royroberts
Forum Replies Created
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<p style=”text-align: left;”>A few years after Roy was diagnosed, we moved to NC where my husband’s son lives so we can be near him. However, we are living in a very large one-story home. I am not able to hear Roy if we are at opposite ends of the house, which is a concern. We have tried walkie-talkies, but he had a very difficult time working his. Also, keeping up with such a big home is getting to be too much for me.
We are currently looking at several communities in our small city that have homes for retirees. The smaller homes are built for aging in place. One story, floors very level, showers with little or no step, wide doorways that easily accommodate walkers or wheelchairs. The biggest problems are the cost and the higher interest rate. We’re hoping something comes available that we can afford.</p> -
Concerning frequent urination, I never know if it is normal aging prostate, too many liquids in the evening, or PD. Regardless, some nights I am up to urinate as often as every 30-45 minutes for 3-4 hours through the night. Occasionally, the same thing happens during the day, too. It makes me desire to stay very close to home.
I, also, deal with constipation issues and have had an impacted bowel twice. To keep me going, I eat 2-3 pieces of fruit per day, 2-4 prunes, limit my bread intake, and drink a cup of Smooth Move tea every other day, or more, if I feel I’m getting stopped up. Obviously, I drink multiple glasses of water daily, which helps alleviate constipation, but causes frequent urination! -
<p style=”text-align: left;”>My hubby, Roy says the best way to support him is by being patient and speaking kindly. I tend to repeat myself when I give a direction, sounding more irritated each time. “Honey, move your left foot, please.” “Roy, move your left foot here, honey.” “Roy, are you listening to me, move your left foot here!” “Dammit, Roy you’re going to fall over! Move that damn foot over here right now!” Meanwhile, the poor guy is frozen to the point he can’t even tell me he’s frozen and I’m getting irritated at him. When he is able to speak and move, hopefully before he keels over, he always starts by saying, “I’m not ignoring you on purpose. I was frozen. Please calm down.” He’s so sweet and I can be a witch. I am trying to say this to myself when I feel the anger rising:</p>
You have been given a challenge.
You choose the amount of effort to give.
You reap what you sow. -
My husband, Roy, has been using CBD oil from our chiropractors. They sell an oil produced by family members was on an organic farm.
We decided to try it to help with leg cramps in the morning and evening times. The first couple months really seemed to calm the cramps down significantly. The last month, however, has not been as effective. I hesitate increasing the dose, as a one month supply already costs $85.
we’re going to try it for one more bottle after this one is empty. If we don’t see results similar to the first couple months, he’ll probably stop the oil.
After reading other’s posts, I may change the times of day he gets the oil. -
My husband was diagnosed with Orthostatic Hypotension a few years before his diagnosis for PD in 2017. He takes his blood pressure at least a few times per day, more so on days when his BP is low. When it is low, we start with a tall glass of water to be sure he is hydrated. Then, he eats a bowl of potato chips, for the salt. Next, a glass of caffeinated cola. Those 3 things tend to trigger drowsiness, so he will nap. That usually cures the dizziness. This past month, he gave up his driver’s license, although he hasn’t actually driven in over two years.
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My husband was diagnosed in 2017 and the search for a mattress and sheets has been on-going and expensive.
Our first mattresses were Temperpedic, a firm for him and a softer version for me, Split King with adjustable bases. He hated his and I wasn’t thrilled either. Next was the Thevocalm for him and a different one for me that was to help with chronic back pain. The good thing was the height. The mattresses are only 7” high, so he was able to get in and out easier. But, the insides seemed to just give way after a couple years.
Then, we moved and didn’t want to pay to move the rarely utilized adjustable bases, so went back to a coil mattress that was very firm in a King size. To keep the lower bed, we went without box springs, instead put a 3/4” piece of plywood underneath. I will admit that the mattress on Roy’s side of the bed sags due to his getting into bed routine, which includes pushing down with his fists and scootching back so he can swing his legs up. We switch it around every few months in an attempt to keep the darned thing for longer than a year!
The one thing that does work pretty well for him are Cosy House sheets, an on-line store. We have both the Luxury 1500 and the bamboo. Both are slippery enough that with all cotton undies, he can usually move around independently. If he can’t, I get called upon to help him get comfy. Some nights, there isn’t anything that works, so he heads for his recliner and dozes to the flicker of 24/7 news.
