I am writing to you from Spain. My dad is 78 years old. He has been living with Parkinson's for the past 10 years and now he is really getting in a phase where he can't have a normal life anymore and cannot walk. His medication Prolopa is not really working anymore and he is literally overdosing on the medication just so he can have an hour or so of "normal" life, but this is also becoming very rare.
As you can imagine we are desperate to find some kind of cure that at least can slow down the disease. I have contacted my dad's doctor and pharmacy and they don't know anything about this.
Can you please let me know if there is any way that you can help my dad? Please...
Best regards
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Spend some time going through the many posts on this site. There are many things that might help your dad. In particular I would recommend looking at Vitamin B1 and melatonin for starters. Not being able to walk does make recovery difficult as exercise is very helpful.
Yes, High-dose B1/thiamine -Dosing instructions and other information at the links. Many people with Parkinson's have benefited from this treatment. Allow four months for full effect:
I don't know if he can afford it or be a good candidate for it, but if I were in that condition, I would go to Sonimodul Clinic in Switzerland for Palladio Thalamic Tractotomy (PTT), a form of focused ultrasound surgery. Google and search this site and YouTube for Sonimodul Clinic, Dr. Gallay, Dr. Jeanmonod, Palladio Thalamic Tractotomy, and Focused Ultrasound for Parkinson's Disease. Best wishes!
I think vitamin B1/Thiamine may help and because of its very good safety profile is considered low risk. It is worth noting that high dose thiamine/B1 has shown an effective dose range of 25 mg/day up to 4000 mg/day and it is not always easy to find the effective dose for each individual. Some people on this forum have reported benefit as early as the first day of use, but this is the exception and not the rule because others have taken 6 months to see initial benefit , but as park_bear mentioned, allow at least 4 months to see initial benefit. Lastly, some people have not found benefit with B1, but it appears the majority of users have. In a few cases, B1 allowed the user to lower their levodopa dose.
Another consideration is Citicoline because in some people it allows lowering of the levodopa dose while possibly offering other benefits according to the following systematic review of multiple studies using Citicoline in people with PD :
If Citicoline is going to be helpful for your dad, you should know within the first bottle. Citicoline has shown effectiveness at 500 mg/day to 2000 mg/day according to the following review :
It seems like the best effects were found in the 1000 mg/day to 2000 mg/day dose range, which should not be a problem with the capsules in the link I provided as they are 500 mg each which will allow you to cover the effective dose range. Citicoline has other health benefits. I previously wrote a little bit about Citicoline here :
Lastly, because PwP tend to have low to very low vitamin D levels, vitamin D level should be brought up well into the reference range( 30 to 100 ng/ml) as I wrote about the benefits for PwP of doing so here :
So informative thank you, but I have a few questions,
Diagnosed 1 year ago taking cl 3 x day. From day 1 i have off x. But if I take 4x day I get dystonia in my foot.
I’m presently taking b1 for the past 5 months per dr constantini but havnt found my sweet spot yet still experiencing off time and rigidity in my legs. I’ve now added on pea 400 and it’s helped a lot just in the 4 days that I started. The only problem is now all of a sudden experiencing anxiety,
My question is can I add Citicoline to the mix. I’m also taking b complex, vit c ,vit d and coq10. And l threonate. I’m Also wanting to try melatonin. Or is it one or the other.
Personally, I am a fan of trying only one supplement at a time so that you can know exactly what that supplement can do for you. Once you have optimized the dose for each supplement one at a time you will be more able to know exactly what supplement is doing what for you.
You added PEA and saw immediate benefit (congrats!), but now you are experiencing anxiety. It would be nice to temporarily take B1 out of the picture so that you can work specifically on optimizing your PEA dose to see if you can reduce the anxiety by reducing the dose a little at a time without having B1 in the picture to potentially "color" your results.
Once you have optimized the PEA dose and are improved and stable with hopefully reduced anxiety, you can then reintroduce B1 to finish fine tuning that dose. Btw, did you notice any benefit at all from B1? I am asking because some people such as Marc have reported zero benefit. The majority do seem to benefit, but clearly not everyone.
As far as Citicoline, I would definitely just keep that on your future prospects list until you have optimized both your PEA dose and your B1 dose. Adding one at a time also lets you know which supplements are most effective for you.
