It has only recently dawned on me that chronic fatigue may be a common symptom of most PwP and is not necessarily as a direct result of Parkinson's medication. If so, has anybody managed to improve their energy and would they tell us how they did it?
Is chronic fatigue always a symptom of Pa... - Cure Parkinson's
Is chronic fatigue always a symptom of Parkinson's, if so has anyone managed to reverse it?
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Norton1
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Hi Norton, I would love someway to combat this as well. I was taking B12 injections due to low levels, and it did seem to give a little boost. I find myself wanting to curl up on the floor at work and nap. However even when I have slept well for me(have REM sleep disorder).Im still wiped out most of the time. I do think chronic fatigue is a symptom for pwp, and comes with the rest of it. D
Hello dmerritt
Sorry to read that you have fatigue as well. Debilitating. For several years I was at my best for the first three hours in the morning. I would go for an early morning walk with some friends and their dogs. I could keep up with them until recently when my walking has deteriorated somewhat. I think that it was the case that my dopamine levels had built up overnight, but it seems not to be the case of late.
Still, fingers crossed, we may get some really helpful responses in due course.
Kind regards
Norton1
is your REM sleep disorder related to sleep apnea? It's more common in people with PD.
weight loss (45lbs) and exercise, yoga, exercise, yoga and more exercise and yoga. I'm 63 and have never felt better. Diagnosed 2-1/2 years ago. I'm taking requip (12mg), azilect and sinimet (25/100 1.5 pills 3x daily). No side affects.
Hello Nervous1
Thank you for responding with such a positive story. You mentioned exercise three times, but not what or how long you do it for each day. Weight loss is important also I'm sure to feel good.
Regards
Norton1
I go to an exercise class three times a week. Each class is 70 min. and mainly works on your core muscles. Abdominal. It also works on your muscles in general. It is an all around good work out.
The yoga is also 3 times a week (90min ea.) I can't say enough about yoga. Stretching, twisting, coordination, balance. It has it all. I also work out at home. Eliptical trainer, gardening, splitting firewood, mild weight lifting (dumbbells). Whatever I can find to do. I owe a huge debt of gratitude to my yoga teacher. When I told her I thought I had PD and that I was going to have to quit the class she refused to let me. When I was officially diagnosed and given medication my whole life changed and the rest is history. I feel like she saved my life. I believe that vigorous exercise is the key to slowing down the progression. Good luck.
Thank you Nerous1 for following up your original post on this thread with this one. You have sure given anyone who reads these posts an insight of what needs to be done if you want to maximise your potential even with PD. I feel that too many of us think that the solution to our problems lies in medications. I can see that everything that you do requires effort, same with John Pepper, whereas I'm basically lazy compared to you. I hope that despite your 'username' you can get out to Parkinson's group meetings to share your story. Thank you again for sharing your story.
Kind regards
Norton1
Hi Norton. As you already know, I have found that when I have to walk, I sometimes do not have the energy to get out and do it. But I have to force myself to start and within ten minutes, I am able to shake off the lethargy and finish the walk. Give it a go pal!
John
Thank you John for your encouragement as always. I have toyed with the idea of getting another dog, because they always need a walk, but I am aware of your caution of brisk walking only every other day. The solution might be to 'borrow' a neighbours dog for good company on the days I walk.
Regards
Norton1
Hi Norton. What could be nicer than having your own dog? Dogs serve a very useful purpose in our lives, their love is unshakable. You don't have to walk that fast with a dog.
Regards
John
I'll add one more good reason to keep a dog. My wife's love is conditional and she walks a lot faster than me. Only joking!
Regards
Norton1
we had an exceptionally long fall season, but winter came in like a lion.....then we had a thaw....and rain! on Christmas day, substantial rain that left a crust of ice on snow, but not before minus 40 cold with wind chill.....what do you think of stationary bikes?
My experience tells me that all exercise is good for our bodies, but a certain exercise causes the brain to produce growth factors like GDNF (Glial Derived Neurotrophic Factor), which means 'Repair or Building' and these growth factors repair the damaged brain cells and our symptoms get better. If we stop the exercise then the Pd still continues to damage more brain cells and we continue to get worse.
So, if we do FAST WALKING, regularly, 3 times a week, for 1 hour, we will stand a good chance of reversing the symptoms of our Pd and we will get better! We cannot cure Pd but we can manage the symptoms without depending on any medication, which does nothing to slow down or reverse the progression of Pd.
