Living with Parkinson's Disease - Meet others & come say hi

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little scary about future.

@dfelix

I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little scary about future.

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@dfelix

Hello Dennis

Your concerns about the future are certainly understandable. While PD cannot be cured it can be controlled with the right kinds of medicine and an active lifestyle. Encourage your wife to get involved with physical therapy (especially the type for PD) and to remain active. PD is not a disease that you can take "lying down" you must be active. Those who are the most successful in keeping their disability at a moderate level are those who remain active.

Many hospitals also offer caregiver support groups where you can discuss your fears/anxieties about dealing with a loved one who has a chronic illness. Please give that a try!

Keep posting and let me know of your concerns.

Teresa

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

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Normal B1 blood level is to be expected. The therapy involves increasing the thiamine hcl level (Vitacost thiamine hcl in 500mg easy swallow capsules).
My personal experience – The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms…
parkinson's high dose thiamine hcl
https://www.facebook.com/groups/232260083958797/about/
https://highdosethiamine.org/therapy-2/

Tremor is not easily impacted by thiamine hcl. It takes time with thiamine hcl and carbidopa/levodopa.

@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

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Thank you again for this information!! I’m going to start my mom on this. They have added primidone and clonazepam to her card/Levo. Has really made her sleep and leg weakness. I’m all about a less aggressive way to treat the tremors.

@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

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Did you start with thiamine when first diagnosed? Do you have to meet certain criteria to get on it? Do you know if most doctors prescribe it. I’m not on Facebook. Thx for any info you can give me.

@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

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I was diagnosed in in 2012. In six years the Parkinson's symptoms became disabling. All this time I tried many of the standard Parkinson meds trying to find the right fit. I researched on Google for alternatives. Then I found B1 and Doc Costantini. He is a wonderful doctor and human being (charitable). He has office in Italy. If you want to travel to his office for an appointment, he has office exam fee. IF you cannot or do not want to travel to Italy, he will help you via internet without charge. He speaks only Italian but has associate doctor and staff with English language. Seven month ago, through internet, the doctor advised me on thiamine hcl and recommended my dose. At no charge.
Connect with me
https://healthunlocked.com/user/royprop
https://healthunlocked.com/parkinsonsmovement
B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to IM B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever…".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Google search: Doctor Costantini Parkinson
Dr Antonio Costantini, carapetata@libero.it
https://highdosethiamine.org
https://highdosethiamine.org/therapy-2/

https://m.facebook.com/groups/232260083958797?view=info

I am retired and spend my free time informing (PwP) People with Parkinson's. Please ask for more information.

Parkinson's Relief, Questions and Answers Link:
https://healthunlocked.com/parkinsonsmovement/posts/138096744/dr.-costantini-dr.-colangeli-answer-40-frequently-asked-questions-faqs-about-thiamine-b1-protocol-email-carapetata-libero.it

@nyparkie

Hi,
I too am new here. I was diagnosed 4 years ago, have ADHD,Tourettes, restless leg, and Parkinson's, as well as terrible stenosis with pain in legs and arms.
THE ONLY THING THAT HELPS PARKINSON'S IS EXERCISE. And Cannabis, which helps, pain, mood and focus.
I've tried cycling for Parkinson's, boxing, and aquatic cardio program which for me is best. Massages regularly are a great help as well. but get yourself out and exercise!!!!

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Hi, @nyparkie – wanted to check in with you and see how things are going with your Parkinson's?

@tllaes, you had talked about your wife experiencing some rigidity and vise grips when she was holding onto something. How is she doing lately?

Hello @nyparkie – When you posted several months ago, you mentioned that exercise was very helpful for you. Are you still exercising? What types of exercise are most helpful for you?

@knightkris

Thank you for your reply.

I have a mild tremor in my right hand only I am taking meds. Levo Carb. It is helping out. It is a you stated, frustrating. The one thing that I did do at the start was to get a second opinion. didn’t believe it myself. I never thought about Physical therapy for PD. No one suggested this to me. I will have to have the doctor refer me to this. I will have to look for a support group. This has been suggested to me, but I never did anything about it. Now is the time to do this.

I haven’t reached out to anyone. As I am strong and can do everything myself NOT.

Thank you for getting back to me so quickly.