I guess I feel a bit better knowing that it isn’t just us that are having this dilemma. Sleep is so important and PWP sure have many issues that make it elusive, at best and non-existent at worst. Most times, I think it is the Parkinson’s causing the problems, not the actual mattresses. Because every once in a while, we sleep the sleep of people not living with Parkinson’s. Those nights are heaven, though fleeting! -
Hi, I am Cheryl and my hubby, Roy was diagnosed in 2016. However, he, too, had many non-motor symptoms that were ignored for many years. We have been together close to 20 years and I believe he was suffering from early PD when I met him.
We just discovered that we have a local group that meets monthly and hope to get involved in that in April. I would very much appreciate being included in this group too. I need something to help me as we progress through this journey.thank you!
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My husband typically wears sneakers, but was unable to tie them. We tried Kizik, which were very expensive, and he kept falling over trying to step into them. Sitting down to slip them on wasn’t good either.
Next, we tried Velcro, which were really ugly and looked like sneakers for Herman Munster. They were also incredibly heavy, but were sturdy. They have been relegated for working in the garage and around the house.
For two years, he has worn a pair of Nikes that are very comfortable, but I have to tie them for him. He complained that the laces were rounded and hard to manipulate. I couldn’t figure out what his problem was! So, they were workable, but kind of a pain.
Then, last week, a doctor recommended he get new sneakers as the treads were getting smooth, which isn’t very safe. He chose a pair of Sketchers and while I was fussing with the papers inside the box, he put them on and TIED the laces. We were both floored! He said, “I like these laces! They’re flat!” I haven’t had to tie his laces since!
Parkinson’s Disease never stops surprising us. If you can’t tie your shoes, try different laces! It may work for you too! -
For quite a while, I ignored the fact that I had Caregiver Fatigue. Not only was I working full time as a teacher and helping my husband with his newly diagnosed PD, I was also caring for my elderly parents. My dad passed away at age 94 and my mom a few years later at 96. I knew Roy’s difficulty with his PD symptoms were increasing and I planned to retire in June. However, the day I returned to work after handling the aftermath of my mom’s passing, Roy ended up in the hospital. I absolutely hated calling in for a substitute again! My school’s principal was so wonderful and had her secretary gently suggest that I retire 5 months earlier than I had planned. That night, alone in my home, I cried for hours. To leave my students and the other teachers in my department was not something I would have even considered. But, my principal, my friend could see something that I couldn’t recognize – and that was Caregiver’s Fatigue. I decided that I needed to retire earlier than planned for myself, an unusual response for me.
That allowed me to see that I needed to take care of myself more so that I can be good for Roy. For a whole month, I slept between 12-14 hours.
Now, when I am exhausted, I sleep! What a concept! Just stop doing and go to bed. I’m honest with Roy and let him know that he can wake me up if he needs me, but most times, he lets me be. He loves me and knows that I have to be rested to be a good caregiver. Plus, I am grumpy and can easily fly off the handle when I’m not rested. And no one wants me to get angry. Not a pretty sight!
The other thing I do to combat Caregiver Fatigue is to lower my household cleanliness standard, for short periods. Earth will continue to spin even if my house isn’t perfectly organized and spotless. If I need a few minutes to just chill or to take and extra long walk with the dog, I do it and let the chores wait. -
I take 800 units of Magnesium and 99mg of Potassium daily to help with leg cramps. My doctor also prescribed Gabapentin and recommended I take it before the cramps begin. Generally, my leg cramps begin about 8pm every evening. If the legs start to cramp late at night or very early morning, I take an Extra Strength Tylenol. The cramps haven’t completely disappeared, but have decreased in frequency. I am waiting right now for a delivery of Extended Release Magnesium to try out. I’m hoping it will eliminate all leg cramps.
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This is Roy’s wife, his caregiver. Roy was diagnosed in early 2017, although we had been working with a team of doctors since 2015. I retired in February, 2019 to assist him with his daily living tasks. Our days vary, some days are great and others are exhausting. I have seen some deterioration lately, so we are seeing the neurologist on Friday.
In general, Roy on a good day walks, independently bathes/dresses, and is independent with quiet-day activities. He may even walk and feed the dog. Other days, he needs help with almost everything he does during the day.
