Falling : I don't fall because I don't do... - Cure Parkinson's

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Falling

kaypeeoh profile image

I don't fall because I don't do anything that might affect balance. I've had near-falls because of losing focus. Once in the garage while working on a motorbike it toppled over, dragging me down with it. I assumed I have near-falls because of muscle weakness.

Three years ago while jogging I had an inkling of a problem. I was on a dirt road with a steep slope. I'd been on the road for two hours. I kept tilting forward at the hips and wasn't able to stop and stand up straight. While jogging I tilted more and more and eventually fell. I had three falls before quitting. Luckily guys off-roading in a jeep stopped and gave me a ride home.

This " tilting forward" business is still with me and seems to be getting worse. These days I use a treadmill. For the first hour or so I do fine. Then I start tilting forward and have to grab the front bar or the side rails. Then I can continue. The treadmill is in a shed 20 yards from the house. When I'm done and walking back to the house I feel like I need hiking poles to keep myself upright.

Along with the tilting problem my lower back aches constantly. I used to take ibuprofen, 1000mg twice daily. I quit doing that after getting an ulcer. I don't know how this might relate to PD. I don't feel numbness. Just a chronic, nagging ache that gets worse with exercise.

I take Rytary 48mg three times daily. It doesn't seem to affect the lumbar muscle weakness. Could PD be the reason for these 'near-falls'?

Or maybe it's because I'll turn 65 next week?

TIA,

kpo

29 Replies

Hi KPO,

PD people tilt forward because their balance is affected and the body is trying to compensate for it.

Similarly being unable to judge sloping or uneven surfaces is also because of poor balance. It’s like the rudder is affected.

My husband had a problem judging uneven surfaces and I was always worried he wd fall so never left him alone. When I started him on the coronet Duo (4.5 weeks) and probiotics PS 128 (10 days) his balance became normal and he was not slow anymore. It was miraculous and I really thank God for it. All glory and praise to my Abba . 🙌

If you want to try it, start with the coronet duo as many people have experienced good results including Winnie the Pooh, jimcaster

Here is the link on PS 128

frontiersin.org/articles/10...

As I always believed solutions are always multifaceted I did both simultaneously. I tried Vielight gamma before and did not get such results. Certainly I will not be stopping either. Nothing ventured nothing gained.

Wishing you the same miraculous results. 🙏🏻

kaypeeoh profile image
kaypeeoh in reply to Millbrook

Thanks for the replies. I appreciate the input.

"PD people tilt forward because their balance is affected and the body is trying to compensate for it." I don't think that fits my case. I don't think I have a problem with balance. I can balance on one leg for 3 minutes. I think in my case it's muscle weakness. This article looked at PD improvement in surgical treatment of lumbar stenosis. Suggesting the problem may be neurologic and neuromuscular. And makes me think lifting weights and Yoga might help. I'm also planning to order the Vielight system.

journals.lww.com/jspinaldis...

kpo

rebtar profile image
rebtar in reply to kaypeeoh

Thanks. Good to know since I have spinal stenosis.

That's absolutely wonderful that the Coronet Duo and PS 128 have helped your husband so much that he's not slow anymore and his balance is normal. How long ago was his diagnoses?

He has not been diagnosed but he had the PD symptoms from 9 years ago. Firstly loss of sense of smell, stomach discomfort, coughing or choking on saliva, poor lane discipline when driving, frequent night urination, frozen face.

I started him on vit B1 in Feb 2019. He had some improvements but from last year his balance was not good and he drove very slowly. My dad had PD so I recognised the symptoms.

Within 4.5 weeks of using the coronet n 2 weeks of the probiotic PS 128 there was a drastic change. His balance and driving became normal. I never want to go back to those days. Now he can be left alone whereas previously I was afraid to leave him alone in case he fell. I do not know if it was the coronet duo or the PS 128 but I will be continuing both. So thankful to God.

interesting to hear about your results in contrast to the study....."However, PS128 supplementation did not indicate any significant impact on tremor, rigidity, PIGD subscores, or mHYS."

glad it worked.

