Roy

<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 h…[Read more]

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…[Read more]

<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, Ro…[Read more]

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…[Read more]

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 ce…[Read more]

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 e…[Read more]

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…[Read more]

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 c…[Read more]

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]