i feel all alone: i have been dx with pd... - Cure Parkinson's

Cure Parkinson's

26,583 members27,897 posts

i feel all alone

bott profile image
bott
25 Replies

i have been dx with pd and just now getting to the place where i can almost say it outloud

i hate what i look like, what i can't do anymore and i have never felt so alone in my life. i knw i am substituting food to cover my feelings

i know i have friends out there to help me and i am reaching out ..........................

Written by
bott profile image
bott
To view profiles and participate in discussions please or .
25 Replies
etterus profile image
etterus

Welcome aboard. You have reached the correct site. Here you will find knowledge, support, camaraderie, and love. You will also find pain, suffering and even death. It's life as it was intended to be. We all share the same realities to various degrees with or without PD... however it does help when you can find a society of people with familiarities and experiences to lighten the load such as this blog.

grayland profile image
grayland

Welcome. "You have pd" is not easy to hear, or accept. It is a marathon, not a sprint

toward acceptance. We do it together, and alone. I hope you find peace.

wordworks2001 profile image
wordworks2001

It's the journey that is important, not the destination. Parkinson's is not a destination, it is a challenge on the way to it. For some of us, it seems like an insurmountable obstacle that keeps us from ever achieving anything in life again. For others it is a simple bump in the road.

When you are new to the Parkie world, it is all these things and more. It is experiencing the seven stages of grief over and over again. It seems like an endless roller coaster ride that you can't get off of. It is a pity party for some. For others it is days full of denial and nights full of fear.

But the good news is you can get through it. You can defeat the feelings of frustration and helplessness. To do this successfully, think of PD as a challenge, not a handicap. If you can't accomplish a task the way you always did in the past, find a new way to do it. Surround your self with positive people who encourage you and if anyone feels sorry for you tell them to stop it.

Life is a journey, not a destination. Take that journey with us Bott. You won't regret it and believe me, it's better than slowly stewing in your own juices of doubt and fear.

Joealt profile image
Joealt

OMG! When I read your post i said "It's like we all share the same brain".

Have you ever been visited by someone who wants to borrow money but takes an hour to bring it up? Having Parkinsons is sort of like being visited by that person every day.

CJ49 profile image
CJ49

I agree with WoodWorks comment....PD is what it is....and feeling "depressed" is one of the biggest "hurdles" to get over. We all have our times feeling depressed, but just knowing that you have fellow "Parkies" out there, that know what you're going through is our "help-line."

Welcome.....and never feel alone again!

mitchdee profile image
mitchdee

This site and the fellow parkies will get u thro. They have me. I see my friends looking good and getting on in life when it takes all my strength to get up showered and go to work.. I shake more and more i feel the mobility go on the left hand side of mybody. I feel numb. But im still me. I will not give in i will lose the weight ive gained.

On my first visit to this site someone told me. You have parkinsons it does not have you. ......

Court profile image
Court

Be strong and fight it all the way. Always remember you are still you and nothing and no one can ever change that. Find another way to do what you cannot do. Try to find something positive in each day - like a child's giggle, even a rainbow, which I think of as a symbol of hope. There is life after a diagnosis of Parkinsons maybe a different life, but still a life. It will get better, I promise. And always remember You have Parkinsons, it does not have you.

Jash profile image
Jash

Little affirmations help every day. You are stronger than you think you are; never give up.

fishinggirl profile image
fishinggirl

Please remember that depression can be part of Parkinsons. Some of us have been where you are. Feel what you feel but remember there is support out there for you. I don't feel that my Parkinsons is a death sentence, its a life sentence as I live with and learn about it each day. I have to do lots of things differently, can't do some things I used to, but I have learned lots of new things and have new hobbies. I agree with Court, it definitely makes your life different and harder at times but I've now been diagnosed for 5.5 years and life goes on. good luck!

soup profile image
soup

Don't put up with depression, it can be treated.

It's not you that is a failure, has Parkinson's and is depressed, it's Parkinson's that causes depression and makes you think you are a failure (substitute any negative thought in there). Go kill that depression!

landman profile image
landman

We are all grateful for the advances in medicine. As for myself, I am on Azilect, Amantadine, & Neupro Patch. The drug that did the most for movement is Amantadine. I am able to do things that was unable to do before. Like walk and not bounce off walls. I exercise every day to fight PD. Light exercise works well until your brain allows more. Take care all and remember to pray. It works also. Best relief for pain, is pot!

