Counting blessings.: They call Parkinson's... - Cure Parkinson's

Cure Parkinson's

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Counting blessings.

48 Replies

They call Parkinson's a progressive disease.

I don’t know but since 2012 my condition has progressively gotten better by a lot. Sure, there's bad hour here and there. Even bad days. Overall I am blessed. Thank you is my daily prayer, Doctor Antonio Costantini.

48 Replies
ddmagee1 profile image
ddmagee1

Dr. Costantini did his best to help his patients, and further the cause of helping victims of the multifaceted, neurodegenerative disease, Parkinson’s! I’m glad you were helped, by Dr. Costantini, RoyProp!

Nitro53 profile image
Nitro53

That’s great Roy but what do you think helped other than the B1?

in reply to Nitro53

Carbidopa levodopa

Smittybear7 profile image
Smittybear7 in reply to

What are the side effects of Cl

in reply to Smittybear7

What are the side effects of Parkinson’s?

Smittybear7 profile image
Smittybear7

What are the side effects of cl

ion_ion profile image
ion_ion in reply to Smittybear7

Depends. I do not have any. Initially I was reluctant to take it.

Smittybear7 profile image
Smittybear7 in reply to ion_ion

Thank you I'm a little frightened to start medication due to some of the side effects of red about I'd like to follow you.

ion_ion profile image
ion_ion in reply to Smittybear7

I was, too! But I gave it a try and maybe sometimes makes me a little sleepy but otherwise I tolerate it very well. You should do it gradually.

jeeves19 profile image
jeeves19

You gradually increased your CL dose from 2012! So one could hardly say that you’re improving. The well being is down to drugs.

Dap1948 profile image
Dap1948

I have improved since 2017, when B1 started, and haven’t increased my ldopa meds

in reply to Dap1948

What is your ldopa dose size?How many daily?

Dap1948 profile image
Dap1948 in reply to

50mg x 4 daily.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Is that cl or a different medication?

Dap1948 profile image
Dap1948 in reply to Smittybear7

It’s madopar, the ldopa preferred in UK

Smittybear7 profile image
Smittybear7 in reply to Dap1948

I am really frustrated I'm trying to figure out how much do you want to take. I'm currently on 1000 milligrams a day. Any suggestions? Does your neurologist work with you on the B1 dosage? How long have you been on the medication that you're taking for Parkinson's? Thank you for your help

Dap1948 profile image
Dap1948 in reply to Smittybear7

How long have you been on 1 gram? Have you seen any changes, good or bad? I would recommend you stay on that level for a month or so if you haven’t seen any symptoms which might suggest it’s too high, such as anxiety. I don’t have a neurologist at the moment!

I’ve been on Parkinson’s meds for about six or seven years.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Who prescribed the medication,?When I started b1 at 1500mg I started having freezing episodes. I. Cut back to 1000mg still having freezing episodes. My nutritionist/pharmacist muscle tested me for b1 and said 1000mg So I don't know if it's too much

Dap1948 profile image
Dap1948 in reply to Smittybear7

If you’re having any adverse symptoms I would suggest taking a B1 break for just a week and restarting at a lower dosage. You have nothing to lose. I’m afraid that finding the right dose is very much down to personal trial and testing. The muscle testing has indicated that your body wants the B1, it’s just the quantity that is in question. Keep a diary. Note positives and negatives. I find I get a clearer picture of what’s going on when I look back over several weeks of diary comments, even if it’s as brief as 'an ok day'!

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Thanks I have 500mg b1 Should I take it in the morning or lunch time? What should I be looking for?

Dap1948 profile image
Dap1948 in reply to Smittybear7

I would suggest to take it first thing in the morning. I would list your symptoms and monitor them for changes. After my taking B1 for three months friends told me I was moving better. I, personally, hadn’t noticed! They told me I was smiling right up to my eyes. I hadn’t noticed! I started joining clubs yet I didn’t appreciate that this was because I had more energy! For me, therefore, I had less fatigue and less rigidity. My sense of smell is really good now. But it takes time. I would suggest you keep on 500mg for a month or two while monitoring everything. Treat it like a research project. Your diary is your data. But first you need to take a break to establish that the B1 is causing the problems. Stop B1 until the symptoms, the freezing, stops. Then you’ll know it’s a B1 overdose. You need to check that first. Please message me if you want a sounding board!

Smittybear7 profile image
Smittybear7 in reply to Dap1948

What if the freezing doesn't stop?Also what meds eliminate tremors freezing and muscle cramping and rigidity?thanks for all your help. I saw an orthopedic surgeon today. He said my issues are not related to arthritis or the muscle tear and referred me to a neurologist to rule out Parkinson's. I find it interesting that the muscle cramping and rigidity only occurs when sitting or recently when I lay a certain way in bed. Getting in and out of the car, bed and off and on the toilet are difficult and painful. I stopped exercising in hopes that it would relieve the issues. I'm afraid to try any meds until I exhaust the other possibilites. Am I being unrealistic?

Check out nutritional frontiers. Com They have a protocol for Parkinson's. A YouTube video. I use a lot of their products. Apparently people are having success with their protocol. Let me know what you think. Are you on Facebook? I d like to be your friend

kevowpd profile image
kevowpd in reply to Smittybear7

I think you should try to understand what is (likely) the cause of your issues before you spend too much more time pursuimg alternative/adjunctive PD remedies. I.e you need a diagnosis.

