Barbara Ernest
Forum Replies Created
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I lost my wife in July 2021. She had Parkinson’s disease for over two decades, but it was only in the last couple years that she had severe problems with falls and mobility issues. I told her to never go downstairs or upstairs by her selves without me with her With with me. One day she tried to go down while carrying something. She fell down the full flight of stairs, causing severe, physical injuries, and trauma to the head. She just didn’t want to let the disease control her life. She never complained about it although she had pains and other issues the worst part was in the effects of the disease in the last year or so.we have been married for nearly 60 years and I just miss her dearly.
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My wife worked in a banking job for a number of years after her diagnosis. Eventually, she was no longer able to keep up with the demands of her bosses. She tried even working extra hours without compensation. She eventually filed for disability undergoing independent medical examination and went before a disability judge who promptly granted her disability status.
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My wife Barbara had PD for over two decades before her passing due to a serious fall. The symptoms in her later years became increasingly noticeable especially in the last five years of her life. She had no tremors, but lost dexterity in her hands which was an unhappy event because she loved doing crafts. Most significant was the increase in loss of balance which caused numerous falls some more severe than others. She frequently would fall backwards into the bathtub and hitting her often with bleeding. She experienced voice changes and did take speech therapy. She also took physical therapy. Her mobility was mainly affected by the balance issues. I noticed that when she had something in her hands while walking she seemed to not focus on her walking. So I told her not to carry anything while walking. But one thing that really concerned me and I would like to hear some responses on it. Since we were both retired there was little time we were not together in the house, I bought some pendant push buttons that alerted me if outside or inside the house if she had a fall. Rarely, did she push the button after a fall and she was never incapacitated to the point that would have prevented it.
Visual and auditory hallucinations became more frequent in her last couple of years most often seeing and talking to our kids that were not present. -
Trying to keep them safe while allowing them freedom to do the things that make them happy.
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My wife had a lot of balance problems resulting in falls. Could not adjust to using a cane because anything in her hands caused her to lose focus on her feet.
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My wife has PD for over two decades. The last several years she experienced more frequent falls often serious. I was essentially her care taker the last couple years. Even though I told her never to go up or down stairs without me, she just didn’t want the disease to control her life. She never complained about having the disease. She fell down a flight of stairs with serious injuries she could not recover from.
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My wife could no longer tie her shoes and even some with Velcro straps were a struggle. I located some Kizik brand shoes she could slip into.
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My wife was prone to falls. Once I was away for 5 hours playing senior softball and found her when I returned after she had fallen off a step. So I immediately hired a care giver to watch her while I was gone. The categiver was excellent, did a number of household chores while making sure was safe.
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My wife had PD diagnosed when she was in her late 50’s. She passed away in July 2021 at 78. Over the last several years of her life she became more dependent on me-showering, dressing, house work. Her mobility, balance and speech were affected. She had numerous falls with fractured ribs and head injuries. But while she complained of aches and pains, she never complained of her affliction and tried the best she could to not let the disease control her life. She fell down a flight of stairs even though I told her never to go up or down stairs without my help. She suffered multiple serious injuries she was unable to recover from and passed away about a week after the fall.
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My wife had PD for over two decades and recently passed away from a fall. My wife enjoyed sex and intimacy until she passed away at age 78. But things did change over those PD years. Her mobility affected the types of intimacy she was capable of without getting into specifics. In fact, to my surprise about two months before her passing she out of the blue asked me if I was interested in some “playtime”. So her desire was still there. I think at that point I noticed the physical effects of the disease took over.
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My wife had Parkinson’s for over two decades but it was not until the past several years that the decline became more a drain on her quality of life. She never complained about her affliction. The falls became more frequent and some more severe than others. Her voice changed, she started losing dexterity in her hands, more balance issues. But she did not want the disease to defeat her. And in the end it did. She did not pass from the disease but a devastating fall down a flight of stairs trying to help out with a household chore. I never let her go up or down stairs without me helping her. But she was determined not to let the disease keep her fr0m doing activities that were a part of her life as a homemaker.
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As her husband and caregiver who infrequently left her by herself,I purchased some pendant alarm buttons that sent a signal to audible alarms in the house. But when she had a fall or more often slid off the bed when sitting while doing something, she would rarely think to use it and not because she was incapacitated. I searched the internet for a tilt type pendant that would provide a similar alert. I could not find anything.it was very frustrating since I could respond ,used it.
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Blood pressure variations during course of the day. Often very high first up in the morning before taking any PD meds. Sometimes after taking meds – so low that cannot even get a reading. Cardiologist said it is a very complicated issue not easily controlled. Overall average during course of the day is usually normal to low.Here is one example.
152/101 @7:53 take first med at least 1/2 hour before breakfast
64/47 @ 9:41am take meds about an hour after breakfast
80/49 @ 1:29pm about an hour after lunch
121/68 @ 7:31pm about an hour after dinner
average of four readings is 88/52
Anyone else with such experience.
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Tried it with no noticeable benefit.
I have more off days than off periods in a day.
My main side effects of my is blood pressure variations.
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Thanks for the reply. My daughter in law who I mentioned is a neurologist recommended not taking after 4pm as it might cause sleep issues. I take a combination of regular carbidopa-levadopa and the ER version 3 times a day plus two ER at bedtime. I recently read about the study recommending not taking my PD meds at meal time. So i take the dopatropic with my meds a half hour minimum before,breakfast and an hour after lunch. Have not tried in the evening. I take a 1/2 tsp in juice.
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I have systolic hypertension, after taking my PD meds in the morning I occasionally experience such a severe drop in blood pressure I cannot keep awake and need to lie down. It takes time for my blood pressure to return to “normal”. The drop in BP makes it difficult to walk and maintain balance which is a problem anyway. I have PD since the mid 90’s (now age 77. Hallucinations (visual and auditory) are another issue to contend with. Wondering if other PD patients experience such dramatic swings in BP.
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My wife who passed away at age 79 from a fall down a flight of stairs had diagnosed PD for over two decades. She started having frequent falls in the last five years of her life. She had no tremors, but her mobility, balance and dexterity worsened in her later years. Her changes in voice and visual hallucinations were obvious symptoms. To my knowledge no one on her side of the family had neurological issues, but the number of people is limited.