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Parkinson's disease ???


mlktwins
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Does anyone have experience with an elder with Parkinson's?  My dad's neuro was thinking possibly, but wasn't pushing to pursue testing???  Our caregiver has brought it up also (as a maybe).  I am making an appointment with a specialist to get him assessed and I'm wondering what to expect?  From reading the list of symptoms, I'm not sold on this diagnosis, but want to pursue it if means getting on some correct medication or treatment plan.  I don't know a lot about this disease.

 

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My great-uncle passed from this but I'm afraid I don't have a lot of advice, other than that if Parkinson's is suspected then you definitely don't want to wait for testing. Most of the treatments work better if you start them early in the disease process. Also, when they are doing the testing make sure they rule out Normal Pressure Hydrocephalus which can mimic the symptoms of Parkinson's but has a completely different treatment plan and outcome.

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My dad died of/with Parkinson's two years ago.  I was not heavily involved in his care, but if you have specific questions I might be able to help.

He had the disease for a long time (10+ years?) with only minor symptoms.  But, once the symptoms started getting worse the disease progressed rather quickly.

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11 minutes ago, eagleynne said:

My great-uncle passed from this but I'm afraid I don't have a lot of advice, other than that if Parkinson's is suspected then you definitely don't want to wait for testing. Most of the treatments work better if you start them early in the disease process. Also, when they are doing the testing make sure they rule out Normal Pressure Hydrocephalus which can mimic the symptoms of Parkinson's but has a completely different treatment plan and outcome.

Wow re: Normal Pressure Hydrocephalus.  I will definitely be asking about this.  He also has bladder control issues and we've been to the urologist many, many times!!!  Thank you!!!

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Yes. I watched it progress for years with my mother. We noticed something off around the time of Hurricane Katrina or thereabouts. Her balance/walking became odd. 
 

She was not given a diagnosis immediately though. We all had our suspicions on what it was. At one point I looked up Wilson’s disease as well. 
 

She passed away in Nov. 2020. At that point she’d had to move to a feeding tube for 1-2 years? She had started aspirating. She was not a candidate for surgery to fix it… for some reason food was not going down correctly. In addition, eating solids had become harder and harder prior to the tube. She kept feeding herself as long as she could. We sent her wide grip forks and spoons. She had another obstacle though… she had a bad fall and her thumb never healed correctly so she was limited to use of one hand basically. Using a walker was very limited. She should have probably been using something *before* the fall. She just kept trying to do too much. 
 

I lived with her during Katrina but moved out after we all got displaced. I visited several times a year and saw things progress. The last couple years she was basically bed ridden and had a hospital bed in her room. It was the best way to adjust her to be partly upright or whatever. She was too nervous or too proud to let her children help with certain things. I’ll tell you more in PM it you want more info. 
 

But all this happened over years. Yes, she did briefly try medication for it. She was diagnosed in her 60s I guess. 
 

If money is not an obstacle I’d look into those fancy utensils that adjust to tremors to help eliminate spills while the person eats. Although tremors can be random so may not necessarily happen at meal time. 

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I have a relative who had some issues that were being investigated a few years ago. During that investigative stage, I ended up bringing the relative to the doctor when the primary relative was out of town. 
 

The main doctor was out of town also, so the relative saw a new geriatrics doctor. He was convinced the relative had Parkinson’s. However, the relative insisted the main doctor felt it wasn’t that, and the new doctor was a bit pompous and dismissed the other doctor’s opinion . The doctor then went and read the relative’s MRI, which had been done sometime earlier but wasn’t in the record at this office.

He came back with a completely different tune and agreed it could be normal pressure hydrocephalus. My relative was then seen by a neurosurgeon who agreed with this diagnosis. The neurosurgeon put in a shunt soon after that and the relative no longer had any of the symptoms that led the doctor to suspect Parkinson’s. My relative is still doing great at age 81.

 

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My dad and my fil both died from Parkinson’s in the last 2 years.  One thing I learned is that it can be quite different in different people.  Fil had the classic tremor in his hand, but my dad never had that at all.  My dad had a lot of balance problems for years (including several bad falls), fil didn’t have that until a few months before he passed.  There were other differences, but those were the biggest.  Just realize that what one person’s experience may be very different from what your loved one may experience.  

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My mother was concerned about having Parkinson's. The doctor told her to hold her hands out in front of her with arms outstretched.  Because her hands didn't tremor when she did, the doctor ruled out Parkinson's.  I'm not sure of the science behind it, but you might try it and see.  Just because tremors continue whilst holding out your arms and hands, that doesn't necessarily mean Parkinson's is present.

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I have young onset PD, with onset of symptoms before age 50. 
PD is an umbrella term and every case is unique. Some cases start with neurological issues, while others start with digestive issues. Some people have tremors, some never do. 

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Definitely push for testing.

If Parkinson's is ruled out, another possibility is Lewy body dementia. 

You should be dealing as much as possible with geriatric specialists, and you should get a full neuropsych workup in addition to Parkinson's testing. 

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May be too painful to watch or may be comforting… but I watched Zoey's Extraordinary Playlist and her dad in the show was battling Parkinson’s. It was so relatable. He couldn’t communicate really so they were trying buttons for yes etc. My mom’s ability to talk was hindered so much. I couldn’t really talk to her on the phone and even in person barely. I am happy I got a few seconds of her on a recorded children’s book (my dad, too). We bought it at Hallmark. 
 

Edit: show not shoe lol 

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