Life’s in turmoil: Pd needs peace and rest... - Cure Parkinson's

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Life’s in turmoil

Lidge0214 profile image
47 Replies

Pd needs peace and rest right? My family has no concern for my pd. Daughter and son 35 and 41 are physically fighting over her wanting his child. Husbands has only worry but how my health will hurt his lifestyle.I was do 6 yrs ago and know I’m going down fast.I just want the ones of you who have people that are concerned about you and put you first to praise the Lord. But would you pray for me I can’t tell anyone else how I’m nothing to them thanks

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Lidge0214 profile image
Lidge0214
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47 Replies
Boyce3600 profile image
Boyce3600

Prayers going up now.

Lidge0214 profile image
Lidge0214 in reply toBoyce3600

Thank you

park_bear profile image
park_bear

You need to find support. Most communities have social services for seniors of various kinds.

Lidge0214 profile image
Lidge0214 in reply topark_bear

I quit driving last year and have no way to the meetings.I couldn’t tell anyone these problems until today and am so thankful to have people that would understand

BluesBilly profile image
BluesBilly in reply toLidge0214

some communities have free or reduced cost senior transport.

Going down fast you say! I want you to start right now high dose thiamin HCL. Search its use on HU.

Lidge0214 profile image
Lidge0214 in reply to

I’ve been reading in different posts.Been thinking about it

in reply toLidge0214

Go to my profile. Regarding B1, thiamin HCL, read my posts and replies. Click Follow. Learn of my experience over the last year. Discover my wellness as direct result of first choosing hi dose allithiamine then later thiamin HCL.

I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.

I wish you will share.

Rosabellazita profile image
Rosabellazita in reply to

Roy can u tell me what to bdo to calm this tremor down.i m on amantadine ...that's it.

in reply toRosabellazita

B1 has not totally suppressed my tremor. It has with all other symptoms. My tremor is mild compared to one year ago

Cindyf profile image
Cindyf in reply to

Where do you get the thiamine. Hubby has pd with dementia and is progressing the past month. He would like to try it.

in reply toCindyf

Amazon or Vitacost.com

Vitacost vitamin B1 (as thiamin HCL) 500mg, easy swallow capsules

Cindyf profile image
Cindyf in reply to

Thanks. You really think this helps? It seems like such a simple thing to take for such a huge set of problems. We are willing to try almost anything.

in reply toCindyf

No help for dementia but myself and others have a testimony of its benefit.

I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.

Cindyf profile image
Cindyf in reply toCindyf

Thanks. Very interesting.

Astra7 profile image
Astra7

It is awful when you just need peace and quiet. My situation is a little similar - husbands response to me having PD is that it's harder for him than me! Given that I ask nothing from him that's hard to imagine!

Do try the b1 and also mannitol. They have helped a lot and are relatively cheap and free of side effects.

Who wants a baby?

M1tz1 profile image
M1tz1

Praying for you. Sorry you're going through this pain.

jeanette2372 profile image
jeanette2372

So sorry to hear that. My thoughts are with you.

JohnPepper profile image
JohnPepper

My deepest sympathies to you. Maybe you are to blame for that situation. That is not a criticism! Other people, including family, do not know what Pd does to us. Have you got any good books written by Pd sufferers to show them. Do you know as much as you should about Pd and what YOU can do about it?

If you would like to know more then look at my website - reverseparkinsons.net and contact me. I will help you as much as I can, at no charge to yourself.

JennyBies profile image
JennyBies

I think it's hard for our loved ones to understand the impact Parkinson's has on us. This may be especially true if you were the care giver for everyone else in your family. Your family has leaned on your shoulders to cry on and for support. Your kind words of love and wisdom have always helped them find clarity and raised their spirits. And your unwavering love has been a light of hope on their darkest days. They are unaccustomed to seeing you in a different role. Deep down it probably scares them to see you change from being their pillar of strength and support to needing their strength and support. It's probably a hard role reversal for you as well. It's hard to come to terms with our change of health.

