Gait Help?: Diagnosed Dec 2018. Been... - Parkinson's Movement

Parkinson's Movement
15,873 members14,894 posts

Gait Help?

Diagnosed Dec 2018. Been doing really good except my gait. On restore gold, b1, and 25/100 cl 3 Times a day. Also doing Coimbra Protocol. Almost completely suppressed all my symptoms except my gait. It’s not horrible but it’s a constant, annoying reminder. Any ideas?

46 Replies
oldestnewest

I do 60 to 90 minutes of vigorous hiking and rock scrambling daily. My gait is always improved afterward.

Another thing to consider is celery seed extract which has been helpful: healthunlocked.com/parkinso...

4 likes
Reply

I just had my annual physical yesterday at the VA. I had high vitamin D levels, so we talked about it. I assume you've read about vitamin D toxicity if the protocol calls for taking 40,000-300,000 IUs per day?

300,000 IUs sounds high to me.

"Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity."

mayoclinic.org/healthy-life...

Reply

Marc,

Yes, and you will run into other problems at those ultra high dosing levels, especially if you are not also taking the full compliment of vitamin d associated supplements with it. These would be an absorbable form of magnesium, vitamin A, boron / borax, vitamin K-1 & K-2, zinc, and calcium, but no calcium at ultra high dose vitamin d. Most senior men will get enough calcium from their diet, but under high vitamin d intake, calcium supplementing may be detrimental and even dairy products may be a problem when using ultra high dose vitamin D.

What is more important than the dose itself, will be your actual serum 25 OH (d) level. Taking 30,000 IU vitamin D per day can get some people up toward the upper end of the reference range of 30~100 ng/ml, but that same dose can put some people well above the reference range so having your 25 OH (d) level tested regularly is very important when using ultra high dose vitamin D. Generally, these type of doses are used when actually trying to treat a specific health condition.

Art

8 likes
Reply

Yes. D is tricky. Too little can be bad and too much can be bad. Once again, we are reminded of everything in moderation.

2 likes
Reply

I think with vitamin D, it is helpful to understand what the maximum dose is that a person could possibly get from the sun under ideal conditions for generation of vitamin D by the body. For a fair skinned person living near the equator, that might be in the 20,000 iu/day range. Going beyond that may be more than was ever intended for humans. On the other hand, a senior citizen who may spend more time indoors and will also have a reduced ability to produce vitamin d through interaction of UV rays with cholesterol in the skin because of reduced cholesterol in the skin, supplementing with vitamin d along with its known cofactors is likely needed and probably recommended by more doctors than ever before. Also, the time of year and location will play an important role in how much vitamin D the body will be able to produce. As long as your shadow at mid day under the sun is longer than you are tall, there will be insufficient vitamin D production in the skin. This would be most likely to occur in the winter months.

Art

Reply

Are you Art Easily?

1 like
Reply

Yes he is, YAY!! 🎊🎈🎉

1 like
Reply

Yay! Thanks Jenny!

1 like
Reply

Yes, I am easilly/Art, but I am posting with the icon, "chartist". I can not regain the icon easilly that I am aware of.

Art

Reply

Great you're back!

Reply

Hi Art, Dr Berg's D3 &k2 capsules are 10,000 IU D. Is this too high?

I am thinking of taking it every second or few day. According to my blood test with taking 1,000 IU per day is good. But since I have PD I thought taking more is better for the body's weak/shaky muscles?Thanks.

Reply

Here is a link to a comprehensive post I wrote about vitamin D as it might relate to PWPs and should answer most if not all questions you may have about this relationship :

healthunlocked.com/parkinso...

With vitamin D, it is not so much the dose that is important, but rather achieving the serum 25 OH (d) level that you want. The dose to achieve that level can vary very significantly from person to person, so having your doctor monitor your 25 OH (d) level to get to the correct serum level is the important part.

Art

1 like
Reply

Thanks Art.