If you start several supplements at the same time and have a bad side effect, how will you know which one caused it? Since you won't know which is causing the problem, you will have to stop everything and restart one at a time to figure it out and that will take a significant amount of time to figure out. By adding one at a time, you know exactly what each supplements effects are, good and bad.
Yes the B1 has helped with the feet dystonia and tremors but feel I have a ways to go. And perhaps some anxiety(which was worse before taking b1) and also has helped reduce ankle ,knee pain)
Now that I have started the pea I don’t walk like a duck anymore , my legs were so stiff and feet slapping if that makes sense. It’s only been a few days,it’s so hard to add in all these vitamins so they don’t counteract with each other. Feels like I’m popping pills every hour for one thing or another.
I’m so hesitant in taking the recommended dose of pea 400 3 x a day because of the side effects “When taken by mouth: Phenethylamine is POSSIBLY UNSAFE for most people. Phenethylamine is similar to the drug amphetamine, and may cause similar side effects, such as rapid heart rate, anxiety, or agitation.”
Also I noted last night I was awake all night , which I always had a good night sleep. I’m also on mirtazapine (Serotonergic drugs interacts with PHENETHYLAMINE (PEA) so I need to find out If mirtazapine is a serotonongeric drug.
so I’m concerned in taking the pea. But at the same time it’s helped so much in my walking and off times reduced by at least 60%.
My MDS says it’s all in my mind and does not believe I have off times and stiffness so newly diagnosed one year ago. He only sees me on my on x. Not first thing in the morning or evenings. Even though I explained to him my 2-3 ocklock off x are brutal. He has suggested I go on rasagaline but I’m so avoiding it because of the side effects I read about. The sleep attacks scares me has I’m the only driver in the family for grandchildren,aging parents etc. and I certainly don’t want to get hallucinations.
That’s why I’m trying to find a more natural way.
Thanks again for all your time and advice much appreciated.
It may be worth reducing the PEA dose until the benefit disappears and then slightly increase until the benefit returns. If the dose where the benefit returns is low enough, it may stop or reduce the increased anxiety in addition to giving the added benefits you have noted.
I believe the PEA that members here are taking is PALMITOYLETHANOLAMIDE, and are taking either a micronized version (m-PEA), or an ultra-micronized version (um-PEA). You might want to go back and re-read some of the posts on it.
The tips here are great. Vitamin B, D groups, ultra-sound, etc.
Here are some more unusual tips, that are harder to come by.
1. Patients often have trouble with blood pressure fluctuations. Finding medication to lower it is easy, to raise or stabilize it can be difficult. A mix of "old style" lemonade and baking soda can stabilize blood pressure in these patients. You can find the recipe online.
2. Patients often have trouble with tremors and motor control, losing mobility. Marijuana can reduce tremors to near zero (CBD). It can also help with reduced appetite and difficulty getting to sleep. This tip may not work with patients that have no tremors but suffer from loss of feeling in hands and feet, but worth a try perhaps? Videos on youtube demonstrate it's effect on tremors. The cannabinoid receptor system is the largest in the human body and it's largely unknown to medical science. Also, check out what the Michael J Fox foundation says on this topic.
Reducing the dose of levodopa sounds worth a try. With levodopa patients sometimes receive benefits that they can't easily identify (none) but complain of difficulty with vision, light, and light flashes.
I am not a doctor but, I am a Pd patient who has lived a normal life, medication-free since 1996, when I started doing fast walking. I could not walk very fast to begin with but with determination and perseverance, I overcame most of my symptoms. I did not believe I would be able to do it because I had been walking so badly. I learned to concentrate on what I was doing and, in that way, I overcame the bad walking problems. Look up my name on Google and read all about it. Good luck. John Pepper
Agree, and sitting (or any) exercising will definitely help. I recommend on the top of this great forum, powerforparkinsons.org and the website of the Davis Phiney Foundation.
so sorry to hear about your dad. My husband is taking PEA suppliment,1200 mg a day at present,for 3 months,and then down to 600 mg per day.He couldn’t get out of bed six weeks ago, ut can now get up and back unaided.It would be worth investigating . He isn’t experiencing off periods anymore either.There never seens to be a “ one size fits all” answer,but PEA seems to benefit everyone in some way or other.
