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    • #17185
      Toni Shapiro

      I think I made a mistake as to how to bring up an issue on a topic.  I put it in my profile instead.  I just found this now so I will repeat what I put in my log because I don’t know if that goes into the public form or not.  Thank you for you patience.

      I have been having memory issues that scare me especially knowing that I can get hit with dementia or Alzheimers. I can’t find memory issues on the form.  I was standing on a well worn corner of my little town with my husband and although things did look familiar I didn’t know where I was.  It was a frightening feeling even though it only lasted a minute before I know where we were and where I was going.  When I was still driving I forgot how to start my car, I forgot how to use the tv remote, I forgot how to use my coffee machine that I had been using for 20 years.  I left a pizza in the over until it turned into ashes and a pot of sauce on the stove that burned down to nothing but a black crust on the bottom of the pan I had to throw out. I asked my husband if there were any birthday cards for me when he came up with the mail.  He gave me a weird look.  This was in September and my birthday is in July.  Of all the movement and inner issues I have this memory thing is the most frightening.

    • #17211
      Curtis Nelson

      I have to agree with you, this memory thing is the most frightening. My situation is minor, I go from the kitchen to the pantry and have to stop and think what it was I went there for, things like this through out the day. But I’m feeling your pain. Your not alone.

    • #17226
      Mike P

      Hi Toni-

      I’m not a doctor but I’d recommend touching base with your neurologist and express your concerns. They might want to run some tests (e.g. B12) and review your medications. I have learned that some PD medications have been known to have side effects like brain fog and memory issues. I wouldn’t recommend changing any medication without your doctor’s approval

      I’ve had side effects with every medication and had to decide if the pros outweigh the cons. Keep us posted!



    • #17228
      Toni Shapiro

      Hi Mike,  Thank you so much for your response.  It’s very helpful.  I have an appointment with my neurologist in January and plan to go over it with him then.  I wrote it all down so I don’t forget which in itself is kind of funny.  I like the meds I am on because I am in good spirits, feel very positive and happy and grateful for many things.  Must be the “dope” in the dopamine LOL!  Thanks again.

    • #17229
      Toni Shapiro

      Hi Curtis,  Thank you for your message.  I appreciate knowing it’s not just me althougj I wish no one else has to go through it. The good thing for me is that I might forget but usually it does come back to me after a minut or so.  Thank you again


    • #17234
      James Harvey

      Thanks for the heads-up.  One more thing to be watching for.  I do have momentary lapses, such as directions when going somewhere or the correct orientation of the key to the front door.

    • #17243
      Enid Day

      I have certainly noticed my brain changing lately. When I think of something I need to do I need to do it right then or it is gone. I also have the thing of forgetting what I came into the room for. It happens so often I’m actually getting used to it and just wait till it comes back around. I’ve always said I could probably deal with the physical aspect of PD if I can keep my wits about me. Unfortunately I’m not calling the shots.

    • #17240

      I’m sorry you are going through this, Mrs. Shapiro. I know it must be frightening. It frightens me even though I am not going through it.

      I am a caregiver for an elderly relative whose PD and PD-related dementia are both quite advanced. I try to stay abreast of news that might help him, and one such item is that Lion’s Mane mushroom seems to encourage regrowth and repair of (some types of, I guess) neural tissue. Reduced inflammation, too. Here is a 2017 study on Lion’s Mane, mice, and various neurodegenerative conditions,  and this article includes a link to another study.

      A web search will turn up a ton of links about it, to be filtered with the usual grain of salt. I particularly liked a discussion on YouTube between interviewer Joe Rogan and Paul Stamets, a mycologist whose work with and enthusiasm for fungi are so captivating that the newest Star Trek series named a character after him! And for basic info here is the entry for Lion’s Mane.

      There is no data available on how it interacts with the usual Parkinson’s meds, which is par for the course. I’ve ordered and received some — capsules for whatever relief might be possible for my uncle, much-cheaper bulk for my own preventative health — and am adding it to the pill box this week.

    • #17268
      Toni Shapiro

      Thank you Joel.  I will look at the studies.  I haven’t heard of Lions Mane so I appreciate you bringing this to my attention. The only thing I notice so far is that if I have constant good sleeps on my CPAP my memory is much better.  Thanks again


    • #17388

      I think, for those people with Parkinson’s that don’t have any symptoms of dementia, it is important that they try not to become overly worried that they will most certainly develop this.  The stats are somewhere between 50 and 80% of patients will have this issue – however, I am sure this figure is so unprecise as so many people with PD are advancing in years and the medical professional cannot accurately tell whether their dementia is strictly age-related or due to their illness.  It is difficult not to ‘expect’ the worst but, at the same time, it is likely mentally healthier to take and wait and see approach.

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