1 like
Reply

Yikes these are crazy high numbers. I take ~7000 Iu daily and my vit D level is ~60 - right in the middle of the desired range.

Reply

I was taking a D and K combination which was 5000 IUs of D and that ended up being too much for me. Go figure.

Dr. Coimbra emphasizes his protocol needs to be followed under a doctor's supervision. I would think a mortician's supervision would be better.

4 likes
Reply

LOL!

1 like
Reply

Thanks for your concern. I am doing the protocol under the supervision of a doctor. I get me blood checked every 2 months. My grandfather, father, and I have had Parkinson’s. My only brother has Crohns. My mother had MS. Both me and my brother had DNA tests that said we are pre disposed to have low vitamin D. Modern medicine has failed my brother. His last option was stelara, doesn’t help. He hasn’t had a regular bowel movement in 2 years. After 1 month on the protocol he had about 1/2 normal with no other changes. He is feeling slightly better, which is awesome for him.It’s best for MS and Crohns, but hell what do I got to lose?

I’ve had low vitamin D sores since I was 18. They were always there but got smaller in the summer. From Utah, long winters. My doc said to go out in the sun more rather than any supplements. Seems strange that I got Parkinsons at such a young age? My parathyroid Hormone was out of sight high and my vitamin D was very low. 3 neurologist and Regular Doc said nothing about my D.

I have 2 young children, a wife, 38

And have life to live. Modern medicine has nothin but pills that make me sick. I am closely monitoring my blood, but I feel like I don’t have Parkinson’s lots of the time. (Other than Gait) I am being a Guinea pig, but I’m going to go with it. All my blood work has checked out so far, and I’m not a massive high doses. If it works for me, I will encourage it. I know it sounds crazy, but why is it the further away from the equator, the higher incidence and severity of autoimmune diseases? Around the equator, there are very few cases compared to the rest the world of autoimmune diseases. I know the danger in it, but I am monitoring it closely. Somethings working? Maybe it’s a placebo or maybe it’s not? I’m not waiting around to see?

1 like
Reply

Hi 38,

I wish you only the best and I'm glad the protocol is working for you and your brother.

Few things worse than intractable constipation. I'm sure he has tried all the standard home remedies.

True enough, much of the population in northern climes is deficient and have health issues because of it.

Would seem like you inherited your PD, which may be why you got it so young.

How do you and your Dr. use the blood tests to guard against toxicity?

Just out of curiosity, may I ask what dose are you and your brother are on now and how long of you been taking it?

Marc

Reply

Hello MBAnderson

I know it may sound crazy, this protocol but It made sense to me especially when it worked for my brother and my vitamin D sores. Since the advent of sunscreen use, the number of autoimmune diseases has also risen substantially. It is also I believe a product of our lifestyles as well. We spend a ton of time indoors, eat Fast Food constantly ( me especially) drink more soda ( me too) much more sedentary lifestyles. Exercise has been proven to slow progression which means would most likely help to protect against.

My genetics counselors told me that your genes load the gun, and life Experiences pull the trigger. It’s complicated but I’ve had very traumatic life altering events happened in my life the last 4 to 5 years. I think I would eventually have gotten Parkinson’s, but my lack of vitamin D supplements, life experiences and stress has made me get it at a much younger age. My dad and grandfather got it much older in life. They also had different lifestyles, less stress and such.

I truly believe the only way they can ever cure some of these life altering chronic Is fixing or altering our genes. Parkinson’s is so complex and many different diseases wrapped into one, I don’t believe it ever will be a cure all fixing.

If I continue to monitor my blood work, continue with the protocol, both b1 and the vitamin D, exercise, maybe I can slow down or possibly freeze progression. At least in the meantime, it leads to hope, which leads to a much better quality of life. Modern medicine says take this pill and hope for the best. Nothing slows it down.

