1) Today I found a marriage in which the man has been diagnosed PSP early, 7 months ago. He has taken our experience in gymnastics and speech therapy and applies it with intensity and rigor every day. It even overflows them in dedicated time.
2) A neighbor who suffers from a neurological disease that affects only the legs. It is a "rare" disease in the family of Amyotrophic Lateral Sclerosis. He was given a couple of years to live. In addition to his treatment he does swimming every day (2000 meters). Of this is 12 years ago.
3) I wonder if one of the primary research goal for PSP would be: early diagnosis and specific intensive gymnastics as soon as it is detected.
Written by
LuisRodicioRodicio
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When my son was DX with Parkinson's (PD), most research supported EXERCISE as a means to slow it's progress. PSP is DIFFERENT than PD, but among PRIME OF LIFE BRAIN DISEASES (PSP, CBD, MSA, FTD, ALS, CTE).
I think the research of exercise and its impact on the "prime of life brain diseases" would be fantastic, however the PHARMA companies are seeking medication solutions because those can be sold....rightfully so, since PHARMA is a BUSINESS not philanthropic endeavor.
My son, who died of PSP, when DX with PD continued his daily walk, until he became fearful with balance challenges.
Luis, when you say gymnastics what do you mean? Regular physical exercise with specific ones for balance and muscle strength? We recently took an online "energy medicine" class in which the instructor has several routines that emphasize the reinforcement of the normal neurological pathways crossing the brain hemispheres and controlling the opposite side of the body as well as following the energetic meridians of Chinese medicine/acupuncture. So far it has just been too much information to assimilate while trying to get a grip on what PSP is and how it is impacting our life already. I started listening to some of the lecture audio segments again while we are visiting our son and family in El Salvador. I wish I had tried to download the videos to the tablet too! It seems some of it is highly unlikely applicable to slowing this down if one is open to the idea.
Yes, it could be defined as: Regular physical exercise with specific ones for balance and muscle strength.
We follow a table of exercises designed by physiotherapists and speech therapists who intend to move the muscles related to locomotion, speech, sight, hands and arms every day.
Gymnastic tables.
- Passive in bed (all days): To move all major muscles and speech therapy exercises as well exercises for ocular muscles.
- Active (helped by 1 or 2 people):
(For a week ago we are trying to alternate the stairs and the walk to avoid an excess of fatigue).
Even days: Go up and down 50 steps.
Odd days: walk 200-300 m.
After passive or active gymnastics she needs to rest at least 30 ' .
The only treatment of any value is exercise. That said for people who’s onset is in the early 60’s or later with no history of physical activity it’s a very difficult things to do. Gymnastics would be very hard on an aged body. Much less demanding exercise is just as beneficial. Anything beats nothing to keep the muscles working.
Ruth is at the stage where she can still able to walk with a rollator. Her balance is really bad as expected. She is doing yoga a few times a week - specifically Iyengar yoga where the emphasis is on trying to get to a specific posture (with the muscles pulling in opposite directions) and holding the posture for a few seconds. I think it is very good for keeping the body flexible and ironing out some of the aches and pains. Also I think it helps to lessen the impact of her falls as she is more flexible (but not much good when she bangs her head on the bath - no damage done to head or bath fortunately!). She does the yoga by herself with a chair for balance if she is doing a standing posture. I arranged a one to one lesson with a teacher to get her started and the teacher then gave her a sheet showing 10 postures to do which she follows each time. Even if you had very limited mobility, you could do each posture to the best of your ability and hopefully over time you should improve. (Until the wretched disease comes up with its next twist of the knife!)
Anyway, I always try to spread the word on the benefit of yoga and do it myself.
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