Hi.

biospace.com/article/releas...

This study led me to start PS 128. The product has PS 128 +K21.

As I mentioned in my post I did it concurrently with Coronet Duo.

Just so thankful. - whatever works

the product you are using uses 2 different strains: PS 128 and K21. Why they added K21 to the mix I have no idea since the original study only used PS 128 at 60 billion/day.

what is the split? 50-50? they don't say.

to achieve the study's daily dose, you would need 2 sachets a day. are you using this amount/day? if not, just 1 sachet? $45/box of 30.

the Solace product is available only from Solace.

interesting that Bened did not specify whether any of these differences were statistically significant. probably because sample was too small.

He is using 2 sachets a day- 60 billion. It is to be taken at least 1 hour after food. Usually he takes it just before bedtime.

It is S$45 for box of 30 so 2 boxes for 1 month. Presently they have a promotion till end of this month 1 for 1 because they have stocks expiring December 2021. Now would be great time to try.

Wishing all PD friends here the same improvements. 🙏🏻

marnegro profile image
marnegro in reply to Millbrook

Hi Millbrook. Which one of the PS128 are you getting? the Active K21 plus PS128 or the MIND PS128? These are the options I found at the wellbeingsg.com site. Thanks!

Millbrook profile image
Millbrook in reply to marnegro

ACTIVE is the one for PD. That’s the one my husband takes- PS128+ K21.

marnegro profile image
marnegro in reply to Millbrook

Thanks for the info. What's the coronet duo and where do you get it?

Millbrook profile image
Millbrook in reply to marnegro

The coronet duo is a redlight device which he uses 2x a day and you can get it from wellred.com

wellred.com.au/the-coronet

It is designed by Australian doctor Catherine Hamilton and quite a few people on this forum are using it with good results

Juliegrace profile image
Juliegrace in reply to Millbrook

Has he been seen by a neurologist or MDS?

Millbrook profile image
Millbrook in reply to Juliegrace

He saw a neurologist when he had vertigo July 2020 and he had an MRI done to exclude a stroke. We brought up our concerns and this is what the neuro said - I cannot say that you will get PD or you will not get PD in the future. Just that one side seems to be slower. Acting out your dreams is another indicator. And that was it. Whatever it was he was not going to burden us with it till he needed medication.

When his balance got worse this year I thought it may be time to visit the neuro and start on medication.

But he is doing great now.

Is the PS128 product you purchase by Neurobiotique 30 x sticks?

No. The product is sold on wellbeingsg.com

It is produced in Taiwan and contains PS 128 and K21. The one for PD is multibiotics ACTIVE. The label is Activ health

The tilting forward is definitely a PD symptom. Maybe two hours on treadmill is too much. Possibly you are using up your store of dopamine resulting in more severe symptoms. And yes, PD is a likely reason for the near falls.

Yes, it's the PD (very probably).

"A tendency to bend or flex forward is the most common change in posture seen with Parkinson's disease"

I can balance with yoga but i would definately say PD has affected my balance. I can fall if i dont concentrate, if i perform 2 tasks at same time i ok but if i start thinkiing of third (e.g whats for dinner) its like my brain has overload n flicks off for minute resulting in falling ( more like a drop).

Perhaps it’s Festinated gait?It’s another wonderful PD attribute.

I also just topple over. Like my body just goes & there is no normal reaction to stop it.

Hope this may help

Be well

C!

You ask: could PD be the reason for these 'near-falls'? Yes, due to dystonia.

I have similar symptoms: during a long period of exercise (fast walking in my case) I lean further forward, and as this gets worse a backache develops. I also get a lean to the side (Pisa Syndrom).

I attack this on many levels:

- I make sure that I'm fully dosed. On a long walk I may need to stop part way through to take another dose.

