Hey everyone I'm new to this but my dad has had Parkinsons for about 6 years. This year he has rapidly progressed and

[love89]

as his caretaker/daughter I'm having a super hard time does anyone know about support groups?I'm 22 and I really need too get advice from others who are facing some of the same challenges....

[lmbanni]

Hi Love89!! Welcome to this site. I am also a caregiver but to my husband. I don't know of a support group other than this one. Where do you live? USA or the UK or somewhere else? Alot of the people here are from the UK. I think it is sooo neat that we are from everywhere!!

I needed help to questions also and found sooo much help and support here. There are wonderful people here. They are always willing to share their experences and feelings. I am sooo sorry to hear about your father's progression. PD does that to some people. My husband has had it for 8 yrs. now. He also is getting worse and it seems it just starts going that way sooo quickly. He is seeing doctors for DBS surgery. We may do this next month. Do you know about DBS? There are past posts on this site also and you can learn alot just reading through some.

Well Welcome Love89 and I hope you find help here with us!!! God bless you and your dad!!!

Mary

[love89 in reply to lmbanni]

Hi Mary nice to meet you, my name is Laurina I'm from the U.S I go to the doctors with my dad and last week his neurologist recommended DBS its sounds very successful she also recommended my dad to start taking the same pill that Michael J. Fox takes I forgot the name something that starts with "C" but my dad is in fear of the dyskinesia it causes. Right now his PD is so bad he cant walk,eat,shower or really move on his own without constantly falling. I dont know which is better not being able to move...or having dyskinesia and moving too much.....what has convinced you and your husband to consider DBS? My dad at this point is taking ropinirole and he takes them like candy they are no longer working but he refuses to take something stronger we argue constantly about it I dont know what to do he has given up, but I refuse to let him give up hes so much stronger than he knows....

[lmbanni in reply to love89]

Hello Laurina,

I have never seen or heard your name before!! It is nice!! You are a very strong young lady too!! I read your other posts to other replys and it is a very hard situation that you and your family are in. I will keep you in my prayers.

i was wondering how old your dad is? My husband is 62 but I think your dad must be alot younger. My husband has been sick for 8 years. He started the medicine I think you are talking about right away. Sinement. He was not scared of the dyskinesia because we were told by his doctor that it would not start until quite a while after taking it. If he had taken it alot like you say your does the Requipt then it comes on sooner. He needs to take it or something similar. It really does help with the tremors and the leg pain and cramps. It may even help with the balance issues. Tell your dad my husband, Leo has been on it the full 8 years and still does not have the dyskinesia.

He also takes the requipt, and clonazapan, The clonazapan helps with the anxiety. I think all pd people have anxiety. It causes sooo much difficult behavior for my husband. He gets it when he has to be alone or talk on the phone to strangers or make doctor appointments. The pd has affected his voice somewhat and he is overly consious of it. Men and their pride!!! LOL!!

I think some men can be more vain than women!! LOL!!

You asked about the DBS. If his doctor thinks he is a good candidate for it than I hope he considers it!!! We were very scared of it but after doing research we have decided that it can maybe give Leo his life back!!! We are praying for that anyway!!! We watched Youtube videos on it and they were soo encouraging!! Leo's doctor really helped us decide too. He said Leo is in good health other than the PD and that he IS STILL young!!! He and the sergeon both think this!! We met the sergeon just two weeks ago. Our regular neroligist refered him to us. We loved him right away!! He is down to earth and answers our questions and made us feel he is truly caring for his patients.

Maybe your dad needs some other man to talk to about his worries and concerns? Does he go to support groups? My husband does not. He can't bare to see others suffering. He would be willing to talk to your dad on the phone though!! We met another person with PD on this site!!! Her name is Gloria and she lives near San Antonio where we live!!! She comes here for doctor appointments, Her husband is retired and he is her caregiver. They are both very sweet but we don't see them that often. I don't think Leo is that comfortable talking with another woman!!! LOL!! That's ok with me!!!

