Roy

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…[Read more]

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 s…[Read more]

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 t…[Read more]

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 c…[Read more]

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 F…[Read more]

Began my PD journey in SW Florida, USA. Recently relocated to Brevard, North Carolina, USA to be near my oldest son.

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 i…[Read more]

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…[Read more]

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…[Read more]

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.

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…[Read more]

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 thr…[Read more]

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…[Read more]

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 do…[Read more]

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…[Read more]

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…[Read more]

My hubby has also suffered with constipation issues. He has finally found a regiment that works for him, so I’ll share it in hopes it helps others. First, water is of utmost importance. We live in Florida, so staying hydrated is a must. Adding in the constipation issue just adds to the mix. Next, a piece of fruit with each meal, at least, per d…[Read more]

Roy’s first step toward a diagnosis of PD was twice fainting from Orthostatic Hypotension.  He worked at a home hardware store and had been experiencing lightheadedness and dizziness when he stood up and moved quickly at work, or when he bent over to pick up product from the floor. For years, he had been running a machine to place product on up…[Read more]

My hubby was diagnosed with PD in 2017. He was already retired, but I was still working as a teacher. My days would start at 6:50 and I did not return home until 4 or 5 o’clock, with paperwork to do in the evenings. In addition, I was caring for my elderly parents who were living in an Assisted Living facility. By January of 2019, both parents h…[Read more]