- I some times use one walking pole.

- as both a first aid and as a partial preventative measure, I find that laying supine stretching my back helps.

- if I'm with someone, putting my arm over their shoulder to take a small part of my weight helps a lot.

Exercise burns up all my dopamine--after a while I can't sustain repetitive motion, which sounds similar to what happens to you on the treadmill. I envy the time you can exercise for. When first diagnosed 9-1/2 years ago, I walked 55 minutes on the treadmill. 40 minutes outside walk is about my limit now, although I can walk a brisk pace of about 15 minutes per mile.

I practice yoga and when my meds are working, my balance is excellent. But then again, 100% of my focus is on the balance pose. In the garden I frequently lose my balance, but I think all the yoga helps me adjust before I fall. I also work with a physical therapist who comes to my house 6 x month for wellness visits. I have lower back and hip pain, which she says is due to favoring one side of the body over the other and stooping forward, all which misalign the muscles. I'm a strong believer in PT and might suggest a few sessions where one could evaluate and give you exercises to adjust any imbalances.

To help your balance while you're standing, position your feet like a boxer. Feet should be kept shoulder width apart, then step forward one pace with the left foot. This shows a picture. Boxers use this stance to keep their balance.

wikihow.com/Get-in-a-Proper...

Yeah kpo you need to reread these comments and think again. For one, if you were a veterinarian, then you already know that dystonia and muscle weakness ARE neurological, because muscle strength is partly muscle tone, and muscle tone comes from muscle use, and muscle use happens or does not happen via neural signaling, and neural signaling is neurological. So muscle strength and muscle tone are neurological. Without neurological signaling, muscles can't keep up and they fade. Also there is a muscle weakness that progresses from aging. If I had power over what I can put in my body, I might try anabolic steroids and see if that couldn't help build up those muscles. But when you don't have enough dopamine in your body, you can't signal those muscles and those muscles for lack of signaling will not all work and because they will not all work they will not keep up their strength and they will decay over time. Also, you're talking about a complex systemic set of interactions, not one source.

So it seems to me the advice above is worth considering. Also, you may well have a stenotic situation with your lower muscle pain your lower back muscle pain that is. So I would seriously have that looked into because you may need to have some back surgery to correct that gradual fusing. If it is the case and a doctor will diagnose it so that you don't have to worry about whether it is or isn't, you will have some definitive help, then I might definitely consider the surgery in fact I think I would since otherwise you're going to keep walking.

Now here's something to consider also. I noticed that you are very stubborn guy. If I had to live in Connecticut I guess I might be also. You know there's this little story that some of my doctors have told me and it goes like this. Patient: "when I do this it hurts." Doctor: "So don't do that. That will be $300." If you can walk on your treadmill for an hour before it really hurts, as you did say above that you walk for an hour and you do fine, then get off the damn thing after an hour. Rest a bit. Then you can go back to it if you want.

Thanks again for all the replies. This morning I took Rytary then used the treadmill. After two hours the tilting problem was back. I took another Rytary and continued another two hours. But the Rytary had no effect. Now I'm back on the couch with acupuncture needles in my lower back.

Tomorrow I'm having surgery to excise a growth. . Depending on the number of sutures I may be back on the couch for a while.

K

I play basketball twice a week. I am considering missing the Saturday morning game once in awhile as it can be too much on my body. I appreciate your mindset, but common sense should tell you that 4 hours on the treadmill is too much, especially when you start to deteriorate after 2 hours. Exercise seems to be the best thing for PD so you don't want to turn it into a negative. Marion is right, get off the thing and go eat a banana or get a massage.

Eric

journals.lww.com/neurorepor...

Look for Psoas muscles, hip flexors and glutes muscles. In Parkinson’s these muscles tend to become tighter than other muscles and that makes you tilted forward. There are stretching tools and exercises to loosen up these muscles.

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