Don't expect to be able to walk fast for 1 hour right from day one. You have to slowly build up until you are able to do it for one hour. Strolling does nothing for the Pd, only walking at your maximum does the trick.
If you aren't able to even walk properly, it does not mean that you can't learn to walk properly by using your conscious brain to control the walking. I have been able to show hundreds, if not thousands of Pd patients how to walk properly and many of them have continued to do so and are now walking fast and getting better!
Not everybody is prepared to put in the effort to do the walking, but that is their choice!
I too have found no matter how lethargic you feel, the only way to combat it is to go do something fairly strenuous. walking, working, anything where you can use your muscle power.
I always used to hear my Mum say if she was not feeling well .
''We must work it off'' and she did. I think that is the answer to chronic fatigue.
JohnPepper• in reply to
Hi Norton and owdsod. There is no other way I know. Medication does nothing. If we have good reason to feel tired then have a rest. However! If there is no good reason to feel tired, then probably aren't and you should shake it off by knuckling down to do something physical, as owdsod has rightly said. DON'T GIVE IN, it maybe the last thing you do!
John
Always good to hear from you Owdsod. I know you are right as is John Pepper. When you get down to it, the fact is, it's all about determination in order to reap the reward.
Regards
Norton1
• in reply toNorton1
Hello Norton
It is not about reaping any reward, but about the determination to not be beaten.
This morning i could have gone right back to bed, instead I filled a bucket with Hot water and scrubbed three floors on Hands and knees.
I quite smile about it, as I often think of that bit in Jane Eyre where Mr Brocklehirst says ''Punish the body to save the soul''. It quite makes me smile, I can't say I am too bothered about the Soul, but if punishing the body takes away the lethargy then that is what I will do.
This afternoon I had a walk, and sat with a good book and relaxed. Life can still be good.
Take care.
Hello Norton,
I too am on Sinimet and Azilect, I find that by taking a good multi vitamin every morning I have a lot more energy during the day. As for a getting a dog maybe check to see if you have a local animal shelter nearby that you could help out at. We have senior citizens volunteer to help walk some of our dogs during the day where I work. Both benefit the dog gets a nice walk and the volunteer gets out and gets to exercise. In the afternoon you taking a little break or power nap might be what you need to recharge your batteries for the rest of the day.
Hello Mistydog1
Thank you for your suggestion re dog walking. As you can see the photo to the left is of a dog who we looked after for four years, who departed three years ago. He was a guide dog whose own died and we used to give him a free run, so we took him on. I took my username from him and am proud to have enjoyed his company for the time we knew him.
As for a dog rescue centre where we can go and walk dogs, the nearest is 17 miles away, which is rather far to go; however, we have two near neighbours who can not run their dogs for various reasons, so I will 'borrow' their dogs to accompany me.
Best wishes
Norton1
Hello everyone! I was diagnosed in September 2013 but I've probably had Parkinsons since 2011. I'm not on any PD meds yet but I exercise and take supplements. I find that when I take NADH 5mg and ubiquinol 100mg that I have more energy and it helps my back pain. Hope this helps! Cheers!
Hello Nourilo. I see that exercise is again coming up as a key factor in maintaining a reasonable level of health. Interestingly, you mention NADH as a supplement that you take. I have read about Professor Birkenmeyer who I think discovered it and had considerable success in treating Parkinson's patients using this nutrient. We don't read to much about NADH on this site, so if you have time, can you please explain in which way it has benefitted you?
Kind regards
Norton1
Yes, major symptom. I can remember as a teenager being fatigued. I'm 48 now. Just stay active even if it's only for a short time throughout the day
Thank you Ace1, as you imply, you have to motivate yourself to get active. Did you ever commence taking the Curcumin?
Regards
Norton1
No. I started MP instead.
Ace1. Thank you for getting back re the Mucuna Pruriens. I was taking the same for a long time. I also added a half a Sinemet tablet (25/100) to each dose. To be honest, I found it rather messy stuff to try and get down and not convenient to take when away from my house at dose times.
I don't want to put you to a lot of trouble, but if you would consider posting here or on another thread just how you manage your dose regime I'm sure it would be well received. Also, where you get your MP from.