Barbie18 profile image
Barbie18 in reply tolandman

A m i reading this right,you mentioned POT is that what i think it is?one of my sons said he heard that Cannabis was good for PD if so why cant we get it on precription HA HA chance would be a good thing i say.

landman profile image
landman in reply toBarbie18

Yes POT. What state are you in? I am in Nevada & I have a prescrition for POT. I have a state permit for POT.

Barbie18 profile image
Barbie18 in reply tolandman

Hi land man,unfortunatly i am in England and the word POT is taboo as you proberly know.Do think it helps PD i would love to know that my son was right.

landman profile image
landman in reply toBarbie18

POT does help

Joealt profile image
Joealt in reply tolandman

Yes it does.

Dennis profile image
Dennis in reply tolandman

Sure enough. I just moved from Nevada (great state) and was offered POT by the neurologist there. Then a friend learned I have PD and he offered POT. Then we moved to Arizona and my neurologist suggested POT (University of Arizona Medical School) Haven't tried it. But if I knew 100% for sure it would cure Parfkinson's I would be the first one on the bandwagon.

Dennis profile image
Dennis in reply tolandman

Sure seems you have found an answer to kicking parkinson's. Are you still

taking Amantadine? Doing anything else different that you could share.

Do you sleep well at night?. How many hours do you sleep at night. Do

you get any deep sleep? Have you added any other drugs? Finally,

How long does Azliect last? How long does Amantadine last? Thank you

in advance for your answer. ~~~Dennis

landman profile image
landman in reply toDennis

I am still taking Amantadine. Yes I sleep well. I average 2-4 hours a night. I have plenty of energy now. Energy result of exercise. I do not know how long drugs last. I will say forever, because forever is to the end or last.

kuglin5 profile image
kuglin5

Hang in there parkie we are all here for you. Parkinson's is definitely a challenge but you can do it.... live your life to the fullest and enjoy it everyday. Don't be afraid to talk about it with your friends it is not anything to be ashamed about. I am fortunate not to have tremors yet but when my medication is not working my legs feel like rubber. I work in surgery which involves a lot of standing but when I need a break I asked for it when I need to sit I ask for it and so far my coworkers have been very wonderful helping me out. I guess I'm just trying to say life does go on and you can do it we are all there for you.

tlongmire profile image
tlongmire

Welcome! You are not alone now; you have all of us. etterus said it best---you've reached the correct site.

jonroberts profile image
jonroberts

We all have our own ways to deal with PD. I have found being involved in a PD support group is very therapeutic. Group exercise is also helpful. Exercise is something I can control with my fight with Mr. PD. Try and get out of the house every day. Be mobile and interact with PWPs. We understand!

AndyC profile image
AndyC

Hiya :-)

Welcome to our awesome worldwide community. On here you are never alone. Looking forward to your blogs.

Take care

Andy

You are NOT alone.

We are always here.

bott profile image
bott

sorry didn't get back with you putor out being changed over too att. thanks all of you,for your comments.i go from doctor to doctor trying to get help for this awful pain have trouble walking standing sitting always falling down.always in pain 24-7 Does anyone know about a machine like a pacemaker that they put in your brain.???????? and or do they need any takers gennypigs ????? well everybody have a blessed day BOtt

Not what you're looking for?

You may also like...

Alone

I'm having DBS surgery in August. My husband is not supportive at all. In fact he said some so...
BaileyT profile image

I vont to be alone…………

8 years in, DBS on Wednesday. You know you’re sick when you’re actually looking forward to brain...
jeeves19 profile image

Home alone

My husband has gone to London for three days leaving me to fend for myself. He has gone on...

I feel like I am going mad with symptoms

Hi everyone! Not posted on here for a while. Going to try and keep this as short as possible. I...
cocobella profile image

Sometimes I feel like Sisyphus!

Pushing the Rock up the hill then watching it roll past...Ha ha what am I going to do? give up? No...
DeParkiePoet profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.