Have you seen a neurologist?

Smittybear7 profile image
Smittybear7 in reply to kevowpd

Diagnosed with Parkinsonism 2017

kevowpd profile image
kevowpd in reply to Smittybear7

And what does the neurologist that dx you 4 years ago say about your condition today?

Smittybear7 profile image
Smittybear7 in reply to kevowpd

Parkinsonism he addressed my issues with pt and ot. Didn't have a solution for the issues I am having. MRI of my hip showed arthritis and a muscle tear. That was dismissed today as a cause for my issues by an orthopedic surgeon. I'm trying to avoid medication until I find a cause for my issues .so I will see another neurologist that specializes in Parkinson's .

Dap1948 profile image
Dap1948 in reply to Smittybear7

You will need to see a neurologist. Parkinson‘s medication should reduce tremor and should reduce freezing and rigidity. You are describing common symptoms of Parkinson’s so I should be prepared for a positive diagnosis. The good news is that the Parkinson‘s medication could make you feel a lot better. For muscle cramp I take magnesium. I am on Facebook but you could also message me privately through Healthunlocked.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Let's connect on both

Smittybear7 profile image
Smittybear7 in reply to Smittybear7

Thanks for your help

in reply to Smittybear7

Describe freezing please?I call my episodes paralysis

Smittybear7 profile image
Smittybear7 in reply to

Feet stuck not wanting to move usually after standing for a while . I may need a hip replacement due to a torn labrum and degenerative arthritis. I can't sit for more than10 minutes without my quadriceps cramping up and mybig toe cramping. I spend most of the day standing or laying down. . The past couple of days if I lay on my back a certain way the same thing happens. I have difficulty getting in and out of bed, in and out of the car, on and off the toilet.

MyGolf profile image
MyGolf

Where does Dr. Costantini practice?

in reply to MyGolf

He is Saint Costantini.Sadly the China virus sent him home.

jujulini profile image
jujulini

I, too, have improved since taking B1 in 2018. I have been on the same dose of c/l for the past 7 yrs. (25/100 7 x/day) Homeopathy has also helped. I was diagnosed 15 yrs ago. Symptoms started 19 yrs ago.

in reply to jujulini

I am trying to lower two tablets to one tablet.

Smittybear7 profile image
Smittybear7 in reply to jujulini

What homeopathy do you use?

jujulini profile image
jujulini in reply to Smittybear7

Homeopathy is individualized to each persons symptoms, so what works for me may not work for you. With that said, I currently take arsenicum iodatum & zincum metallicum for the pd.

Smittybear7 profile image
Smittybear7 in reply to jujulini

I am taking cortisol homeopathic. twice a day. Nutritionist/pharmacist thinks my issues are adrenal related. Are you working with a homeopathic practitioner?

jujulini profile image
jujulini in reply to Smittybear7

I did years ago. The homeopath was a friend of mine, and I learned alot from her. For the past 15 years, Ive been learning all I can from the Materia Medicas that I have. What is "cortisol homeopathic"?

Smittybear7 profile image
Smittybear7 in reply to jujulini

Dropper liquid that my nutritionist/pharmacist makes up. He does homeopathy.

Erniediaz1018 profile image
Erniediaz1018

Thank you Roy, you have been a great encouragement to me since I joined health unlocked. I’m happy for you.

reneep profile image
reneep

I began B1 therapy and my blood pressure increased to an alarming number after taking 500 mg 1x a day for four days. I’m disappointed because it was working .

in reply to reneep

I am also disappointed

Art_lover45 profile image
Art_lover45

Hi thereI have a problem which no-one seems to mention. I have too much saliva - which I expected and could cope with except that now the consistency is thick and stringy and bubbly and will not be washed away. I have a good relationship with the specialist maxilla facial team but of course because of Covid my follow up appointment has been put back until October (previous appointment was January). At its worst at night when it wakes me up as it trails down my throat, and chokes me. I need to find something that will clean my teeth and gums as there is always a residue. My dentist says I have good dental hygiene but I suck my teeth like an old woman. (I am 76 so perhaps I am asking too much). Any suggestions gratefully received.

Sandra Blattmann

parkie13 profile image
parkie13 in reply to Art_lover45

3% hydrogen peroxide, use to gargle, rinse mouth as often as needed. I use it full strength, you could dilute till your mouth gets used to it. You can add to a water pick. No sugar, it feeds all. I wish I could take my own advice on sugar.

Thick saliva should be spat out not swallowed.

Art_lover45 profile image
Art_lover45 in reply to parkie13

Thanks for that. The problem is the saliva does not follow the rules. I am seeing the Maxilla Facial people on Saturday (I managed to get a cancellation at short notice) and Botox will relieve the symptoms I hope. They are kind and helpful but since covid we are all suffering from NHS neglect. I don't care what anyone says - all the clapping in the world does not replace the void left by cancelled follow up appointments.

parkie13 profile image
parkie13 in reply to Art_lover45

Hope it all goes well. Mary

chartist profile image
chartist in reply to Art_lover45

Mucinex is noted for thinning saliva, but you also have to drink lots of water with it, which is good since one cause of thick saliva is dehydration.

Art

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