Listening to you sort of made me feel like I was an idiot for trying. Maybe I am? But today it makes my life better? I would never recommend it to someone else because it might hurt me in the long term? But to me if there is a chance that it could work, it’s worth A try.

Modern medicine wants to fix you one way. With a patentable artificial Drug that they can make a fortune off. I can’t blame them, their objective is to make money. They haven’t found a cure, or in my opinion they are not close to a cure. People I tell think there has been a lot of progression in a cure. They have spent a lot of money trying which is great. If they had the cure today, it would probably take a decade before it came to market. A decade of progression. A decade of going downhill. I know today I am much better and feel like something is working. Sorry about the novel.

The objective of the Coimbra protocol is to lower your parathyroid hormone To the lowest possible range. The only way to do that is with vitamin D at high doses. They work as inverses Of each other. High D means lower parathyroid levels. It’s proven your parathyroid regulates your immune system. It has worked wonders with MS And Crohns. Modern medicine hasn’t? They want to treat you one way.

I currently take 84,000 I see’s of vitamin D. The starting dose is based upon your weight. My brother actually is on a much higher dose, because his Crohn’s actually causes diarrhea. And because he missing most of his bowel He absorbs very little. Even though he weighs 40 lbs less he is on a much higher dose.

Dr. Coimbra is no dummy. He was a large part of the human genome project that has been basically forgotten about or ignored. Smarter than you and me put together. He wants to help people. Doesn’t care about getting rich. It has to be done under a care Of a physician. Vitamin D can be toxic. I am well aware of that.

All things are poison, and nothing is without poison, the dosage alone makes it so a thing is not a poison.

Paracelsus

They continually check your blood and change your doses accordingly.

1 like
Reply

Never-ending trials generate jobs and $$! What is the rush for a cure?? :(

1 like
Reply

I noticed I wrote my novel, sorry but did not answer your question. In addition to the bloodwork, check your urine to make sure you’re passing a calcium. Bone scans are also part of it, especially in older patients. Also must drink a ton of water. It’s all part of the protocol. Can’t just take vitamin D and hope for the best. My doctor has made a supplement that includes all of the hinge also must drink a ton of water. It’s all part of the protocol. Can’t just take vitamin D and hope for the best. My doctor has made a supplement that includes all of the needed vitamins. Makes it pretty simple. I sure do miss Dairy products.

Reply

would you rather take vitamin D pills

or enjoy the benefits naturally from

proper suntanning?

outsideonline.com/2380751/s...

Reply

Usually suntanning will do enough. I’m genetically predisposed to have low vitamin D. I canBe outside all day And not get enough. Natural selection hasn’t weeded me out. I think that’s one of the reasons why we have more long-term chronic illness. Before people would just die .

Reply

The best results have come from Dr Joe Dispenza’s meditation which is based on quantum physics. It’s really the only thing during the past 5 years that has positively affected my gait.

There’s further info if you click on my avatar or just put his name in YouTube.

Good luck

Constance

Reply

Thanks man!!! I am going to try it!! I’ll let you know how it goes.... thanks again!

1 like
Reply

Hi 38tearoldmale. This is an 84yearoldmale with 56 years of Pd under his belt. I overcame that problem over 20 years ago when I found that ny walking was no longer being controlled properly by my subconscious brain. That is because Pd attacks the Glial cells in the substantia nigra. I found that I was able to consciously control my walking, as I did when I was small, before the subconscious took over .

Do a simple test:

1. Stand up, as straight as you can

2. Place all your weight onto your left foot

3. See how far you can stick your right leg out in front of you, while keeping your knee straight.

4 Then place all your weight onto your right foot and stick your left leg out as far as you can

5. With both feet on the ground, see how far you can stand up on your toes.

6. See how high you are able to sing your arms.

If you were able to stick your legs out further than you do when you walk and you are able to swing your arms up to shoulder height, then you will have shown yourself that you were CONSCIOUSLY ABLE TO WALK NORMALLY.

