Ask HN: Those with Parkinson's relatives what do you do to improve their lives?

https://news.ycombinator.com/item?id=33705996

8 13 4 years ago

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My mom has Parkinson's disease, she take Sinemet and Olanzapine(for sleep). But sometime she get something similar to panic attacks when she feared something or was not able to do a chore that she used to do. ex: cooking.

When I notify about this to doctors they prescribed anti-depressant medication(Duloxetine + Mirtazapine, Venlafaxine), but given those meds, my mom complain that there is burning sensation in body after taking them, so we stopped those meds. It seems to be Dr have miss diagnosed this as depression even though those panic like attacks only occur due to some incident in the environment as I said earlier. Has anyone had similar experience with loved one with PD? If so what did you do?

I myself have OCD and recently diagnosed with ADHD, due to undiagnosed ADHD I I am struggling financially, but when I am hearing mom's pain I have hard time working.

I am aware this is not the place to ask for medical advice. but any advice regarding this matter is highly appreciated!

pryelluw2• 4 years ago

Ive been in a similar situation. My mom was diagnosed with terminal lung cancer. Her care was more about improving quality of life.

Whilst struggling to deal with all the different variables, a very wise surgeon told me to keep a notebook of everything. Medications, complaints, pain reports, etc. This allowed to share more direct data with doctors and nurses. Mom’s QOL increased noticeably. Mine did too as a result as her main care taker (I was living in the hospital with her).

Second the doctor told me to do the same for myself. Start journaling about yourself. Now, I also have ADHD. Doing it was a challenge. What worked for me was doing so immediate after waking up. I would write about whatever right when I woke up and be done for the day. Sometimes I’d write again during the day but not very often.

Third, know that taking care of a loved one is really fucking hard. Oh my god so so hard. You will feel guilty and powerless. Like the biggest piece of shit failure. That’s normal. Try and be a little kinder to yourself.

Fourth, put yourself first. Take care of you first. Otherwise you won’t be able to take care of her well enough. You first puts her in the best possible position.

Fifth, ADHD can be improved with medication. It does help. Don’t be shy to try it. You might also be depressed due to the situation. Make sure to tell your doctor.

Sixth, be open to receiving help. There are organizations and hospitals out there that have services for people in your same situation. I even received grief counseling during the hospital stay. Don’t trust google on this one. Pick up the phone and call the local hospitals. Explain the situation to anyone who will listen and ask if they have any free services or know of any free services you can leverage.

There’s a light at the end of the tunnel. If you need to speak your mind and share, there’s groups like this one: https://m.facebook.com/groups/113354218750970/ These groups are very helpful and full info and support. Take advantage of them and learn quicker. I was able to find a good online group and got so much from it (FREE).

Best of luck.

nerdyadventurer4• 4 years ago

Oh my god so so hard. You will feel guilty and powerless. Like the biggest piece of shit failure. That’s normal. Try and be a little kinder to yourself.

With ADHD's emotional dis-regulation this is what I felt too.

Fifth, ADHD can be improved with medication. It does help. Don’t be shy to try it.

I am actually on Ritalin, while it sort of works, improve my mood, boost my motivation, but my working memory is still in flux, body temperature increase after taking them and I notice effects Ritalin decrease over time. Another thing with Ritalin is I feel mentally bad when medication starts to wear off. I will ask for off label med like Bupropion, which is cheap, long lasting and have no withdrawal symptoms like stimulants.

Thanks for the all advice, really appreciate it! Keep fighting!

pryelluw2• 4 years ago

I take vyvense and works well. Tried others but this one worked best.

I know it’s hard but one day at a time. Think of it as a wave. Up and down. Up and down.

It’ll all pass. Life continues. Everything will be alright.

spaceman0997• 4 years ago

Weed. The only thing that made my grandfather's life bearable (and even enjoyable). His tremor went away almost immediately (for the duration of the effect - 4-6 hours) and he could move swiftly and painlessly, even do some woodworking, brew his coffee, eat soup, and other tasks like that.

He consumed the THC extracted to alcohol shot (I guess some homemade spirit). The amount was low enough to not have any visible effect on his behavior.

One plant grown on their garden (legal where they lived) was enough for a whole year, and there were leftovers.

mr-developer2• 4 years ago

I guess there are several types of Parkinson's disease. My mother has Idiopathic Parkinson's. Basically her body becomes stiff and rigid like a rock without meds on time.

She was diagnosed at age 60 years (8 years ago) which the doctor said is fairly early for age.