I’ve just started taking pea 400 3 x a day. Noticed on day two I could walk better rigidity down 30% but also noticed on day 3 major anxiety and off times. Did this happen to your husband when starting pea.
Hi Nonni,my husband saw no improvement for the first 3 weeks,and so far no problems either.the information Iv read on PEA doesn’t mention any of the pd sufferers having any adverse side effects,how it could affect off periods I can’t figure out.Possibly it would be worth emailing the suppliers to ask them if they have heard of anyone else experiencing problems.I found the people at Opti PEA the Danish manufacturers and suppliers to British health firms,good at answering queries.Let me know how you get on.
I am so sorry to hear your Dad, is having all these problems! I am 76, and have had Parkinson’s for, at least. 10 years, probably longer! I too, have great difficulty walking. I can’t stress enough the importance of range of motion exercise. As a trained physical exercise trainer, I stress warm ups and cool downs, after all exercise! I modify normal exercise routines, to fit my Parkinson symptoms problems. Stretching arms and legs, while lying in bed, and then performing range of motion exercises, each morning, is important, to start the day. If one can sit on the edge of the bed, exercise legs/calf muscles, by up & down motions, starting with feet on the floor. Perform several reps. Of 10. Then add a light weight, and perform two sets of reps, of 10. Then, do the same with arms/elbows. If able to stand, by bed, bend knees slightly down, with arms, at side, and gradually go up and down, bending knees deeper each time, but not real deep 2 reps of 10. To start out walking, prepare arms to help with balancing, and put one foot forward, bring other foot beside the first step. Start with small steps. If a partner is around to help person stay balanced, that would help. Also, if a Walker is needed, or s cane, the first few times, use those aids for balance. Strengthening of arms and, especially legs, is important, to be able to start walking! One step at a time, slowly, is the way to go. Your local PD Society chapter should have exercise pamphlets, designed for PD patients, specifically, is what I use, every day! I do have problems with freezing, sometimes! I have to start out slowly, if I am having a bad day. Each day is different, for me, living with PD symptoms. I seldom have a ‘good’ day, where being mobile works well ( almost normal ). It takes a lot of patience to push myself to exercise, especially on days where cogwheel rigidity, and stiffness, is bothering me. When I feel it is a struggle, I keep thinking, if I don’t push myself to try and walk, I could lose that ability, so, each day, I push myself. B-1 vitamins, and multi vitamins supplements, are helpful to me! Taking my medicine ( Sinemet ), on a regular basis, is essential, to my having mobility. Having severe osteoarthritis of the joints, is a hindrance to me, also, but I push myself past the threshold of pain. There is no magic ‘bullet’, so to speak, or pill, that I can take, that will give me the ability to walk, reasonably ok! Each day, I have to work hard to enable myself to walk! Using walking aids is essential for me! Wishing you the best of luck! Remember, patience is a virtue!
We don't really have all the information here....is your Dad's doctor a Movement Disorder Specialist or just a neurologist or just a primary care doctor? They have MDS's in Spain so you may need to reach out to them. We also don't know enough about the medications he is on except for the levodopa product. It is possible that additional medications from a different class might assist in symptoms (dopamine agonists, COMT, etc). Also, has he had the benefit of an evaluation by a therapy team: physical, occupational, speech?
All of our hearts go out to you and your dad. I read many of the posts below and they offer excellent suggestions... Here's my input... Considering your dad's age and current condition...
1) I have 2 (relatively large) massagers in my bed... I rest my arms on each one and it gently puts me to sleep... You can buy these on Amazon for about $90 or eBay for $60 each...
2) Get ... sunshine. It helps with vitamin D and serotonin production and it's ... FREE.
Various docs recommend at least 10 minutes daily.
3) Vibration plate machine!
These can be pricey -- I don't know how much they would be in Spain. I paid $500.00 usd for mine. But it is an amazing device. You just 'stand' on it... for a 10 minute session (more if needed). Or your dad could be sitting in a chair with his legs resting on the vibration plate.
There are good studies that show "vibration" is an effective self-therapy and non-invasive!
