Forum Replies Created

  • suzanne-aloisio

    Member
    May 24, 2022 at 6:52 am in reply to: What’s your weirdest symptom?

    Patricia, I wonder if something like Liquid Hope would help? My husband used it when he was on a feeding tube, but some folks use this formula orally and say that it tastes good. It is completely plant based and very nutritious. You can google it or Functional Formularies, the company that makes it. I hope you find something that works for you.

  • suzanne-aloisio

    Member
    May 12, 2022 at 4:23 pm in reply to: What’s your weirdest symptom?

    My husband leans to the right, especially when he is tired or during off times, even running into the curb when we are walking. His neurologist said not to worry about it if he wasn’t showing signs of stroke. I Googled leaning and Parkinsons’ and discovered something called “Pisa Syndrome” associated with PD and other neurological disorders. But I got conflicting info: caused by PD meds or improved with PD meds. Has anyone else had this symptom?

  • suzanne-aloisio

    Member
    December 15, 2021 at 10:31 pm in reply to: Have your urinary patterns changed?

    I don’t understand why doctors don’t tell their patients about the external catheter that my husband uses. It has changed both of our lives. I used to have to strip the bed down to the mattress every day, even with using diapers and pads. Medications for urinary urgency and frequency had no effect. He used to stay home because the urgency and frequency were such a problem. He used to get up 4 0r 5 times per night. The device is called Men’s Liberty and it has truly liberated both of us. A bag attaches to the penis and is not visible. He can urinate anywhere and any time. He attaches a night bag and never has to get up at night. He can attach a leg bag to hold more urine for events like going to the opera. It doesn’t leak or cause irritation like a condom catheter can. Our insurance pays most of the cost or all of the cost when his deductible has been met. We found out about it from a friend who knew he had a problem. She read an ad in the newspaper. When I asked his gerontologist about it, she said she didn’t think it would work for him because of his retracted penis and recommended another external catheter that didn’t work at all. We decided to try the Men’s Liberty anyway and it has worked beautifully since the beginning, even though he’s 86 years old. Some men easily put it on themselves. I put it on for my husband each day. There was a learning curve in the beginning, but now it takes me about 2 minutes. I realize it may not work for everyone, but it works so well for my husband, even though he is not circumcised.   The company is very easy to get in touch with and will stay on the phone with you as you learn to put it on. (I have not needed their support.) There is a nurse on call for questions.  Just google Men’s Liberty and you can learn all about it. I wish there were a device like this that would work for women!  Please feel free to ask me or my husband, Charles, any questions about it. Wishing the best for all of you.

    Suzanne Aloisio, Loving wife of a person with PD