Roy is no longer able to manipulate buttons, snaps, and longer zippers(jacket). He can’t tie his sneakers any longer. He has difficulty with using any knives except butter knives or spreaders. He is easily confused with the microwave, his flip cell phone, and the TV remote. I administer and order all medications and schedule/accompany him to doctors. Roy no longer drives and it isn’t safe for him to be left alone on days when his blood pressure is very low.
My days and nights are caregiver, chef, cleaning lady and laundress. Keeping his bathroom clean and washing soiled clothes are daily tasks that must be done for sanitary reasons.
Lately, he has been experiencing falls, usually due to low blood pressure, which makes him very loose, moving as though he is under the influence of copious amounts of alcohol. His common sense for his safety is sometimes compromised. When I leave him on his own for short periods to run errands, I worry about his safety. I try to bring him with me as much as possible, so I can keep an eye on him.
He cycles through periods of insomnia due to restless legs. Then, his days and nights are flipped. These are very hard for me, as I have always required regular sleep. Last night, Roy woke me up every hour to help him get safely to the bathroom. He finally fell asleep at 5 AM and the dog had me up at 8:30. I am truly exhausted 5/7 days per week.
I can’t imagine how things will be when he isn’t ambulatory. The future scares me and terrifies my sweet guy. He knows things have gotten difficult for me, as they have for him, this past year. He asks me if I’m going to leave him. This happened to a neighbor that had PD. I reassure him that I’m in it for better and for worse, that I despise PD but love and adore him, and that where I go he goes with me. I pray daily, at least, that I be given the strength to follow through on those reassurances.
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Began my PD journey in SW Florida, USA. Recently relocated to Brevard, North Carolina, USA to be near my oldest son.
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My husband depends on our dog, Louie, a miniature schnauzer to keep him company when he is up and down through the night. As Roy wanders in and out of the bedroom, Louie’s eyes follow him. When he is ready to go back to bed, his dog is waiting for him and cuddles up close. When Roy is anxious, petting Louie calms him down. PD keeps Roy pretty isolated, but he always has his best buddy a step or two away. Louie is an elderly boy and it will be a very sad day when we lose him. Roy will never be ready for that day, but we’ll be getting another dog to take over Louie’s job of being there to love Roy at all times. He is the best boy!
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My husband has leg cramps at night also. He takes one Gabapentin at 6:15 and a second one at 9:00 which helps a bit. He also takes Magnesium and Potassium in an attempt to eliminate the cramps. His tend to start around 8:00 at night. Some nights, riding his exercise bike or taking a slow walk on his treadmill helps. Other nights, he stands for hours watching TV. He must have weight on his legs or they immediately cramp up. It is very frustrating.
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My husband often has a freezing episode when he is standing in front of the toilet trying to back up and turn to exit the bathroom. He makes sure that he is standing upright, begins swaying side to side, then stepping left, then right, forward, then backward, until he is able to turn around and walk. It took many nights to find the combination of movements that worked to unfreeze his body.
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I have had nightmares similar to your dad’s for many years, way before I knew I had PD. Therefore, I do not believe they are caused by medication.
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Most of our adjustments have been an attempt to make life easier for me. We added a portable bidet and grab bars to the toilet in the master bedroom. If you have trouble with keeping your hiney clean due to limited mobility, the bidet is a Godsend. We had put in a low threshold shower with grab bars several years ago when my mother-in-law lived with us, so that wasn’t a problem. Our home was already elderly safe from her stay, so we left it pretty much the same. To make it easier for me to get out of my living room chair, we purchased an electric chair that opens up completely so that I can sleep in it, if that is more comfortable. The last item we changed was a “Parkinson’s” mattress, a ThevoCalm, which we learned about on the site. The stairs up to our front door has railings on both sides. But, there aren’t any on the side door. We need to address that soon, as I have felt it is currently an unsafe stairway for me.
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I have had very vivid dreams for many years, even before my diagnosis of PD. What I have had in the past year is equally vivid, but I also don’t recognize my own home. For example, last night I dreamt that a bald man had set my legs on fire. I jumped out of bed when normally I need my wife’s assistance to get out of bed safely. But, in the throes of the dream, I moved without problem. Once up, I started looking for a bathroom. I even walked through the door to my master bathroom, but didn’t see it as my bathroom. Once my wife walked me to the bathroom and turned on a light, I knew where I was. She did have to have me examine my legs for lack of burns before I would believe that the bald man scenario was not real. So, is that a vivid dream, a hallucination, or too much medicine? I don’t know, but it is scary for both my wife and me.
