Forum Replies Created

  • Hugh McCrackin

    Member
    December 5, 2023 at 2:51 pm in reply to: Do you still have your driver’s license?

    Recently renewed my drivers license for the last time. Partly to get the Federal “Real ID” so I can use it for air travel. Also kept my motorcycle endorsement for nostalgia. I have stopped driving on interstates some years ago. I only make occasional trips in town. Starting to have eye problems (occasional double vision) which will likely stop me completely soon. My car (Subaru) does have automatic emergency brakes (AEB) which gives me some welcome extra piece of mind.

  • Hugh McCrackin

    Member
    November 9, 2023 at 3:38 pm in reply to: Stem cell therapy

    Hi, There is a type of “stem cell” therapy that is showing promise in clinical trials, that is growing new brain motor neurons from stem cells to replace those lost from Parkinson’s. I there are groups working on this in the US, England/Sweden, and Japan.

    The trial that I am part of can be found here:

    https://clinicaltrials.gov/study/NCT04802733

    https://www.biospace.com/article/bayer-s-bluerock-reports-positive-early-data-for-parkinson-s-stem-cell-therapy-/

    Phase 2 trials will probable start recruiting next year.

  • Hugh McCrackin

    Member
    October 24, 2023 at 2:44 pm in reply to: What kind of footwear do you prefer?

    I will admit it – I love my Crocs!

    They’re ugly but so easy to put on and odd and also very comfortable. I use them when I need to take the dog out and when I want to go on a 3 mile walk. I mostly wear without socks but may change my mind when it starts to get colder outside.

  • I found a list of non-motor symptoms:
    Dribbling of saliva during the daytime
    Loss or change in your ability to taste or smell
    Difficulty swallowing food or drink or problems with choking
    Vomiting or feelings of sickness (nausea)
    Constipation (less than 3 bowel movements a week) or having to strain to pass a stool (faeces)
    Bowel (fecal) incontinence
    Feeling that your bowel emptying is incomplete after having been to the toilet
    A sense of urgency to pass urine makes you rush to the toilet
    Getting up regularly at night to pass urine
    Unexplained pains (not due to known conditions such as arthritis)
    Unexplained change in weight (not due to change in diet)
    Problems remembering things that have happened recently or forgetting to do things
    Loss of interest in what is happening around you or doing things
    Seeing or hearing things that you know or are told are not there
    Difficulty concentrating or staying focussed
    Feeling sad, ‘low’ or ‘blue’
    Feeling anxious, frightened or panicky
    Feeling less interested in sex or more interested in sex
    Finding it difficult to have sex when you try
    Feeling light headed, dizzy or weak standing from sitting or lying
    Falling
    Finding it difficult to stay awake during activities such as working, driving or eating
    Difficulty getting to sleep at night or staying asleep at night
    Intense, vivid dreams or frightening dreams
    Talking or moving about in your sleep as if you are ‘acting’ out a dream
    Unpleasant sensations in your legs at night or while resting, and a feeling that you need to move
    Swelling of your legs
    Excessive sweating
    Double vision
    Believing things are happening to you that other people say are not true
    Dribbling of saliva during the nighttime

    From this list of 31 items I have these:
    Loss or change in your ability to taste or smell
    Constipation (less than 3 bowel movements a week) or having to strain to pass a stool (faeces)
    Feeling that your bowel emptying is incomplete after having been to the toilet
    A sense of urgency to pass urine makes you rush to the toilet
    Getting up regularly at night to pass urine
    Unexplained pains (not due to known conditions such as arthritis)
    Loss of interest in what is happening around you or doing things
    Feeling less interested in sex or more interested in sex
    Finding it difficult to have sex when you try
    Finding it difficult to stay awake during activities such as working, driving or eating
    Difficulty getting to sleep at night or staying asleep at night
    Intense, vivid dreams or frightening dreams
    Talking or moving about in your sleep as if you are ‘acting’ out a dream
    Double vision
    Dribbling of saliva during the nighttime

    Plus the motor symptoms:
    Masking – no expression
    Small handwriting
    Soft speech
    Slow movement and walking – Bradykinesia
    Stooped posture
    Freezing (during off periods)
    Poor balance
    Some tremor in hands when tired

  • Hugh McCrackin

    Member
    September 20, 2022 at 2:54 pm in reply to: Long term Levodopa use

    Hi, I noticed that, like myself, you are making the assumption that using Levodopa causes the eventual decrease in effectiveness. I am not an expert but I would suggest you ask your doctor. I have seen some research that suggests the loss of dopamine neurons both reduces the production of dopamine and the ability to process dopamine. If this is the case then the reduced ability to process externally supplied dopamine would happen whether or not you took the meds. Then options like DBS become more appealing.
    My point is just to be careful that you don’t under medicate for no benefit.

  • Hugh McCrackin

    Member
    December 23, 2021 at 4:17 pm in reply to: Do all exercises help with the Parkinson’s progression?

    Hi,

    I walk/stair climb, do yoga, and occasionally strength train and even a little martial arts forms practice. For me yoga helps with posture, flexibility and balance while higher intensity exercises (when I can manage) help with strength and cardio fitness. I think anything that keeps you moving helps.

    Regards

  • Hugh McCrackin

    Member
    December 21, 2021 at 4:07 pm in reply to: Light therapy

    Hi, there are several types of light therapy. I currently am trying NIR (near infra red). Found this on some websites from Tasmania. Followed instructions and build myself an led nir hat. Wear it 30 minutes + daily while I check emails. Not sure if it helps my Parkinson’s but seems to reduce the gray hair 🙂

    best wishes Hugh

  • Hugh McCrackin

    Member
    December 21, 2021 at 4:07 pm in reply to: Light therapy

    Hi, there are several types of light therapy. I currently am trying NIR (near infra red). Found this on some websites from Tasmania. Followed instructions and build myself an led nir hat. Wear it 30 minutes + daily while I check emails. Not sure if it helps my Parkinson’s but seems to reduce the gray hair 🙂

    best wishes Hugh