifically minded, he policed his own routines very effectively. he was on a *lot* of difft regimens over the years -- he was diagnosed in 1967, died in 2010 -- and approaches to treatment changed greatly over that time, as new drugs were trialed. dad's was a slow on-set version, as it sometimes is when ppl develop it young -- 43 yrs is an unusually long time to be living with it, from 36 y/o to 79…

here's a thing i wrote abt it a few years ago, i don't know how helpful it will be, but it does touch a little on symptoms, psychology and how these affect carers and family : http://freakytrigger.co.uk/ft/2012/02/music-poetry-parkinsons-disease/

thanks mark - i liked that piece a lot, and your dad's poem particularly. i think my mum would like it too, i'll need to send it to her.

at this stage we still don't really know much about how things are going to progress for her, and how quickly - it's apparently a bit of an unusual case in that it's only affecting one side of her body at the moment, although it's anyone's guess as to whether it'll remain that way

the doc who diagnosed her was fairly upbeat about her future prospects - he said that, at her age, something else was probably going to kill her before parkinson's did, which is the kind of extremely dry humour i appreciate in a physician

i guess it'd be good to know what the progression of your dad's illness was like, and, if it's not prying too much, what the end stages were like for him and for the family? from the little I've read it sounds like there's a huge variation in how it progresses from person to person but more than anything right now it's the uncertainty of everything that's most troubling, i suppose

not ignoring this: will write something up over the next few days

I've been a hospice social worker for people with end-stage Parkinson's. You are so OTM about how much the disease varies from person to person, which makes it much harder to help people know what to expect vs. something like metastatic cancers, when we are better at predicting how things will play out.

Now that I think about it, I've often seen Parkinson's in the hospice setting as a secondary diagnosis and not their primary diagnosis. In other words, the person has PD but is in hospice because of an advanced cancer or heart/lung disease or the ever-vague "adult failure to thrive/protein-calorie malnutrition."

Anyway, I am by no means an expert on this but lots of people live a very long time with well-managed PD symptom and die from something else entirely. And others really struggle. Several people I've worked with have found support groups really helpful--your local APDA chapter may be a good call for assistance.

https://www.apdaparkinson.org/community/

thanks quincie, appreciate your input - i'm a britisher but parkinson's uk seems kinda analogous to the apda. neither of my parents really seem like the support-group types but i've already started gently nudging them towards thinking about it; they don't have a huge social circle at home and i dunno how communicative they are between each other about this so i think it'd be useful for them to meet and talk to other people if they can

no problem mark - look forward to reading whatever you put together whenever you're ready

i am here to say something simple: super mega fuck this disease and the trash beast it rode in on.

proposal: we should change the thread title to something else because it is never classic, it's roundly and profoundly terrible in fact.

four and a half years after starting this thread, i can only agree on both points

i am not trying to scaremonger -- i am truly sorry if it sounded that way in my previous post

i am reeling from the decline of my dad and what this disease does to people. it's especially difficult when dealing with it as an only child, regardless of my advanced age. this disease sucks.

i’m an only child and my mum has parkinson’s, and i’ve definitely noticed a decline in her over the last 18 months

i had to take her for a pcr test and her befuddlement at every step of the process was really distressing to see

I didn’t know you were an only too! 💕
The decline sneaks up on you as well as taking 150000 years.
Additionally I do not have and have not had the greatest relationship w my dad and it has made seeing through the disease really difficult.

i see i promised to write something in 2017 and never did, sorry abt that

2017 was the year my dad was diagnosed, or at least when they told me about the diagnosis. He had had tremors for a long while before getting an accurate diagnosis & treatment from a proper neurologist.

