We have all been told that Parkinson’s Disease progressively gets worse. Yet, many of have had some symptoms (sense of smell, for example) improve. This might be overly simplistic wishful thinking, but doesn't it seem logical that if my sense of smell is improving there must be some underlying improvement in my brain?
Does Symptom Regression Equate to Disease... - Cure Parkinson's
Does Symptom Regression Equate to Disease Regression?
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jimcaster
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32 Replies
•
Anything is possible!
I tend to think of the interplay between PD progression and how we feel each day (symptoms) as a sine wave that is sloping down. So the trend is downward, but there a peaks and valleys within that trend that means sometimes you feel as well as you did 6 months or a year ago, and sometimes you feel dreadful.
Good point, Jim. My side-to-side tap test results are better now than 8 years ago. But, I think the improvement is due to training. My progression has been characterized by one symptom at a time being a problem, while others are unchanged for long periods. I don't know if this is a feature of my disease directly or a reflection of my coping strategy.
I don’t know but since 2012 my condition has progressively gotten better by a lot.
It seems like my sense of smell improved, too! However, for me, there has been progression in many other areas/symptoms, so that did not indicate disease regression! Hope is always possible, I suppose!
I have symptoms that have greatly decreased with lifestyle modifications. Others have increased but nothing too dramatic. I know now that I can improve my quality of life and have a positive impact on my long term trajectory with lifestyle.
lbrussell• in reply to
What a great way to look at things, cclemonade. What lifestyle modifications have you made that made the biggest difference?
This is just my guess not scientific.
I think the usual decline is due to a bit of a snowballing effect with symptoms leading to behavioural changes and pharmaceuticals, some of which cause additional symptoms. Eg being tired and apathetic leading to less activity, antidepressants that may have side effects etc. These changes might begin years maybe decades before symptoms.
It seems with better nutrition including supplements where there are deficiencies in nutrients, and exercise including stretching, strength work, and aerobic, improvements or at least halting of progression could be possible.
Whether the damage to the brain can be repaired, it seems some repair and renewing of brain cells is possible and my guess is that it may be an iterative snowballing effect in reverse if it can happen. But it would require enough determination and strength to everyday to battle against the decline especially as progress would be slow at first. For some it would become just too hard and other aging processes and diseases might also be sending it in the other direction.
But I do think that for someone in the early stages and younger onset cases it might be possible to slowly repair.
Other problems like genetic defects might make it harder to reverse. For example my husband appears to have multiple defects in the process that turns precursors into dopamine and seratonin. I can’t figure out how to support those pathways to maximise his ability to produce these neurotransmitters, or how he can survive on less of them than other people have. He must have for the first 50 years of his life. Removing as many stressors as possible and supplying enough precursors seems to be the only thing I can do to help. I can’t find any suggestions for natural remedies for this. I do know that drugs to increase these neurotransmitter over stimulated him and makes him agitated which to me indicates that it is causing more damage to his brain.
If the cause was just diet, bacteria, viruses, or chemicals etc for other people then taking away or treating the initial cause, then sticking strictly to healthy lifestyle choices seems more likely to work than if there is also genetic defects.
One common genetic defect is the mthfr gene of which hubby also has a double defect. This is a genetic mutation that may lead to high levels of homocysteine in the blood which is a marker of inflammation, and low levels of folate and other vitamins. It also means synthetic b vitamin supplements like folic acid and cyano cobalamin aren’t able to be processed. So supplements with natural forms of b vitamins are needed.
• in reply toLAJ12345
I have genetic Parkinson’s unfortunately. I am convinced that I therefore need to be extra diligent in my self care bc my Parkinson’s is more aggressive due to genetics. I did not know that I need natural forms of B vitamins.
I have been taking the wrong thing then. Can you please share what form or means of natural B vitamins your husband takes? And anything else I should know or do to counter the genetic component?
I’m 3rd generation PD.
LAJ12345• in reply to
This is the multi he takes with them in it. Check the label for the list hardynutritionals.com/produ...
Specifically compare the b12, folate (or folic acid), b6 , and b3 forms in yours and this one.