The treatment is Syndopa tablets (Levadopa + Carbidopa) at regular intervals.

We have changed about 3 doctors till now. Each doctor had his/her own philosophy towards treatment mainly with regards to medicine dosage and exercise.

Her initial doctors put her on a low medicine dosage and she wasn't responding to it. One more doctor recommended neuro physiotherapy. That didn't work as well. Her condition became worse day by day. Once she lost her balance and fell down and there was severe hip fracture.

One thing to take care with Parkinson's patients is to prevent falls. Its worst thing that can happen and hamper quality of life.

Current doctor increased her dosage and decreased the intervals between dosages. This helped her a lot and she is fairly stable for the last 3 years.

There are other tablets too. Xafinact for better motor movements and Pacitane to reduce tremors and palsy.

The main problem with Parkinson's is that body gets used to drugs and starts resisting. So dosage requirements will increase. Also mom initially had only body rigidness. Later tremors and palsy started to develop. There are constant mood swings and depression. She feels dizzy regularly. Recently she has started mildly hallucinating. There is urine incontinence too. I believe things may go further south in next 5 years. But I'm hoping that medicine will help as long as it can.

Our doctor recommended DBS surgery. But we cannot afford it unfortunately. I heard with that surgery Parkinson's will be manageable with very low doses of medicine.

Ultimately what i see in my mom is that disease follows a cyclicals pattern of ups and downs. Some days are good, some are worst. It's a slippery slope overall.

I always wondered how my mom got Parkinson's. Nobody even doctors cannot tell it. I have a theory with my own internet research. She took Statin tablets (Atorvastatin) for controlling her cholestrol levels for a very long time 15years. I believe that may have triggered Parkinson. I recently read a research paper about it - https://www.sciencedirect.com/science/article/abs/pii/S13538...

My uncle also had Parkinson's. His was slightly different kind. He did not take medicines properly and died a few years ago. i believe he too had long term B.P & Cholestrol medicines.

nerdyadventurer4• 4 years ago

First thanks for reply!

My mom also have Idiopathic PD, no one in family has it.

Ultimately what i see in my mom is that disease follows a cyclicals pattern of ups and downs.

This is my observation too.

My mom also had auditory hallucinations even tried to suicide with long term use of Amitriptyline, so we discontinued it. Recently she started complaining about urine incontinence.

How did you managed mildly hallucinations, mood swings, urine incontinence? Any medication to improve the mood?

mr-developer2• 4 years ago

Regarding the hallucinations, the doctor said it's still early. So he told my mom if she sees something scary, just remember it does not exist. Always check with someone around you. Try touching it and make sure of yourself. I guess if hallucinations get worse tablets may be required.

She stays at home all the time. The bathroom is just a few steps away. So incontinence hasn't been a major problem. When we go outside, there are always diapers.

nextos2• 4 years ago

If a loved one had early stage Parkinson's, I would probably focus on improving their gum health and I would consider enrolling on antiviral or antibiotic trials. These may slow down or halt the disease.

There is growing evidence that some forms of Parkinson's are caused by pathogens which enter the body through the oral cavity.

nerdyadventurer4• 4 years ago

Can you please direct me to those research?

nextos2• 4 years ago

This is a good starting point: https://scholar.google.com/scholar?cites=1704433775853960020...

catherinerob• 4 years ago

I was diagnosed 2011. i was diagnosed with Parkinson’s disease. My symptoms progressed quickly. Soon i was having difficulty breathing, swallowing and even walking short distances. With the help of Health Herbs Clinic natural herbs I have been able to reverse my symptoms using diet, herbs, which i feel has made the most difference. The Parkinson’s natural formula immensely helped my condition, it reversed my Parkinson’s. my slurred speech, then the tremors, and mobility gradually disappeared, even my handwriting is getting better, I’m now playing golf again. and i turned 69 next month. i am glad to get my life back DON’T GIVE UP HOPE!!! Visit HEALTH HERBS CLINIC via their official web-site www. healthherbsclinic .com

nerdyadventurer4• 4 years ago

My mom is also in mid sixties, glad to here there is hope!

Can you please say which natural remedies helped to improve your condition?

midlightdenight• 4 years ago

I’d be weary of the above comment. Searching for similar stories online has lots of spam posts saying similar things. Same bad grammar too. Usually they tell you to go to that website or one with almost the exact name that’s been shutdown.

Ask HN: Those with Parkinson's relatives what do you do to improve their lives?

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