I also didn't know that Joan Didion had it, I thought her main issue was MS but this crap disease just dgaf does it.

my best friend's dad died from this last year ... and the year or so before he died, they had a webcam in his room in the assisted living hospital and my friend showed it to me, and it was just heartbreaking af ... like the obvious pain and misery. The guy had been a brilliant math professor (and a very bad alcoholic for much of my friend's childhood but that's another story), and it's just super rough seeing stuff like that.

so so sorry LL, these type of diseases are the most heartbreaking, he's lucky to have someone like you in his life

It’s a particularly shitty disease for sure. Very sorry you are impacted :(

I’m so sorry LL. Fuck this disease so hard. Burn it and salt the ground with salt IMO.

multiple sclerosis can go fuck itself as well.

this disease can FOAD
it has stolen everything about my dad and left him trapped inside a shell of a person. i hate it, i smite it, and i wish it the worst

watching my dad try to eat spaghetti was more than i could handle.

like when i need to cry in the future, i will think of him trying to eat spaghetti

I’m sorry. I really am.

Would help you smite
Please hand me an axe

🪓🪓🪓🪓🪓🪓🪓🪓🪓
Tomorrow we are eating gumbo I made for thanksgiving and saved/froze, which was his favorite thing to cook. I told him about it yesterday, holding it in my hand, and he didn’t register any understanding of what I was saying. I understood and just put it in the fridge, but I knew then the extent to which he had been consumed by this shitty awful mfing disease. It can eat rancid meat many times over.

The gumbo was good
He enjoyed it!!

well that is something at least <3
gumbo rules!

so sorry for what your dad is going through, fuck this horrible disease x 1000

If forced to choose between Alzheimer's and Parkinson's. . .

I'd choose the former I guess.

For myself at least.

I would like to add that anyone suffering from this disease should be THOROUGHLY SCREENED for depression, not just casually screened but asked the tough questions, especially if they are already displaying signs of depression. The risk of suicide is dramatically higher.

if your neurologist doesn't screen for mental health issues, doesn't explicitly ask a PD patient about depressive symptoms, is that negligence?! i haven't let go of the fact that, when confronted and asked directly, my dad's neurologist admitted he did not routinely screen for depression and definitely did not screen my dad.

i briefly went down a research rabbit hole in my school's library before being pwned by vocabulary i didn't understand and neurotransmitters etc. it was also too depressing to continue trying to understand. i am so disappointed in this neurologist. he also refuses to do telephone/videocall visits and housecalls even when his patients are bedridden nursing home residents? ugh i am angry at the doctor.

i don't know the relevant laws in the US obviously, but depression as a consequence of PD is pretty common (as are other MH issues: side effects of medication regimes etc) -- so i would defnitely call this inadequate doctoring!

my mom had a neurodegenerative disease and was screened for depression by her neurologist over thirty years ago, there's no excuse for a doctor not doing that today.

that is exactly my thought too. when my mom and dad met with him (for the first time since my dad was hospitalized) i had two questions for him:
1) what is your procedure for screening your PD patients for MH issues?
2) when did you perform this screening on this patient (dad)?

His answers were honest at least -- he said 1) I treat it as a movement disorder not a MH issue 2) regrettably, never

if i think about it too much i feel like my nervous system is on fire so i am struggling with how invested i can be in kicking this doctor's ass.

i have to be screened for depression for a routine physical -- i feel like there is no excuse for this doctor!

There is no excuse, but this is not unusual, and I have never seen a legal remedy pursued. Possible recourse is a letter to the state licensing authority and whatever boards the doc belongs to. And/or getting a new doc.

I am sorry you and your family are going through this. A lot of docs are not that great at all the things, and definitely tend to compartmentalize into their own little specialties—outside of which they consider “not my problem.”

if you know of a sample letter, i would love to see it. i don't have the juice to write it from scratch because this whole situation + two new jobs + pandemic has me tapped out. also getting myself riled up and angry has palpable negative effects on my own health and i can't afford to make myself worse to compose a futile angry letter.

And/or getting a new doc. Def worth considering vs. red tape x stress, in my experience.

Or even if you do write a letter.

the problem with that is that my mom is already completely overwhelmed with this whole situation and they don't live in an area with a lot of available suitable neurologists (I looked). she has already told me that getting a new doc is more than she can handle. i live out of state.

this doc had me seeing red for a while and i finally calmed down until today when i got angry all over again.