Try to sit down with your family and explain your evolving needs. Describe the challenges you are experiencing right now and your needs for calm, emotional support, as well as physical support. Let them know you NEED their love and support. Take the lead initially and give them specifics on what you need right now from each one of them. If they won't listen, try again with the assistance of your doctor or a counselor.

My prayers are with you

Jennifer

Lidge0214 profile image
Lidge0214 in reply toJennyBies

My son has a two year old and the mother is in prison.He lives with us and she lives next with her 2 kids and husband.He was in jail for her birth and now they truly love her but we do. He was sitting outside and it has been sooo bad here

JennyBies profile image
JennyBies in reply toLidge0214

This does indeed sound like a very difficult and challenging situation. However you must take care of yourself first before you can take care of everyone else. (Similar to airmasks on an airplane during an emergency. You have to put your own mask on first and then assist your children with their masks.) Your need for an emotionally calm environment is probably a shared need by everyone else in your immediate family. Try to be firm and very direct about this health need. (Think of the calm environment as the air in the airmasks analogy.)

FMundo profile image
FMundo in reply toJennyBies

Jennifer - good and compassionate advice. May or may not work but I'm a strong believer that many times we "think" we're communicating our needs but we haven't stated it specifically enough.

JennyBies profile image
JennyBies in reply toFMundo

Agreed.

Most people recognize that something needs to be done. They just don't know what to do and how to help. As a result they may feel frustrated and helpless. Give them very specific directions. Once they have direction and know what to do, they'll feel more comfortable.

alexask profile image
alexask

Re: "Daughter and son 35 and 41 are physically fighting over her wanting his child" ??? Is this Kentucky?

marion11005 profile image
marion11005 in reply toalexask

Aren't you from the UK? What do you mean by the question "Is this Kentucky?"

alexask profile image
alexask in reply tomarion11005

Daughter and Son. Surely Daughter-in-law and Son or other way round. I'll get me coat.

marion11005 profile image
marion11005 in reply toalexask

Maybe you're thinking of West Yorkshire. examiner.co.uk/news/west-yo...

jupiterjane profile image
jupiterjane

Hi! I don't think 2 people who physically fight with each other should have children! Not good role modeling.

*What's Wrong with People*

I love the crisp, fresh air

Through my open window

This new Spring day,

The sun still asleep,

An hour of darkness

Still left

And all I

I want to do is hide,

To get lost

In the cool air,

To find

The peace in going home

I’m scared,

Scared all the time now

Knowing that each day

Means there’s a little less

Of me

Having lost so much

Of my strength, my will,

My soul

To some damn disease

I thought I could depend on you

My family, my friends

To help,

To pick up my spirits

To…

I hate people,

Hate them!

Especially those who claim

To love you

Family, friends

These are the people

You think understand

Who should be compassionate?

Who should know your limitation?

Not make you beg for help

or suffer in pain because

They,

I don’t know what

The HELL they want!

What do they want

From me?

Time is running out and

there is so much less of me

But I need to be strong

They need me to be strong.

I need to be loved

And cared for.

What, what is wrong with people?

Why can’t they see my pain,

why can’t they see

How little there is

of me?

How short time is.

Why, when I should

be held closer

do I feel them pushing me away?

What the fuck is wrong with people?

What do they want?

Lidge0214 profile image
Lidge0214 in reply tojupiterjane

You know exactly

Enidah profile image
Enidah in reply tojupiterjane

JJ- I love the honesty of that. One thing I'm learning is how tough I need to be. And that my experience with or without Parkinson's is not a new thing. We are all alone when we suffer. Though I don't minimize the comfort of loved ones on the edge of our suffering. Have you read May Sarton's book, Endgame: a journal of the 79th year. Things like this make me feel less alone and give me an understanding that this is what life is. At some point we all suffer. I pray for grace and strength and perspective. And then I try to practice those things. Jupiter Jane, I know it's hard but I do love it when you share.