Maybe it would do your dad and my husband both some good!!

I enjoy talking to people and sharing ideas and hopefully helping each other!! I hope we can become good friends!! You are a wonderful daughter to stay and help your dad Laurina. I know it is very hard for you!! It is hard for all of us but some keep doing it and some don't. There are a few here on the site who have felt the pain of loosing their wives or husbands due to them not being able to hang in there with them through the pd.... I think that is the saddest thing a person can do!!! You are his daughter and that is very different!! If you need to stop caring for your dad I can understand that because it is your dad and not your husband. There are a whole different set of rules in my opinion for husbands and daughters responsibilites. My dad needed help getting into the tub and bathing and I just couldn't do that for him while my sister could. If that is a husband then there is no reason why she shouldn't help with that!! Unless she is sick herself than that is a whole different thing too. Daughters also have a "hero" image of their dads and I think it is very very hard to watch them go down when they are sick. That is why I admire you Laurina!! I just wanted to tell you this!! And wanted to give you these things to think about if you ever get to the point of not being able to do it anymore.

God bless you and your dad!!

Sincerely, Mary

[Carrigan]

Hi and welcome, yes it would help if we knew where you are, I am also a carer for my husband, have you got information from GP, Parkinson's Consulant, Parkinson's Nurse specialist there is help out there occupational therapists physiotherpist, speech therapists. Parkinson's Disease society UK provide lots of leaflets etc usually free. Good luck to you and try take care of yourself too, as you will be stressed from time to time. xx

[love89 in reply to Carrigan]

Hi Carrigan:)nice to meet you, my name is Laurina and I'm from the U.S seems like mostly everyone is from the UK on here, but where I live it seems there's not as much help....my dad has all kinds of nurses, doctors, and specialists in his case its a little more difficult he has PD as well as hepatitis C a liver disease kinda a double whammy. what keeps you from breaking down?if you don't mind me asking.For me sometimes its just too much its so hard everyday it seems I'm slowly losing my dad.

[Carrigan in reply to love89]

Hi Laurina what a lovely name, sorry the support is not as good where you are it should be, people still are very much in the dark and have very little awareness about the disease, hopefull we are striving to change that and as a very recently retired psychiatric nurse I have tried to give staff that awareness in my own area. What stops me breaking down, well I do very often stand back and look at my husband struggling and do shed some tears but he stops me, he is so strong at times and a fighter and I admire this in him. You do learn to cope then things change and you go down again, its like a roller coaster but we manage. You obviously love your dad very much and it is hard to see a lovedone suffer but you are doing the best for him and I am sure knows this . Keep striving, keep blogging it does help and take care xx

[Hidden]

Nice to see a young lady who is caring and compassionate

I see you are in the US. Contact the National Parkinson Foundation they will help you to find help or advice that is local to you.

I hope that leads on to finding the help you require.

Good luck with it all. Remember this site is always open.

[love89 in reply to Hidden]

Thank you friend I will check that out.

[cowmom27]

Hi Love89 and welcome, I was diagnosed in March 2006 at age 60---was able to continue working until Aprill of last year when the increasing fatigue was hindering my ability to meet expectations of my ass't nurse manager/per diem off-shift supervisor positiion. So after a nursing career that spanned 46 yrs I decided to retire. Symptom-wise if I don't overdo I manage well but when I over extend along with lousy sleep habits--well I have rough days , poor balance & feel really tired. As far as support ---this is a WONDERFUL source but search the internet---there is a lot out there. If you reside in The US there's a National Parkinson Assoc., Facebook also posts sites that offer support, there is also a Parkinson's Chatroom online that you can join---hope this helped give you some ideas. GOOD LUCK

[love89 in reply to cowmom27]

Thank you sooo much nursing career?wow thats amazing that has always been my dream. my dad sleeps very poorly most nights he keeps my family and I awake hes very restless. I admire you very much I don't know you but its very obvious that you are a fighter!!God bless stay strong its people like you who give me hope

[jillannf6]

hi love 89

welcome

i havePSP diagnozed dec 2010 and am in the uK

so plz find out as much as you can about pARKINSONS AND join the PARKOINSONS SOCIETY

i go to local meetings of her PARKINSONS ASSOC in the uK which r great

everyone is different in their problems but make you feel special

lol Jill

[love89 in reply to jillannf6]

Thank you very nice to meet you Jill my name is Laurina so you were recently diagnosed how old are you?

