parkinson's disease: c/d?

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.