Might it be feasible for him to see a mental health worker as well? Would be another adjustment, complication in schedule etc., but maybe worth a try.

oh lord, please know we have tried everything -- yes, we have tried to get him a mental health worker and it's a neverending series of conversations that don't seem to go anywhere. short staffed, covid, social worker keeps changing because they keep quitting, etc etc etc

on the upside my mom did say she is now willing to consider a support group because she sees that she needs people to talk with who understand what she is going through. and it turns out they meet the third thursday of every month, which is this week!

i don't know this field well and don't wish to complicate this further--there is no good answer and i'm sorry. is it possible to speak to a medical malpractice attorney, not for the purpose of filing a lawsuit but to see if they can tell you what the process is if you do write to the medical board? they might not initially opine on whether it violated any rule but could tell you how long it would take to see any outcome and give you some idea of the likelihood of anything happening. it might (depending on the details of the situation, of course) not to result in a sanction because the standard for professional misconduct is not whether another doctor would have done something different, it's whether their treatment fell below the profession's standards, and even then there are multiple levels of sanction available. if you do want to file something the board should have a form to submit the complaint online which would have the same effect as a letter and will be easier. but wouldn't that result in having to get another doctor, if he was sanctioned?

Oh yeah, I should have thought of a support group, sounds good. Is the idea of a sanction or a warning of one, to improve this doctor's doctoring of your father? Seems like He might respond by withdrawing from the case altogether. If he's honest enough to admit he didn't do shit in this department, maybe (before the letter etc.), you could see if he would agree to monitor for depression, and---if he's too xpost compartmentalized for that kind of treatment---of he might refer your father to a mental health worker---of course he might tacitly agree and then not follow through etc, and then you would have something more to go to authorities with, but just in terms of treatment options first---? No easy way through at all, but yean the support group, whatever else.

uppercase He accidental not sarcastic but yknow

Anyway that's all I know to say, except---keep on truckin---and now I'll shut up.

Im trying. It feels deeply terrible to either accept neglect and subpar care
Or
Raise a huge fuss and all that entails with the knowledge it probably won’t amount to anything

I loathe this cursed disease

re: medical malpractice attorney --
my mom went through an ordeal a few years back that ended in a trial and the other side (the doctor's side) hired a dirty lawyer who maligned and smeared my mom's character and her body (!! i know, it's profoundly terrible) and she lost the lawsuit. she's understandably gunshy about going through that again, as am i

the choice between "accept this lackluster care" and "accept this legal abuse" isn't one i see us making even though i remain sizzling with anger about this.

well i guess we don't have a choice really, i meant i don't see us choosing to fight when fighting has resulted in more pain in our experience. i don't have the ability to persuade my mom differently, and i can hardly blame her for feeling that way.

there is no choice in this scenario that results in less pain
it's just nonstop pain
thanks to the scourge that is PD

God, yes. But would it be possible to negotiate something like this, prev. mentioned:
If he's honest enough to admit he didn't do shit in this department, maybe you could see if he would agree to monitor for depression, and---if he's too xpost compartmentalized for that kind of treatment---of he might refer your father to a mental health worker---of course he might tacitly agree and then not follow through etc, and then you would have something more to go to authorities with, but just in terms of treatment options first---? No easy way through at all, but yeah the support group, whatever else.

That about authorities was much more about thinking of a complaint than a suit, and maybe your mother wouldn't want either, but anyway negotiating in terms of possibly improving care.

yeah i was talking about someone to walk you through the complaint process and advise whether it's worth it, not suing

forgot about this, posted way upthread by quincie: https://www.apdaparkinson.org/community/

This is for LL, sorry to others for long, though maybe it is more broadly relevant in an Aging Parents context (I should probably post it there, too?). "Marci" is "Marci Medicare," a twee question-and-answer format put out by the Medicare Rights Center:

Dear Marci,

My mother recently received a misdiagnosis, resulting in unnecessary and painful treatment. We are so upset about her situation but are not sure what to do about it. Is there anything Medicare beneficiaries can do when they receive poor quality of care?

