Forum Replies Created

  • My husband has low back pain-not on Parkinson meds yet, but I think it has a lot to do with the Parkinson posture which his PT has been working on with him. He has also gone through the BIG program for Parkinson’s which I think may be helping some. Unfortunately he got a lumbar disc herniation which isn’t helping. With this he has to be careful with certain back movements. He is learning about his limitations.

  • Susan Schlager

    Member
    January 31, 2024 at 9:56 am in reply to: Mucuna Pruriens

    I too would like to know more about Macuna Pruriens, especially the dosing.

  • Susan Schlager

    Member
    January 10, 2024 at 7:32 pm in reply to: Can exercise delay Parkinson’s progression?

    This isn’t related to this question, but I am wondering if anyone has heard of the BIG therapy program? i heard about it from a friend and asked my husband’s neurologist to write him a script. It is the best thing that has happened to him. The premise is to not let the Parkinson’s not limit your mobility. The therapist is retraining him to go beyond the Parkinson’s limitations. I am not sure why this isn’t the first thing every neurologist prescribes for the patient. It has given my husband control of his Parkinson’s rather than the Parkinson’s having control of him. Ask your doctor about it.

  • Susan Schlager

    Member
    April 27, 2023 at 9:10 pm in reply to: Do you struggle with urinary control?

    My husband has urinary urgency when he gets up to come to dinner, turns on the faucet to do dishes.  He always goes to the bathroom before we leave the house in fear of not making it to our destination.  I, the non Parkinson partner saw a physical therapist for pelvic floor disfunction.  It helped my urinary incontinence and urgency.  While I was seeing her she was taking a class on working with Parkinson patients with urinary issues.   I would check to see if you have a PT in your area who specializes with PD or better yet with pelvic floor dysfunction in Parkinson’s.

     

  • Susan Schlager

    Member
    February 21, 2023 at 8:57 pm in reply to: How Often Do You See Your Neurologist?

    The neurologist tells my husband to make an appt in a year.  His naturopath sees him every 3-6 months depending on how he is doing and which supplement he is taking.  She has been very helpful.  We feel very comfortable asking her questions.  She has been proactive with keeping my husbands symptoms under control, giving me books to read so I understand what is going on and doing acupuncture which has completely managed his rigidity at this point.  She has been able to keep him off of meds.  We are keeping in contact with the neurologist for when he needs medical treatment.

    • Susan Schlager

      Member
      July 4, 2023 at 4:59 pm in reply to: How Often Do You See Your Neurologist?

      Update

      I made an appt with a movement disorder neurologist who he saw a month ago.  She said he was doing amazingly well for having been diagnosed 3 years ago.  Tins hae slipped since then due to a herniated disc limiting exercise and a 3 week car trip.  She does want to see him in 6 months.  She is much more invested in his care than the reg neurologist.

  • Susan Schlager

    Member
    December 16, 2022 at 2:03 pm in reply to: What was your first symptom?

    My husbands first symptom as we look back was loss of smell about 10 years before he was diagnosed with PD. His dr said, “Oh, you are just getting older.” he has been seeing a naturopath for about 2 years who has put him on some homeopathics and nootropics and he now can smell some strong smells. A couple of years after he lost smell he started to develop ED and the dr through the little blue pill at him. It helped for a while but is useless now. This last symptom is hardest for him. He feels like a failure. I can’t convince him I love him just the same. Any men out there have any suggestions on how to help him feel okey about himself or ideas on what might make things work better?

  • Susan Schlager

    Member
    June 2, 2022 at 9:53 pm in reply to: Lyme disease and Parkinson’s symptoms

    Yes, I had heard that Lyme disease, the great mimicker, can manifest itself as Parkinson’s disease, MS, Alzheimer’s, etc,  My husband’s neurologist refused to entertain that thought, actually made me feel stupid for thinking is could be a possibility.  I would like to know what others have heard.

  • Susan Schlager

    Member
    March 31, 2022 at 10:19 pm in reply to: Should I start Levodopa right away?

