Experience with Parkinson's Disease?

an aunt died from it

My father in law has it and declined significantly in the past 4 years since being diagnosed. Super sad can’t walk and talking is becoming more difficult. He is in a home now. Terrible disease.

My dad was diagnosed 9 years ago.

Aside from a tremor in his left hand, he appears virtually asymptomatic. He’s in the top 99% in his cohort.

My mom died suddenly this summer, and his deterioration is accelerating. More psychological than physical.

It sucks.

My dad has Parkinsons, and it was really bad last year. He could barely stand and walk, and he couldn't hold his silverware, and was having trouble drinking and swallowing. We thought he was a goner because he had become so weak and disabled. But then we got him on a Carbidopa/levodopa regimen and hired a caregiver to exercise him regularly, so he's much improved.

The problem with Parkinson's is that initial symptoms are the same as many other diseases, so unless a person exhibits several symptoms of Parkinson's, it is rarely diagnosed straight away. And by the time somebody has several symptoms, it is too late for meaningful interventions.

I learned this first hand. My aunt had trouble sleeping for a couple years, then started having startling dreams at night. She was 55. Finally she went to a GP, who prescribed her Ambien. A couple years later, she started having bouts of depression, so her GP prescribed her an anti-depressant. Later, she started having trouble walking normally, which her GP blamed on the Ambien and her age. She was almost 60 and her demeanor, mood, sense of humor -- everything about her was so different from a few years earlier.

Five years after first seeking treatment, she finally went to the Cleveland Clinic, where she was diagnosed with PD within a month of seeing different specialists. They said that it was too late to start some of the therapeutics, so they basically tackled each symptom on its own. Five years wasted.

Then this spring, just before the shut down, she started a new drug therapy and, I am happy to note, she SEEMS to be doing much better. We FaceTime almost like we used to several years ago, but I can tell that she has diminished cognition. That makes me very sad. PD is such an insidious illness.

I read the disease itself doesn't kill you but that "falls" or "pneumonia" can be the ultimate cause. I'm taking someone I've known and loved for a long time to a specialist this week. He's 65 and has been on disability for many years. He's kind of like a "Forrest Gump" type character, a real sweetheart with a variety of limitations and comes from a rough background of bullying and scratching to make a living all his life, supporting himself doing jobs like plant maintenance and working as a home health aide. He helped many men out of this world during the AIDS crisis (which is when I met him). He's a vet and relies on them for his healthcare. A doctor there says "no PD or MS," but I read down the symptoms on Google and he's got all of them. Appreciate the input.

My grandmother had it and lived into her early 90's. It was relatively under control with medication and she was very good about doing her daily physical therapy. I think keeping up an exercise program is key.

It rendered me unable to buy alcohol for teenagers and their dance parties. So tragic.

My grandfather had Parkinson's. He lived to 95. It really only gave him trouble starting at 90. His care was through the VA as well.

My grandfather had it and I knew someone else that had it for 20 years . He described as being trapped in your own body. Your mind is perfectly fine. I wouldn't wish it on anyone.

I had a colleague who developed it in his early thirties. The dyskinesia has become more severe and visible in the ten years—he makes Michael J. Fox look like Fred Astaire. Vicious disease

My mother has had it for 15 years. Honestly, some days are good and some are bad. She was doing terribly a couple of years ago until she got into a trial for a medication and now she can move around by herself. Although you can tell if she misses a dose by as little as 30 minutes. Her doctor suggested the surgery at one point but then added that it's not permanent and doesn't always work. So she just takes her meds and keeps track of her mood since stress seems to aggravate it.

For her it started out as a tremor in her leg that made it seem like she couldn't keep it still. A doctor friend of hers watched her for about a month before he suggested she go get it checked out because while she couldn't make that kind of a diagnosis she felt something was wrong. (She had a conversation with her and put her leg next to hers to see if it would stop shaking and it didn't.)

I knew someone with it, and he eventually died from it. It was a years long event. The only shaking he had was in his hands and arms. But he also had a litany of other maladies such as bipolar disorder, schizoaffective disorder, diabetes, and other things I can't even remember. He lived 10 years longer than anyone ever thought he would.

Never had it, never will.

I developed a tremor in my left hand about 20 years ago. It still comes back when I'm in an anxious state. I've also had Tourette's like talking out loud when I'm home by myself. Things seem to be under control now, but it stays in the back of my mind that things could get worse.

I had a grandfather with a tremor who was never formally diagnosed and who died of a heart attack at 73. My grandmother (an RN) always suspected he had Parkinson's. From my understanding, it's usually not hereditary, and no one else in the family has had it (or its symptoms).

On the other hand, both my grandmother and mother developed Alzheimer's, and their declines were eerily similar.

My dad has had it for the past 10 years or so. He's 82 now. It really debilitated him at first, but then he decided he would join a fitness program for Parkinson's patients and it changed his life. He is back walking strong, playing golf, his ability to write is back too. He doesn't miss a daily workout for anything. On the few occasions he's had to miss a couple of days, he starts declining quickly. In addition, he's following all doctor orders and taking his meds.

A friend has had it for 30 years. During the first twenty he gradually lost the ability to walk and then to wheelchair. For the past decade he’s needed live in care and his mind is still sharp (during the 12 hours he’s not sleeping), but communicating is difficult (nods, signs, etc).

He’s lucky to have VA care and a well-to-do partner.

r17 I had no idea that symptoms can be reversible

We all go through life using a fraction of our true. capabilities. If one really works hard on a fraction of declining strength, I suspect it can appear to be an improvement or plateau.

My father was diagnosed with PD when he was 79-80 and is now almost 87. It’s well-controlled by his medication but he absolutely can’t miss a dose or even go too long between doses. He’d be much better off if he did his PT but simply refuses to, because he’s cussed. And he’d rather complain than do something minor to improve his condition.

R19, I don't know if I would say my dad's symptoms were reversed. Well, I suppose they are, but mostly held at bay by his determination to not let this thing get the best of him. I guess when I think of reversed symptoms I think that the symptoms have been reversed and will be gone forever. He's one week of not going to the gym away from it all spiraling back.

Regardless of semantics, I'm glad my dad's stubbornness is working in everyone's favour this time.

My father was diagnosed in his late 60s. He died aged 94 from an unrelated illness, and until about 6 months before his death he was perfectly able to potter around his house and garden using a walking frame. It had a seat and a tray attachment and gave him a lot of independence. On the other hand, my uncle developed it in his early 60s and didn’t last a decade after diagnosis, most of which he spent immobile.

The trouble with Parkinson’s is that there are several ways in which the disease can progress, and it is very difficult for even an experienced neurologist to give a prognosis. The disease is still not fully understood, and there haven’t been any major drug breakthroughs in 25 years or more (or there hadn’t been up to 2017 when my father died). What has happened is that the drug regime can now be titrated to a much finer degree for each individual sufferer, and this fine control has a significant positive impact. A strict medication and exercise regime are key to keeping the symptoms at bay.

Not to be tacky, but is Parkinson's related to cocaine use or not?

My grandmother lived to almost 90 with it, she ended up dying of CHF. I think she had a milder form, it affects everyone different.