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I believe that exposure to chemicals has caused me to develop PD. I worked on a Navy ship in dry cleaning during the Vietnam War. After that, I worked in a wastewater treatment plant, a R&D lab for insecticides, worked at and then had a lawn service that included insecticide/herbicide spraying, and worked for about 20 years in the Inside Garden departments at 2 large Home Improvement stores. I was tested for heavy metals and other toxins when going through my diagnostic period by a super neurologist at the VA. She was sure after seeing the results that chemical exposure was the cause. I know of no one in my family tree that had PD. I pray it isn’t genetic, because I don’t want my kids to have PD.
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My husband, Roy, saw a general surgeon at the VA in 2014 for a cyst removal. He was he first person to ask Roy if he had PD. His PCP recommended he see a neurologist, but before an appointment could be scheduled, he was diagnosed with cancer. That became primary, so he didn’t see the neurologist until late in 2015. However, like Ingrid, we had done some research and his kids and I were sure he had PD. We saw that he had so many symptoms that we just thought were weird little things about him. We now know they are PD and he has had symptoms since his late 50’s. Therefore, the diagnosis was expected.
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My husband, Roy has many freezing episodes also. They seem to occur most when he is giving a demand to move. He still has automaticity for walking after standing up. But, if he needs to step back from the toilet, frozen. Place a drill bit into the screw head, frozen. Lift his foot to get into or out of the car, frozen. Beside using time to begin movement again, he tries to stamp his feet, rock left to right, or lean backward, hoping and praying that his body wakes up before he falls. The last way scares me to death, so I usually get up with him every time he uses the bathroom at night. Which is a lot! But, I don’t want him to fall. He hates waking me up multiple times per night, but that is why I retired. So, I can sleep though the day, if need be. His worst times are from 2AM to 7AM, when he needs to turn around or get in/out of the car, and when he is using tools. If there is any positive about Roy having PD, it is that I have become much more familiar with tools and now know why he was always “ talking” to the tool in his hand. Now, he says, “Come ON, Roy! You’ve done this a million times!” He finds the freezing very frustrating. It breaks my heart.
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The hardest part of caregiving for me is interrupted sleep. My husband gets many episodes of frozen legs through the night. Each time he needs to get up to use the bathroom, he has to wake me up to help him get out of bed and walk safely to and from the bathroom. He often needs help manipulating his urine bottle because he needs to hold on to toilet rails so he doesn’t fall. Getting back into bed often takes 4 or 5 tries before he is lying comfortably. If we get 4 hours of uninterrupted sleep, we feel very lucky. I haven’t been this tired since I was a new mother almost 30 years ago. With an infant, you know that interrupted sleep is short-term. Being the caregiver of a spouse with PD isn’t a short-term situation. Today may be the best day, even if it feels like we are slogging through the mud of exhaustion.
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My hubby was diagnosed with Orthostatic Hypotension for about 18 months before we began looking at Parkinson’s Disease. He takes Propanalol to keep the blood pressure stabilized. If his BP is very low, he drinks a large glass of water, waits 30 minutes and checks it to see if it was dehydration. If it remains low, he drinks a cola and eats a cereal bowl sized bowl of potato chips. Again, he waits 30 minutes before checking the BP. If it is still low, he takes a Lisinopril. Sometimes, it takes 3-4 hours before his BP stabilizes. If his BP is super high, a tall glass of water and a nap fixes it. Meanwhile, he walks around like he’s under the influence!
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Hi, Jo,
My hubby, Roy struggled with constipation, too. We actually ended up in the ER once due to it. Our nurse made a recommendation for a tea found in grocery stores called Smooth Move. There are a couple different flavors to choose from. It’s important to allow the tea to steep for 10-15 minutes, or even more. To begin, he drank it every evening, but now, he just uses it 2-3 times per week. In addition, he eats at least 2 pieces of fresh fruit per day. We hope this might help you, if you haven’t yet tried this regimen. Good luck.