-Vincent (Abbeville, SC)

Dear Vincent,

I am so sorry to hear about your mother’s situation. If you have a concern about the quality of care she received from a Medicare provider, your concern can be directed to the Beneficiary and Family Centered Care-Quality Improvement Organization (BFCC-QIO) for your area. The BFCC-QIOs are made up of practicing doctors and other health care experts. Their role is to monitor and improve the care given to Medicare enrollees. BFCC-QIOs review complaints about the quality of care provided by physicians, hospitals, skilled nursing facilities, home health agencies, and ambulatory surgery centers. 
 
Examples of situations about which you might wish to file a quality-of-care complaint include: 

A medication mistake 
Developing an infection during a stay in a facility
Receiving the wrong care or treatment 
Running into barriers to receiving care 
 
You can file a quality-of-care complaint by calling your QIO or submitting a written complaint. When the BFCC-QIO gets your complaint:

They should call you to ask clarifying questions about your complaint and to get the contact information for your provider.
A physician of matching specialty will review the medical record to determine whether the care provided met the medical standard of care, or whether the standard of care was not met.
You and your doctor will be notified by phone and in writing when the review is over (the review process can take up to a few months).
 
Livanta and KEPRO are currently the two BFCC-QIOs that serve the entire country. To find out which BFCC-QIO serves your state or territory and how to contact them, visit www.qioprogram.org/locate-your-bfcc-qio or call 1-800-MEDICARE. 
 
If you have a Medicare Advantage Plan, you can choose to make complaints about the quality of care you receive through your plan’s grievance process, through the BFCC-QIO, or both.

Your state may have other ways for you to file a complaint about a provider or facility You may be able to file a complaint through the consumer or patient protection sections within your state’s office of the Attorney General. You can also consider filing a complaint through the state licensing boards that oversee providers, for example, the Board of Medicine or the Nursing Board.

I hope your mother is doing better and that this information is helpful to you all.

-Marci

I’m really sorry I didn’t respond to above post sooner — I have abandoned my rage toward the doctor bc I can’t deal with it and believe there’s nothing productive that will come of pursuing any further action against him.

Just came here to say quadruple fuck this cursed disease.

Also thank you for the info quincie ❤️

I have been in the fight vs let it go place myself recently in the dumpster fire that is the US healthcare system. It is tough to be drawn in both directions at the same time! And yes, fuck PD a million billion times and repeat.

question -- does anyone know anything useful about parkinson's patients being prescribed ritalin/adderall for quality of life issues? i have tried to do some reading but i am not very conversant in the language of medications, neurology, or scientific articles and i figured i would ask. my dad's neurologist (the same one) has floated it as an idea. so far, all i can tell is there is a lot more online discussion about whether amphetamines cause p'sons than how they are being used to treat it.

I no longer have awesome academic library access, but there is a free full-text article that addresses Ritalin (generic name methylphenidate) at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4020145/. Relevant section below, sorry for long:

Methylphenidate (One New Study,32 Conclusion: Insufficient Evidence) Mendonça et al. (2007)32 examined the effects of methylphenidate (30 mg qd) for the treatment of fatigue in PD in a double-blind, placebo-controlled parallel-group RCT. Thirty-six patients with idiopathic PD, on stable antiparkinsonian medications, and with a score ≥27 on the Fatigue Severity Scale (FSS; scores 0–54, higher scores indicate greater fatigue) were randomized to receive either methylphenidate 10 mg 3 times per day (tid) (n = 17) or matching placebo (n = 19) for 6 weeks. Exclusion criteria included psychoactive drugs that might interfere with stimulant functioning, active depression on clinical interview, active substance abuse, and objective weakness or fatigability on physical exam. Primary outcome measures were change from baseline on 2 separate self-report fatigue questionnaires: the FSS and the Multidimensional Fatigue Inventory (MFI; scores 0–80, higher scores indicate greater fatigue). Secondary outcomes included change in UPDRS motor score and change in the 5 subscores of the MFI. ITT analysis was applied. Eighty-two percent (82%) of methylphenidate-treated patients and 84% of placebotreated patients completed the study on randomized treatment. Both FSS (mean change, 6.5 points; 95% CI, 0.5–12.4; effect size, 0.79) and MFI (mean change, 8.4 points; 95% CI, 0.7–16.0; effect size, 0.63) scores were reduced significantly in the treatment arm over the course of the study (P < .04), and the placebo group did not experience a significant decline (FSS: mean change, 1.9, 95% CI, −3.4 to 7.2; MFI: mean change, 48.5, 95% CI, −4.1 to 10.5) over the course of treatment; however, statistical analysis for the 2 primary outcome measures was not corrected for multiple comparisons and no direct comparison of methylphenidate and placebo treatment was made. Examining MFI subscores (general fatigue, physical fatigue, reduced activity, reduced motivation, and mental fatigue), the methylphenidate group experienced a significant reduction only in general fatigue with treatment (P < .001). There were no changes in UPDRS motor scores over the course of the study in either group. Side effects and the frequency of occurrence were similar between the 2 treatment arms. (Quality score, 74%.)
Efficacy Conclusion Although results appear to be positive, the quality score of 74% and methodological concerns (the study had no correction for multiple testing and did not analyze between-group differences) mean that there is insufficient evidence for efficacy.
Safety Conclusion Related to Methylphenidate (Conclusion: Insufficient Evidence) There were no safety concerns identified in the above reviewed study on methylphenidate for the treatment of fatigue in PD. Methylphenidate, however, has the potential for abuse35 and concerns have been raised that long-term therapy might cause drug dependence, psychotic symptoms and behavioral sensitization, similar to other stimulants.36 The fact that methylphenidate is a controlled substance in most countries, and that there are a lack of safety data, especially over the long-term, concerning methylphenidate's cardiovascular effects— including increase of blood pressure or elevated heart rate in elderly populations,37 mean that there is insufficient evidence to make conclusions on its safety.

Yeah I found that too. I tried to read it but I don’t really get it. I do have access to an awesome academic library I just don’t have the knowledge base to understand what I’m looking at.

IANAD but I do have a biomedical background and my take home for this is: don't know if there is likely to be a benefit, may be a risk, but not so much risk so as to conclude "definitely don't use this." So depending on the situation, it may be worth a shot. At least that is how I would view it for myself/loved one as a patient.

I don't see anything in the peer-reviewed literature about Adderall (mixed amphetamine) for treatment of PD. That, in my mind, makes it seem more sketchy than the Ritalin option.

What's the symptom being targeted? Fatigue? Apathy? Depression? Other non-motor symptom?

I need to be able to communicate/translate this info so my mom understands too. She asked me to look it up bc the doc suggested it.
So far I’m mostly concerned about potential side effects like agitation/paranoia/loss of appetite bc those aren’t out of character for him (pre-hospitalization) without stimulants in his system. So I’m not sure what to tell my mom.

Symptom being targeted is apathy/lack of quality of life/zeal. He was hospitalized due to an incident related to previously undiagnosed depression. :( :( :(

When I've worked with advanced PD ppl, and things were super shit, there was often a "doesn't hurt to try, what's the worst that could happen" approach. The thinking being that if agitation/paranoia/etc. was worsened, then you discontinue it--but taking the risk might be worth a potential benefit if the situation is utter crap.

xpost These two drugs don't seem to pop up specifically for apathy, only fatigue. If apathy is the target, these stimulants don't seem to be go-tos.

re: treatments for apathy in PD, see Table 3: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6916382/

Ok this is good info — it’s something I can present to mom concisely. She doesn’t want citations, only informed advice. Thank you, I appreciate it!!

I have no background in reading this type of research, it’s frustratingly hard to come to my own conclusions.

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