4) Sauna
I have a home sauna that I use 2 - 3 times a week, 90 minutes each session.
The body and brain needs/loves this type of 'stress' which helps it to recover even stronger.
5) Stationary Bike
If he can do this... THIS is a great way to get ... MOVEMENT... at whatever pace he can handle.
6) Diet
Of course you should check with your medical teams on anything that I've suggested for your dad's particular situation. Personally, I am on day #243 of the O.M.A.D. diet (one meal a day). I've lost over 50 pounds! ... And I can still eat pizza... potatoes... fruit!
There are many great health channels on YouTube that I watch (and learn so much!)....
Here are some of my favorites:
*Bob and Brad -- physical therapists
*Dr Eric Berg -- nutrition
*Dr Mandell -- nutrition
*Dr Mark Hyman, M.D. Functional Medicine
*Dr Josh Axe, Chiropractor and Doctor of Natural Medicine
*Dr Ford Brewer, M.D.
*Dr. Brad Stan Stanfield, M.D.
*Dr Rhonda Patrick, Biologist (fantastic channel, emphasizing nutrition and other therapies)
Her website: FoundMyFitness.com
*Dr John Bergman, Chiropractor -- FANTASTIC speaker and information
*The Brain Docs (husband and wife team) - both are M.D. and MDS specialists and head the neurology department at Loma Linda University, California
*Dr Ken Berry, M.D. -- down to earth and REAL... doesn't sell stuff...
Hola, I agree with the others that exercise is very important. Riding a stationary bike, sitting in a chair lifting some weight, etc. Slowly but gradually, working up to more time and resistance. In my area I go to Rock Steady Boxing. They accept people of all ages and degrees of PD. We go through warm-ups then various physical therapy type exercises. Some people stand, some people sit. Precautions are taken so that fall risk is minimalized. We also do boxing which combines thinking and movement. I have seen a fellow boxer with a more advanced stage of PD show improvement... physically and mentally. Check and see if there is some type of exercise program near you that his doctor would clear him for.
Also, go to greenmedinfo.com. There is an article posted about a 75 year old man's dramatic recovery from PD after 3 months of being on a gluten-free diet. I am in my second month of gluten-free after a lifetime of a gluten heavy diet. The jury is still out but, I am willing to go 6 months minimum to see if there is any improvement. It's not easy because there is gluten in a lot of stuff. Hope this helps.
For me, having a good daily bowel movement is very important. A better bowel movement means better absorption on all the meds and supplements that u take. And my trick is to drink plenty of water ( min 6 to 8 cups per day) and eat about 5 dried plums per day. Hope ur dad feel better!
What about the California Standford vibrating gloves? Dr. Peter Tass worked on it for the last 20 years and it shoud cure Parkinson in 6 months of treatement. But they don't answer and I don't know wat's going one there!
thank you for sharing your heartache and desire for your dad. Having you as a cheerleader can make a huge difference and mean a lot emotionally for him.
Was your dad more active naturally before his progression to now? I ask that, because was he proactive with exercise---walking? using weights or cans from the pantry? Does he like music? Are you able to loving suggest things like singing with him for about 5 minutes? Is he able to move his legs? Do your area have access to Physical therapy in home help if he can't go to places? Getting the muscles and blood flow into the body is a huge help for medication/mindset/attitude. Are you able to get him in a car and go for a drive? change of scenery for the mind is good .
Since we don't know his circumstances other than what you shared, I would maybe suggest start with inventory of : his mindset, attitude, ability with his arms and mind. Has his doctor made any recommendations? If you can write down like a journal what you see and feel about him and report that in detail to the Dr. maybe some "accomodations" with hands on exercise/stretching help, small/slow changes in medication, adding or finding something to inspire his creative side or instinct. Also a subtle but effective tool is music. Not just ads on TV or shows just to have the noise....music is soothing, uplifting, meditative, helpful to his spirit, and can be lively enough to get him and you to smile more?!
Just suggestions to take inventory and create a plan. It's never too late to try or add to begin. 10 years is a good stretch with PD, and even though everyone is different and reacts differently to PD, your dad is unique and special and worth it.
Bless you as you tend to and love him. That's the best gift !
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