Ingredients
LAJ12345• in reply to
Do you have your raw data file with list of gene snps in it? If so you can search to see them.
Mthfr snps
LAJ12345• in reply to
Which PD gene do you have? See below for info on the GBA gene defect that can cause Gaucher’s disease. This seems to be able to be alleviated with ambroxol. But it only causes a % of PD cases so if you don’t have that defect but another perhaps ambroxol isn’t as effective??If you have the mthfr defect then getting the right forms of vitamins seems important and looking into methylation.
There are other defects too associated with PD.
My husband also has problems with his high dopamine beta hydroxylase activity. I think this is his main problem but he also has the mthfr and another one GSTP1 I105V which is a detox one for heavy metals.
.
Jim, this is the question I ask myself over and over. My husband's improvements, like yours, include: sense of smell, got most of it back. Also, his writing is almost back to what was before PD, actually a little bigger letters. His mood has improved and has started to converse more with me.
Blame it on: Mannitol? Red Light Therapy? Ambroxol? B1? Different supplements? Who knows and he/I don't care as long as there are continuous improvements. 
Great news. So is your husband a steady ambroxol consumer?
Yes, started a month ago. We've got ways to go. Will report in another month or so.
Husband had an appointment with his Vanderbilt MDS. The appointment lasted an hour and a half! He was thorough and ready to answer any questions I had.
Q: Would you prescribe any disease modifying or repurposed medication for PD?
A: There is none.
Q: All trials, at least most of them, are on mice. Any current trials on humans?
A: . . . He looked at his database, and while he was looking, I mentioned "Exenatide" and "Amboxol." He looked at me and said "Yes, I am aware of them." I then mentioned to him that my husband is on "Ambroxol." He said that although there was a small trial, he encouraged my husband to continue taking it as there is no harm in doing that.
His pull test was 1//2 step backwards. I mentioned to him that husband continues to take B1 and also told him that Dr. Costantini had passed away. He was very sorry.
He pushed for no drugs and asked my husband if he would like to increase his current C/L. Husband declined but asked Dr.'s opinion on MP dosage. Doctor said whatever you would like to take the ratio must be 4:1.
"Progression is typical for someone 4 years into PD, " he concluded. "However," he added, "make sure EXERCISE is your number one PRIORITY." "Nothing helps like a 30-min daily exercise."
He continued to impress me. He is a young, very smart MDS. However, he's transitioned to research! Our next appointment is in a year with another female MDS.
PS. I also mentioned PTT performed in Switzerland but was not aware of Dr. J. He didn't seem to support bilateral FUS.
Thank you so much!
"His pull test was 1//2 step backwards": Is that trending positive?
Also, I know one person on this forum is taking 600 mg of Ambroxol a day instead of 1200. Is your husband taking the 1200 mg dose?
Yes, the pull test with 1/2 a step backwards is very good. He is also on 600mg Ambroxol a day.
I will be happy to answer any other questions you have.
Thank you! So he is actually improving. That is great.
I do have a 10 pack of ambroxol. That would get me 15 days. I was thinking maybe using it quarterly (4 times a year). I could afford that. Just as a periodic cleanup (with no studies to support it).
Thanks, glad to hear what you all are doing is working.
Are you doing keto or paleo or any special diet?
Neither diet. We have been and still are on Mediterranean diet. I cook it daily!
• in reply toDespe
Hi Despe I’m in Ambroxol too. I feel like I need to whisper that.
I’m presently taking 900mg. I figure that is approximately equivalent to the 1050 mg in studies because I’m a small person.
I’m very glad to hear your husband is doing quite well and the experience with the doctor was a positive one.
May I ask how you time the Ambroxol?
I’m concerned about it killing the bacteria in probiotics and decreasing the absorption of supplements.
I used to take ACV first thing in the morning with the hope that the increased stomach acid will improve my supplement absorption.
Now that I’m taking Ambroxol, I’m confused about which first, Ambroxol or supplements and when to best fit in mannitol and fish oil.
I’ve become very high maintenance!