Kris

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Yes, it comes as a shock to PD patients to find that they must be their own advocates. Not all of us are temperamentally suited to stare down the doctor as he's about to bolt for his next patient to ask about recommendations for exercise, or PT, or speech therapy. But you should. Britain's National Health Service by comparison encourages an immediate team approach to PD care. Collegiality best benefits the patient. (cf. NICE Guidelines)

@anna1060

Yes, it comes as a shock to PD patients to find that they must be their own advocates. Not all of us are temperamentally suited to stare down the doctor as he's about to bolt for his next patient to ask about recommendations for exercise, or PT, or speech therapy. But you should. Britain's National Health Service by comparison encourages an immediate team approach to PD care. Collegiality best benefits the patient. (cf. NICE Guidelines)

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@anna1060
So very true. Not everyone can address doctors in a straightforward manner. I think the reasons for this are many. We are used to thinking that doctors know everything and we just need to look to them to give us all the answers. For many of us, being our own advocate is a foreign idea. It is so necessary, though.

Regular exercise, speech therapy and support groups are all important adjuncts to PD treatment. Medicines are only one part of the picture, although they are very important. If you miss out on the exercise and physical therapy you have lost a very important component to your PD treatment.

@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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I am joining this group because my 74 year old mother has just been diagnosed with Parkinsons this year. My mom has my dad to help her daily and I am the only daughter that lives within close enough distance to assist on a regular basis. We are being seen by neurologist at Michigan State University and she is on Carbidopa and Carbidopa Levidopa. My biggest question has to do with how long does Parkinsons exist in ones body before the symptoms become detectable; my mom has had undiagnosed and unexplained nausea for approximately 10-11 years and no one seems to be able to diagnose. We have undergone every digestive test and scope / scan possible with no diagnosis including biopsies with negative results on all fronts. Does anyone else experience this with Parkinsons or not at all? Are there other drugs available for treatment of Parkinsons that do not cause severe nausea – she has tried taking with sweets, apple juice and plenty of water and nothing seems to help what is already a very tentative stomach/digestive situation – leaving her in bed for sometimes 4 out of 7 days a week……. looking for any straw

@royprop

Normal B1 blood level is to be expected. The therapy involves increasing the thiamine hcl level (Vitacost thiamine hcl in 500mg easy swallow capsules).
My personal experience – The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms…
parkinson's high dose thiamine hcl
https://www.facebook.com/groups/232260083958797/about/
https://highdosethiamine.org/therapy-2/

Tremor is not easily impacted by thiamine hcl. It takes time with thiamine hcl and carbidopa/levodopa.

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@royprop – are you in the united states and if so who oversees your treatment and how did you find out what the dosage should by daily?

@portera64

I am joining this group because my 74 year old mother has just been diagnosed with Parkinsons this year. My mom has my dad to help her daily and I am the only daughter that lives within close enough distance to assist on a regular basis. We are being seen by neurologist at Michigan State University and she is on Carbidopa and Carbidopa Levidopa. My biggest question has to do with how long does Parkinsons exist in ones body before the symptoms become detectable; my mom has had undiagnosed and unexplained nausea for approximately 10-11 years and no one seems to be able to diagnose. We have undergone every digestive test and scope / scan possible with no diagnosis including biopsies with negative results on all fronts. Does anyone else experience this with Parkinsons or not at all? Are there other drugs available for treatment of Parkinsons that do not cause severe nausea – she has tried taking with sweets, apple juice and plenty of water and nothing seems to help what is already a very tentative stomach/digestive situation – leaving her in bed for sometimes 4 out of 7 days a week……. looking for any straw

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Welcome to Mayo Connect, @portera64

I am sorry to hear of your mother's recent diagnosis of PD. It is a rather new diagnosis and it might take time to find just the right dosage of meds. How much Carbidopa/Levodopa is she taking and how many times a day? Has she reported the nausea to her doctor? There might be some changes available.

For all of us the diagnosis often comes after symptoms become worse. Did your mother also have problems with balance, gait (walking), tremors, etc.?

@hopeful33250

@knightkris So glad to be of help. Yes there is physical therapy for PD and it is great. It teaches you how to walk better and have better balance. Many hospitals offer balance classes as well. You can also look for Tai-Chi classes in your community, Tai-Chi is also good for balance. If you go the the National Parkinson’s website you can probably find support groups in your area. Your neurologist’s office also might be able to refer you to a support group! We wish you well – keep in touch and let us know how you are doing. Mayo Connect is a caring community!

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My husband has Parkinson's and we live in The Dalles, Oregon. We are very fortunate to have a couple whom run a twice a week exercise program here. This program has been going on for about three months. Participants are in various stages of this disease. With the exercises, everyone has made so much positive progress.

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