[jillannf6 in reply to love89]

hi laurina

i am 66 (going on 26)

but am still her e upright most of the tiem

l live in the Uk in the North west of england

lol Jilll

[love89 in reply to jillannf6]

haha amazing!!thats right your as young as you feel!!

[Hidden]

Welcome Love89! I am a caregiver for my husband who has had PD for 7 years and PD related dementia for a little over a year. It took me some time to figure things out and I am still amazed at what I continue to find especially on this website. Check with your local Parkinson's Foundation in your area as they can give you support and find you a support group in your area. Also make sure you have a good doctor meaning a Movement Specialist. That really made a big difference for us. You also have to take care of yourself so you can take care of your dad. I finally gave in and am now having a caregiver come in once a week for a couple of hours just so I can get out of the house to run errands. She is a young nursing student and is great with my husband. Good luck with your dad and remember we are all here to answer questions and help you in any way that we can.

[love89 in reply to Hidden]

Thank you a home nurse comes every 2 weeks to come check on my dad.Recently my dad was in ICU because of one of his PD medications we almost lost him so ever since hes been out of the hospital I started working nights so I can take care of him during the day. My dream is to be a nurse I went to nursing school for a bit but now I'm home with my dad. I love him so much and have always been Daddy's girl, but my life is at a hault because someone has to take care of him. I feel as though my life is passing me by am I wrong for feeling that way??

[Hidden in reply to love89]

Please don't give up on your dream of becoming a nurse even if it means doing it a little bit at a time. Your dad would want you to follow your dreams and passion. You are not wrong in feeling the way you do - that is normal for a caregiver. It is extremely hard being a caregiver especially if you are young. I also feel like life is passing me by sometimes but I believe things happen for a reason although sometimes I'm not sure I under that reason. Hang in there, love and take care of your dad as well as yourself. This website is fantastic for lifting your spirits, answering your questions and just being there when you are feeling down so please reach out when you need someone. My prayers go out to you and your dad.

[love89 in reply to Hidden]

Thank you God Bless you!:):):)I will never give up! my dad forgets alot of things his nurse thinks he could be developing dementia but when i asked his neurologist she quickly brushed it off so kinda frustrating

[Precious44]

Hello Love89, I am a 68 year old grandma with PD. It is good you found this site, I stumbled on it about a week ago.lol Everyone is very helpful, compassionate, kind, gentle, and caring. How many are there in your family? I can tell you as be a caretaker for a couple cancer patients, Don't forget to take time for your self. You need to be sure you are eating right, getting a good nights sleep and have people to talk to about you feels and frustrations.If I don't catch all the double letters, it's just my PD shaking my hands. I have a 22 year old grandson leaving here, where I live, and I recently had back surgery and he was so sweet,

helpful and caring. It does my heart good to know that there are some young people out there that are caring and compassionate..You can reply to anyone's answer to you, it's up to you, but I know whom ever you talk with they will be helpful,caring,compassionate,kind and genttle. Everyone has given you goood advice, I'm sure it is overwhelming, but we will still be here tommorrow and the nextday and so on, so if you need to ask the same question 2 or 3 times, no problem. Oh, if you have figured it out I tend to write a lot.