Kind regards
Norton1
I buy MP powder from banyan botanical & pills from NOW. Prefer the powder but it is a pain away from home. Basically I supplement a half sinnemet with the MP. I would like to try Azilect butccan't now due to job which strictly regulates med. We can take.
Hello Norton,
My energy levels have significantly improved since I started on the ketogenic diet and coconut oil supplements. Believe it or not, but I am actually jogging my 5 km distance in 35 minutes these days compared to 50 minutes walking last year. I work up a pretty good sweat, but my breathing is not labored at all. Pretty amazing compared to the fact that I was barely able to walk (dragging my feet) a year ago.
Not bad for a 65 year old diagnosed with Parkinson's 14 years ago. My poor neurologist doesn't believe that I can even walk 5 km, and is really upset that I can sit in her office with no tremor.
Great to hear from you again Satwar. You deserve your improved health with all the effort you put in not only physically, but also mentally with your research. One thing though Satwar is that some people reading your post might conclude that this vast improvement means that you no longer need to take medication, but that is not the case so far as I recall.
Kind regards
Norton1
I've not required a change in medication for 4 years now and my symptoms have improved. I will not adjust my medication until my neurologist is on board. Right now she is far too hostile to be of help in this regard. I'm not aware of any unpleasant side effects from my medication, so have not felt an urgency to reduce them.
Thank you Satwar for expanding your earlier post. Far from being a little hostile to you, I would like to think that your neurologist would take a greater interest in you given your current state and medication history. I rather suspect that she is impressed with you but can not show it.
Regards
Norton1
Yes, it is very dangerous territory for both of us. My family doctor openly declared that he sees no progression of my disease. My neurologist can't say that, even though she acknowledges my reduction of symptoms. She still remembers how bad condition I was in a year ago. She certainly has the right to be skeptical, as I'm sure she hasn't seen anyone improve their symptoms.before.
Satwar.
Apart from describing your experience with the Ketogenic diet and exercise here, given more time, will you be writing of your improvement to a wider audience? My impression of your approach is that it is rather complicated and required a lot of dedication and possibly expense (coconut oil). I don't know if I am the only person who reads your posts who would like to read of your experience in a consolidated document.
Regards
Norton1
Hello Norton
you are not here referring to the chronic fatigue syndrome CFS also called ME are you, but to the general fatigue we often get with Parkinsons. I always feel better after a walk but I find this gets harder the longer i have PD and when my medication is wearing off. I can set out walking briskly but dont always return home that way! Every day is different.
Hi Norton,
The NADH was recommended to me by an MD who also practices alternatively i.e. acupuncture, supplements etc. I take a 5mg pill daily. I think it has relieved my fatigue and middle/upper back pain! I don't have a great deal of energy but I'm able to do much more than before and the nagging back pain has gone. I also take 100mg of ubiquinol...I hope this answer helps out.
Thank you for explaining the benefits you appear to have found in taking the nutrients Nourilo. You appear to have an enlightened MD.
As an aside I seem to recall that anybody on statins should consider taking Ubiquinol too.
As for the NADH, have you discussed with your MD about increasing your dosage to 10mg a day to see if it builds on the improvements seen so far?
Best wishes
Norton1
Also, I'm not yet on PD meds and I don't want to be! I saw my Neurologist last week and she found me improved since my last visit 4 months ago. Exercise is a big factor in my well being. I would like to hear from anyone else who has experience with NADH?
Nourilo.
You appear to be going in the right direction; long may your improvement continue. As for the exercise, it will be good in the future to hear what you are doing and if your energy level has gone up.
In respect of the NADH, you will not find much about it on this site, but please do not let that put you off. Have you seen Professor Birkenmeyer's short NADH video on Youtube?
Kind regards
Norton1
Drink lots of water and exercises such as tai chi , yoga , bike or just walk but most important breathe and stand as tall as possible it takes motivation , time and patience in 30 days you'll feel the difference . Good luck
Fatigue is very common in pwp.
Either through sleepless nights or the cocktail of drugs people take.
sleep, if you fall asleep easily, you're blessed. I wake up often enough, to pee, but I fall back asleep easily. all I am in need of is strength, not same thing as fatigue, although, if I exert myself with mostly frustration due to my clumsiness, I tire, and retreat to my tele.
is it fatigue or weakness? weakness is easily explained when you're dragging around a heavy weight of malfunctioning muscles. ever heard of the expression "dead weight"? a dead body is very heavy.
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