As far as the current thread, I want to say also that we have got to protect ourselves from the kerfuffle of family. When there is a ripple in a family relationship I take steps immediately to mend any part I might have had in it as I no longer have the strength on any level to deal with the stress. I have been very fortunate to have a calm loving family. If one isn't so fortunate then I think it's imperative to find people who will give you that and to steep yourself in the things that you find a relief and enjoyment. Wear earplugs if you have to to block out the drama, play soothing music and find people that feed your spirit and strength instead of sapping it. If you find a support group there will undoubtedly be somebody who will give you a ride. Be tough but kind so your connection will not be the toxic tethers of enmeshment and control. That won't get you anything but stress and more of the same.

Wesley13 profile image
Wesley13 in reply tojupiterjane

If people don't have the time or the patience to give you a bit of respect then bollocks to them tell them to do one having said that it is a daily battle with everyone loved ones who don't understand spouses who think it's harder for them than you they have no idea how hard we have to fight just to get through each day with dignity we have to fight back be it some impatient tosser in the bank or some prick on the phone even loved ones show incredible lack of understanding or even try to grasp the situation like I said if people can't be bothered to try then excuse my language fuck them

Cindyf profile image
Cindyf

I'm sorry your going through this on top of trying to cope with pd. I don't know where you live, but everyone is deserving of love, and forgiving with dignity. Maybe it's time to think about an in home caregiver or moving into an assisted living. I hope you find the help you need.

Lidge0214 profile image
Lidge0214 in reply toCindyf

I’m 61 and still able to do most of housework.I have a great pastor but it just hurts thinking how we give our lives taking care of family and then...

Cindyf profile image
Cindyf in reply toLidge0214

Oh agreed! Sometimes we care for our loved ones so much and so well we spoil them and never teach them respect and gratitude for US. Been there..

ddmagee1 profile image
ddmagee1

Praying for you and that somehow circumstances will get better for you. Do you have a clergyman or pastor that you could discuss your circumstances with? You need support, for sure! We, in this forum, are here for you. Thanks for sharing! It has been my experience that family doesn't always understand the difficulties I face dealing with PD. To some, it's just a sterile, benign name of some brain ailment. Perhaps telling others that we have an incurable, progressive nerve degeneration of the brain, type disease, would help them to understand that PD is difficult to live with and it's victims need others to show understanding toward our changing needs.

Beckey profile image
Beckey

Who do you see for medical care -- a movement disorders specialist? That person should have a social worker in the office who can help you access benefits, like a shuttle service to take you to and from support group get-togethers and exercise for PD classes (important!). Contact the Parkinson's Foundation about the services they can provide. Peace of mind is so very important! I wish you all the best.

plainbob profile image
plainbob

The Lord be with you

caroldelaune profile image
caroldelaune

my heart goes out to you...you need to find peace ...have you tried to let go and let God? I am praying for you..hugs

Lidge0214 profile image
Lidge0214 in reply tocaroldelaune

Thank you

pad10 profile image
pad10

Thinking of you and praying for you....hoping you will find some peace soon.You are not alone...my hope is that you will find some local people to connect to. Having been there I know how hard it is to reach out when you don't feel well, you have limitations and you feel like no one understands. But don't give up. It is good that you reached out here...you found out there are people who care. :) ...sending hugs...

Lidge0214 profile image
Lidge0214 in reply topad10

Thank you all

delboy381 profile image
delboy381

Life is 10% what happens to you and 90% how you react to it. Charles R. Swindoll

Kpaschel1 profile image
Kpaschel1

I can certainly identify with your situation. Please try to take care of yourself as it seems that no one else does. I know that’s easier said than done. I hope you find some peace.

justhavefun2 profile image
justhavefun2

Prayers for you and your family.

Lidge0214 profile image
Lidge0214 in reply tojusthavefun2

I thank each of you for prayers and Encouragement .son is letting them see 2 yr niece little bit. They think they can raise her better than him and us because I have PD. I have been telling my husband exactly how I feel now and am giving it over to God. It’s a journey we are taking only ones with this understand.

Please ALWAYS stay positive under all circumstances. You will come out ahead if you do. Block out the negativity around you and spend just a couple of minutes meditating on positive thoughts. You will be amazed.

Never ever give up.

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