Hugs,Hugs,Hugs,

Precious44

[love89 in reply to Precious44]

Hello Precious44 nice to meet you:)I'm so glad I found this site!there are 5 of us but I'm home with my dad till my mom gets home from work at night. I recently started working out just to give me something to do and to be healthy. My thing is I put on a happy face for my family and stay strong for them, but every now and then I can't help but just break down and cry. I bottle every thing up inside its hard to see my dad in pain when he hurts so do I I wish I could take all his pain away. My heart breaks for him this has been a tuff journey but having a dad who is sick has definetly made me stronger and a more well rounded compassionate person. Oh and there are no double letters you type better than me such a pleasure talking to you

[Precious44 in reply to love89]

It is my pleasure to talk with you. My name is Kathy and I live in California, USA. Working out is a good way to relieve stress, running, you can cry while you are running,you can talk to yourself or to God if you so believe. By the time you get back from your run you will have relieved the stress, cried til there are no more tears and have had contact with God or whom you higher power is. Then you can put on a happy face and mean it. I have to tell you I never had a dad so I don't know about that kind of love. It isn't good to bottle things up inside, you'll get a ulcer or get sick, Let it out, Scream into your pillow. You said there is 5 in your family so you,your mom and your dad that's 3 who are the other 2 and were do they fit into this? There is a prayer called the Serenity Prayer: God grand me the serenity

To accept the things I cannot change

Courage to change the things I can

And the wisdom to know the difference

I

I remember when I was going though a really tuff time with my husband I would say this prayer over and over again and cry as I drove home from work. here is another , not a prayer just something to write down and read over and over again til you get it: Just for today I will try to live

through this day only, and not tackle all my problems at once. I can

do something for twelve hours that would appall me if I felt that I

had to keep it up for a lifetime.

another is take it 5 mins at a time. I can do this for 5 mins, when 5 mins are up I can do this for 5 mind.

You seem to be a really sweet young lady, who has been handed a very big task, with out the proper support. Are you covered on your mom's insurance? If you are and you feel it would help you, ask your mom to call and get a therapist for you. With a therapist you can tell them every thing and they don't judge you, they listen and give you ideas to help you handle this task. Just a suggestion, I see one myself.

Guesss I've used enough space for this time.

May you find some peace from all our suggestions.

Hugs,Hugs,Hugs

kathy

[wifeofparky]

Sorry to hear your dad is not doing as well but I am glad he has someone to help him- you. Caregiving is a tough job. As someone suggested, check out the National Parkinson's Foundation for a lot of info. Inquire about a local support group and make sure your dad is seeing a Movement Disorder Specialist- that is a neurologist who specializes in Parkinson's. Hopefully your dad only needs his meds adjusted. Good luck and feel free to come back anytime you need a shoulder to cry on on. We are here for each other.

[love89 in reply to wifeofparky]

Thank you friend

[Musicgal]

Hi there . Can you pm me at [e-mail]

Have had similar with my Dad.

[love89 in reply to Musicgal]

will do

[cowmom27]

Laurina, where abouts in the US are you? I am in western NYS. I hope you will fulfil your dream to become a nurse. You are well on your way having qualities that I feel are VERY important to being a compassionate nurse. #1 ALWAYS advocate for your patients just as you are now for your Dad #2 compassion---you already possess this #3 as far as getting frustrated and crying in private---everyone is entitled to do this--shows you care and I always told my staff that there is no shame crying with a pt, and/or their families. There is no time limits as far as age to pursue this dream------you are only 22 so you have plenty of time and nurses are needed especially with us baby boomers retiring---the need will onlyget bigger. In the meantime read all you can about PD, nursing, etc-----should be able to find old nursing journals at your local library.