All you have to do now is to consciously move your arms and legs when you walk. I have been doing that since 1998 and have lived, medication-free since 2002.

If you would like to learn more, then visit my website - www,reverseparkinsons.net and contact me. It costs NOTHING!

Give it a try.

4 likes
Reply

Thanks John. I have read your book!! It was actually the first book I read after being diagnosed. You gave me hope when I had none. My only experience with Parkinson’s was very bad. It was helped for sure!! Thanks again John.... glad to see your still kicking!!!

Reply

Thanks Youngster!

Reply

John,

The more I thought about it, the more I realize how much your book meant to me. It’s the first Google search that comes up with reverse Parkinson’s. I have implemented lots of your tactics, that has led to A much higher quality of life. I’ve known people to give you a hard time, maybe saying you don’t have Parkinson’s or something. Giving people false hope? Thats horseshit! You gave me hope to find things that could help me when I was basically suicidal. Hope, even if it may be false is a hell of a lot better than the alternative. I’d like to meet you someday and shake your hand.

Thanks again my friend.

1 like
Reply

Hi 38yroldmale. Thanks mate, you give me the strength to carry on trying to help others, even though they think I'm a fraud. If there are any frauds here it is people with hidden agendas. I know that we all have the right to protect our own interests, even if it is that of selling drugs or providing medical treatments.

I have a strong belief in people's common sense. It is obvious when people have hidden agendas, or at least I think it is. But what have I GOT TO GAIN BY ANYBODY DOING FAST WALKING?

WHERE HAS ANYBODY SEEN ME SELLING SOMETHING, OTHER THAN MAYBE MY BOOK, FOR WHICH I GET VERY LITTLE. WHATEVER I GET IS SPENT ON KEEPING UP-TO-DATE ON PD NEWS AND WAYS TO REALLY HELP US ALL GET BETTER!

Reply

I've been waiting for you to speak up again, John. I'm participating in a gait trial at the VA. It's fascinating to see how my PD is responding to it. Gait is one of the most noticeable problems that I have. I go to the VA twice a week to walk for an hour o a treadmill. We started at 4 10 minute intervals with 5 min rest stops in between. They measure heart rate and ask me to quantify my exertion level for each segment. I started at 2.1 mph. The treadmill is flat. We did two weeks (4 sessions) like that, only increasing the mph up to 2. 5. Then we went to 3 15 minute sessions/two times per week, still recording the data and increasing the speed. The big deal is the focus on gait. Two or three people are watching me all the time, encouraging me to 1. take longer and longer steps. 2. strike with my heel first 3. lift my leg as I swing it forward 4. squeeze my shoulders down and together. Whenever I'm just a little bit off, I am corrected. The goal is that, after 10 weeks I will be able to go for one hour nonstop, monitoring myself. I return 6 weeks later to see if I have sustained the correct gait. A piece of the theory is that there is a genetic connection which is getting a neural stimulus from all of this.

Since I've been unable to ride my bike consistently, due to the knee and toe problems, this is taking its place. I forgot to mention that I got all the Neuro tests at the beginning and will get them again at the end. Unfortunately, two days ago I did something that injured my knee again, enough so that I'm not going this morning. Hopefully I'll be back on the treadmill by Tues.

So John, I think I need to read your book. Where do I get it?

Reply

Hi NanCyclist. You can look on Amazon. It has a pinkish cover with some redish flash. Is not the version with the blue cover, which was produced three years ago and was out of date. It is $17.95, I think.

Reply

My husband went from low vitamin d to about 300 just taking 1000 units per day for 6 months . Previously when he had been low in winter the dr gave him monthly 50000 tablets which made him very ill so he changed to the lower dose which still was too much.

Now he’s on on Hardy’s daily nutrients which has 1000 units 3x per day and he is at around 180 which is lower than on the lower dose which is odd. I wonder if being combined with other minerals and vitamins helps it stay in balance.