Despe• in reply to
Lots good questions. Before breakfast he takes his probiotics, B12, Biotin, and he uses mannitol in his Keto cereal with almond milk breakfast. After breakfast he takes all of his fat soluble supplements and his Ambroxol 300mg, and another 300mg after supper. He never took ACV, but I do.
Everyone who wants to stay healthy must become high maintenance, not just PWP.
On another note, Dr. Mischley recommended 7-10mg Melatonin to my husband. I read in another post that she doesn't recommend it. Based on her patients' observation with slow progression, she recommends the Mediterranean diet. This diet includes fruits, vegetables, and fish. There is a lot of good fiber, minerals, and vitamins in all fruits. I don't personally believe in Keto diet. Instead of taking Resveratrol Supplements, eat dark red grapes. No supplement can substitute the real thing!
• in reply toDespe
Thank you Despe! I didn’t know I can take the Ambroxol with fat soluble supplements. I need to figure that out (which ones.).
I’m concerned about killing the probiotics with Ambroxol or ACV or who knows what.
I’ve been squishing grapes and eating the skins for some resveratrol. And I add apple peels to cabbage sautéed in ghee.
I recently heard that almonds are inflammatory (oxalates). So I switched to macadamia milk. It’s not bad.
I’m no longer strict keto. my sugar got too low.
Researching methylation more is my next PD task.
Thank you Despe!
Despe• in reply to
That is the spirit! Keep it up. Happy 4th of July.
Is there a bigger tablet than the 30 mg. I bought some ambroxol but I’m not sure he will take 20 of them a day and they won’t last long!
I looked up ambroxol and it mentions gauchers disease which is a genetic disease. This is an interesting read.
medicoverhospitals.in/medic...
“How it works with ambroxol hydrochloride
Gaucher's disease is caused by GBA gene mutations that encode the enzyme glucocerebrosidase. In a specific compartment in the cell called the lysosome, this enzyme usually breaks down a complex lipid molecule called glucocerebroside. The mutation causes the enzyme that is newly synthesized to fold incorrectly. The enzyme is thus aimed at degradation by the cells' quality control mechanism, which prevents it from reaching its goal, the lysosomes.The glucocerebrosidase substrate, also accumulates in the lysosomes, causing symptoms such as swollen liver and spleen, bone pain and fragility, reduced red blood cell counts (anemia) and platelet counts (thrombocytopenia), and neuropathy.
Ambroxol hydrochloride is a small molecule which binds to and facilitates the proper folding of the enzyme glucocerebrosidase. It would promote the translocation to the lysosomes of glucocerebrosidase, where it will help in metabolizing glucocerebroside and relieve the disease's symptoms.”
https://www.snpedia.com/index.php/Gaucher%27s_disease
Here is a link in which we both commented:
healthunlocked.com/cure-par...
My sister sends me Ambroxol, capsules 75mg, slow release. Like your husband, I wouldn't trust that my husband would take that many capsules.
Like his Vanderbilt MDS told him "No, it won't hurt you."
• in reply toLAJ12345
Thank you for all this info! I’m rereading it and researching now.
snpedia.com/index.php/Gauch... 2017 publication studying the link between Gaucher disease mutations and Parkinson's disease speculated that Parkinson's may represent a comparatively benign neurologic manifestation of type 1 Gaucher disease, of later onset, while carriers of “severe” mutations (types 2- 4) do not live to develop parkinsonism due to their shorter life spans with other, more malignant neurologic features. These authors also point out in GBA mutation carriers, “severe” mutations have a higher risk of Parkinson's than “mild” mutations (OR: 2.2 [CI 1.5–3.1] vs 13.6 [CI 7.2–25.9]) as well as an earlier onset of symptoms (55.7 vs 57.9 years).10.1186/s40734-017-0054-2
Now I’ve got his 23and me gene file out and I’m searching those SNPs!
Seems a good idea to try ambroxol if I find any!
Ok, so he doesn’t have any of the risky SNPs for Gauchers. So I’m guessing it may not work but as we have a pack of 300 I will try next week.
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