How old is your Dad? How long since diagnosis? Does he read inserts that pharmacies enclose with his drugs? Taking meds for PD on a routine schedule is extremely important & taking too much (as you have already found out) can kill or adversely affect the disease and make symptoms worse. Do you or any other family member prepare his meds--put them in medication containers for a week at a time? Something to consider. Feel free to email me at [e-mail]. Keep the faith--you are doing a good job. Gail

[love89 in reply to cowmom27]

Hi Gail I live in Fontana, California. My dad is 54 he was diagnosed with PD at age 48 its been about 6 years now. No he doesn't read the inserts my mom and I do. We have him on a set schedule every morning my mom puts them in a labeled container of what pills to take and at what hour, but my dad feels he should take the pills when he is in pain and needs them, but he his in pain all the time so he takes them to much. Sad to say I always have to hide all his pills from him or else he eats them like candy. Hes always wanting pain pills but mostly his PD medication (ropinorole) his neurologist said only 7 a day every 3 hours but he tries taking them almost every hour and basically throws a tantrumm when I say he can't. So I talked to his neurologist and she added another pill called azilect too help with the PD since hes progressing very fast now. He refuses to take that pill though hes set on only his current PD medication and refuses to take Sinament (I think she said thats the same one Michael J. Fox takes) because of the Dyskinesia it causes so what to do...I just don't know. Thank you Gail I will surley stay in contact with you and also email you! my email is [e-mail]

-Laurina

[larry33b in reply to love89]

Every case is different but I have been on Sinemet an Amantdine for 11 years with no dyskinesia. Why live with these problems when there are drugs that work?

[Hidden]

Hi Love89,

Nice to see you on this site, can your Dad have a look at this site and all the people on here will try to help as much as we can, although we are not medicaly qualified we are here to lend a shoulder to cryon , a friend to talk to and a place where you can let all your feelings and emotions run wild Oh and also have a laugh.

I live in Scotland near Glasgow and have a very good support network and i am sure that you will be able to get the same support althoug it might take a bit of time to find, but some one on this site will help you get what you need.

regards

Al

[love89 in reply to Hidden]

I got him to look at this website yesterday and began reading everyones posts he got soooo excited as I am everyone is amazing on here!and your right no one on here are doctors, but better than doctors going through the same challenges and have awesome advice. Your all so positive and uplifting.Thank you Al and a pleasure to meet you

Laurina

[Hidden in reply to love89]

Laurina,

The pleasure is all mine thanks,#you are a star and a credit to your family,

keep up the good work.

if you have time go on youtube and type in parrninsons a bad night with alan , on there you will see how some times i am not as switched on as i should be

regards

Al

[Hikoi]

Hi Love89

You are amazing in your care and devotion to your Dad. I think you have got an overfill of great information so all i want to add is your Dad sounds depressed which is very common with Parkinson's. Has anyone talked to him about that.

Look after yourself and don't feel guilty if you need time out will you.

All the best.

[love89 in reply to Hikoi]

Yes he talks to his home nurse who comes once every 2 weeks or whenever he needs her. She set him up to talk to a therapist which I think would be great for him but one day hes all for it and the next day he don't want to go. Hes my difficult daddy I love him though.

[cowmom27]

Laurina, Say "hello" to your Dad and welcome him to our 'neighborhood'. Yes I understand about the pain----but be careful as pain meds can react negatively with PD meds---I try to work through my pain--if I am busy I forget about it for awhile. I take Sinemet 25/100mg 2 tabs every 3--4 hours during the day. At bedtime I take Ropinirole ER 8 mg---1 tab and Sinemet ER 50/200 mg 1 tab====this holds me 8-10 hrs. Your Dad was young when diagnosed & still is----I was VERY angry when I was diagnosed but got up 1 morning and told myself 'you can't give it back so you damn well better learn to live with it!!!! I try to find joy in each day, laugh at something stupid I may have done---my philosophy is "I may have PD but it doesn't have me yet!!!~' Firm believer in positive outlook---do I drop things, get frustrated when my feet don't move when I want-you betcha BUT I still can walk, dress myself, cook, clean, drive, watch my grandchildren 2x/week----THOSE are the things I dwell on and thank God that I am able to do so. Would love to 'talk' to your dad if he's interested. Will add you to my email Are you on facebook? Gail

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