    My husband has Parkinson’s and was diagnosed 2 years ago at 66. He has rt hand tremors and foot flop when running which he now maxes with 1-2 minutes of running. My experience as a nurse is that levadopa only works for so long so save it for when it is necessary for functioning. Sometimes the side effects in the future can be worse than your current tremors. He has seen a neurologist who just said to come back when it gets worse. I found out about a naturopath who has been very helpful. He has acupuncture every 2-3 weeks which has relaxed the right side stiffness he had been having. She has prescribed some supplements and homeopaths which have really helped him along with exercise at least 5x/week which help keep dopamine levels up. Living is more work with Parkinson’s but in my opinion I would definitely diligently exercise and see if that works before I would start levadopa.

  • Susan Schlager

    Member
    February 2, 2022 at 3:47 pm in reply to: Melotonin for stopping hand tremors

    I don’t know about hand tremors, but it sure helped my husband’s vivid physical dreams.  He was always so tired in the morning and had such physical, vivid dreams that I suggest he take 1 mg of melatonin.  It worked!  When he went to the neurologist, he said it would work because it effected REM portion sleep cycle.  ( I believe I got that correct.)  He eventually had to increase it to 3mg.  We found that 3 mg SR got him through the night without wild dreams.  The regular 3 mg helped but he still had mild sleep disturbances about 4AM.   He now wakes up ready to get up .  Not tired and dragging.  I also get a good nights sleep.  A win win situation.

     

  • Susan Schlager

    Member
    July 4, 2023 at 4:49 pm in reply to: Can exercise delay Parkinson’s progression?

    My husband developed a herniated disc shortly before we had planned a 3 week driving trip to CA.  The herniated disc  limited his activity before we left and much time in the care limited his activity on top of the disc issue during the trip.  He is now back to exercising but not to the same intensity as prior.  I have seen a definite decline in his condition.  My question:  will increased daily exercise return him to his prior condition with almost no tremors?

  • Susan Schlager

    Member
    December 19, 2022 at 2:56 pm in reply to: What was your first symptom?

    The sense of small started coming back after she started treating him.  I don’t know if it is the suppements she is giving him, the exercise he is doing or the acupuncture that she has him doing that is helping.

  • Susan Schlager

    Member
    August 11, 2022 at 9:22 pm in reply to: Are you able to sleep through the night?

    Troy,

    My husband had the problem of always being tired and having a hard time waking up  in the morning.  He then told me he had a hard time going to sleep.  He  wasn’t aware of physically acting out dreams until I would wake him to ask what was wrong.  He could tell me his dream and it fit his acting out.  I suggested he take a small dose of melatonin. He started with 1 mg and had amazing results. No more acting out dreams and more rested in the morning. It eventually became ineffective but he has stabilized at 3 mg for almost 2 years now.  His neurologist concurred that this is an effective treatment for Parkinson sleep issues.

     

  • Susan Schlager

    Member
    April 7, 2022 at 5:30 pm in reply to: Are you able to sleep through the night?

    Troy,

    I fully sympathize with the “vivid dreams” as we call them.  My husband had horrible active, vivid dreams 2 years before he was diagnosed with Parkinson’s.  He would grab me because I was falling off a cliff, swing at me because he was hitting a baseball etc.  He also was tired and never had energy, had problems falling asleep and getting back to sleep after going to the bathroom.  I finally suggested he try 1 mg of melatonin which made a huge difference.  He then had an appt with neurologist who said that was the best treatment for the problem because it effected the dream stage of sleep.  He also thought that was too low a dose to make much difference.  Eventually, the dreams came back and I increased the dose to 2 mg and finally to 3 mg.  He has maintained at this level for over a year.  Even on nights it gets missed the dreams aren’t as bad as they used to be.  He sleeps soundly at night and has energy all day long.  I even have more energy after being able to get a full nights sleep.

  • Susan Schlager

    Member
    March 31, 2022 at 10:38 pm in reply to: Should I start Levodopa right away?

    I recommend acupuncture for stiffness. It has been amazingly helpful for my husband. It may not work for everyone, but it won’t hurt anyone and there are no negative side effects. It is worth a trying every 2 week for 2 months.