Reply

Freezing? Has your neuro discussed DBS surgery? Husband is going on 16 years with this in place. Had it implanted when he was 40 years young. Best thing he’s had in controlling freezing!

Reply

How is he overall, has DBS continued to help his other motor symptoms? Thanks 😊

Reply

Overall, he’s in pretty good shape for being pd diagnosed when he was 35. Though the dbs has helped with freezing, D is experiencing memory disorder. Doc put him on Xelon patch. Thankfully he is not having hallucinations!

Right now, he cannot multi-task. Example; D cannot be walking across a room and be distracted by something on tv. He will forget what he’s doing and fall. Refuses to use his walker.

He’s had to make a few “adjustments” to his life style. Sitting down to urinate. Will fall backwards if not sitting down.

But we take it one day at a time. Respite available when I need a break!

1 like
Reply

Glad to hear he’s doing pretty good all things considered and he’s blessed to have such a caring and supportive spouse!😊

Reply

I was diagnosed around August of 2018 at 38 years of age. A year later I've gone from barely being able to hobble around with a cane to being "almost" normal much of the time. Like you, my gait continues to be an issue. For most of the 1st year I've stayed on a relatively low level of C/L to see how much improvement I could get out of a clean diet, plenty of exercise, rest, and low stress. Recently I've been working with my MDS to tweak my C/L regimen. I slight increase in C/L over the past few weeks has had an enormous positive impact on my gait and general well being. So yes definitely see how much better you can get with supplements, exercise, etc., but my opinion is don't discount dopaminergic medication as part of your disease management strategy. BTW there are also some facebook groups dedicated to YOPD. If interested just search in facebook for "YOPD" and a couple will pop up. In addition to this site, it's another good way to see what others are doing and connect with other young onset parkies.

2 likes
Reply

I am on a couple of those Facebook groups.I have to be honest, lots of the people want to wallow in misery. Which ones are you on?

Reply

YOPD Parkinsons Support Group; YOPD DBS Support Forum; Parkinsons Online Chat Group; YOPD - DC (Washington DC Chapter). I just signed up for all of these and still deciding if I'm going to stay on them or not. Yes there is some wallowing but it seems like there are some interesting discussions too.

Reply

my husband was dx 1 year ago - we are trying b1, restore gold, vitamins also but we also have added mannitol. we have not added pharma drugs yet - been doing those for just a couple of months and no real change yet but not worse either. have you looked into mannitol as an additional supplement?

Reply

My gait and everything else drastically improved through high intensity exercises. The neurologist said it was rare that PD patients improve! However it happened. I train every day for almost an hour. Look at the boxing YouTube video on neurofitbc.com. Walking and biking is not good enough. All your muscles need attention and you for sure need to profusely sweat. I feel great afterwards. At first I could not do all exercises as I was supposed to, now I am much better at it. Doing it over 2 years. I miss only a couple days in a year.

Highly recommended and do not forget B1.

2 likes
Reply

Thanks, this has been very helpful!

Reply

PpVanruit....Do you take any supplements? What do you think about using an elliptical or BowFlex Max for the high intensity factor? I cannot use a treadmill due to my feet catching. I have major balance and gait issues when my Sinemet wears off. I think I am too off-balance to do boxing.

Reply

High

I am not a physio therapist. Find one specialized in PD. But if you ask me any high tensity exercises are good as long as you warm up first, do a variety of movements, keep going for an hour, do it every day, and do cool down exercises. (All on neurofitbc).

I take :

Lots of fish oil brand metagenics

CoQ10-200

Vitamin B1: Benfotiamine

DenBoer Neurosupport shake

Carpadopa Levadopa 100/25 3 times a day

My wife is encouraging my exercises! And now I am hooked! Try it for two weeks. God bless! Pieter

Reply

I've always found this helpful to get going in the morning when my gait won't cooperate:

Reply

You may also like...