Family Members of Parkinson patients - Cure Parkinson's

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Family Members of Parkinson patients

Pwill54 profile image
21 Replies

My son has Early Onset Parkinson's. Is there anyone else in the group that are family members? I would love to hear from you and your experiences.

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Pwill54 profile image
Pwill54
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21 Replies
esrob profile image
esrob

My son in law has early onset Parkinson's. My sister-in-law was an early onset and I was diagnosed at the age of 64 after having had a meningioma removed. Oh yes, and my father-in-law was diagnosed with Parkinson's when he was fifty. What I remember of him was that, right to the end he maintained a strong sense of humour. and fun. What really helped him, and his daughter, was the very loving and caring family they had around them who stimulated them and kept them going.

My family do the same for me. We try to make something special of every day.

gazelleuk profile image
gazelleuk

Hi

I'm or was young onset diagnosed at age 38yrs old now about to turn 49yrs old on the 19th of this month

I'm still working full time, care for my husband and young 9 yr old son who is waiting patiently for his 10th birthday on the 29th march

~Have hobby's and care for the parker's family on this forum and another whilst looking after newly diagnosed where I live.

Im having a good belly laugh every day to keep me parkers at bay.

I lost some who used to call themselves friends and 2 sisters who have no love to understand but I have many who would and I do call them family because they have never left me at all. May your heart remain filled with love and you find peace that it isn't your fault. God chose him for his strength

esrob profile image
esrob

You are an inspiration. I'm 75 and still determined to keep my brain running ahead of Parkie. People like you keep the world going.

gazelleuk profile image
gazelleuk in reply toesrob

You like me are an determined person with Parker's, We didn't know it at the time we were diagnosed that we were identified to become teachers so that others could or may want to learn from our attitude and outlook on life in general.

I'd have liked to have been consulted but saying that I guess having 2 professions already though hard work was enough but now being thought of as a person with a 3rd string to my bow by others is praise enough. Thank you for thinking i'm inspirational

Hi I was diagnosed in 2000 with parkinsons. I was 40 but on reflection had it longer.I have refused to let it beat me which in some ways was a mistake because people tend to forget I have it.

Many people ended our friend ship because they thought they would be lumbered with m but they dident realise that I am very independent.I nave been very hurt by a family member who I devoted a lot of time when she was ill but hey ho I dont dwell thanks for letting me have a moan

alanrob profile image
alanrob

I can empathise with you rathcline,my wife decided she didnt want a husband who had PD so she met someone else,i too was there for her when she had health problems,we think that everyone is the same and would do what we do sadly it doesnt work like that.

wifeofparky profile image
wifeofparky in reply toalanrob

I'm sorry your wife felt she wasn't strong enough to stay with you. My husband was diagnosed 5 years ago but in retrospect he had PD for a lot longer. We celebrate our 42nd anniversary in August and I'm not going anywhere. It is not easy and some days I feel I've had enough but I get up the next day and we move on. He's had 3 health crises in the last 4 years and with each one, I ask myself, "What will I do without him?" All marriages have ups and downs and some people are only takers not givers. Hope you find someone who sees beyond the PD to see the real you.

RoDias profile image
RoDias in reply toalanrob

I'm sorry to hear about your wife leaving you. My husband was diagnosed with PD at the age of 57. I would never think about leaving him. I love him dearly and married him with the vow "in sickness and in health". He is at the end of stage 2. I do my best to let him be as independent as possible. I do have to help him with somethings, but I let him ask for that help. I know that as the disease progresses, it will only get worse, but I can't see myself leaving him. We have only been married 10 years. During that 10 years, we have helped each other so much and have grown closer with each day. I was in a very controlling marriage and had to report every movement to my husband. That changed when I met my current husband. He lets me be me. I have grown so much in those 10 years and I can never thank him enough for all he's done for me. I tell him that he may have the disease, but we are in this together and together we can fight it. Stay strong, I know there is someone out there for you who will accept and love you regardless of the fact that you have PD.

alanrob profile image
alanrob in reply toRoDias

Thank you to everyone for their kind words,maybe some day i will meet someone who will be willing to cope with my pd but when i think about it i wouldnt really want to put anyone in that position.

RoDias profile image
RoDias in reply toalanrob

Believe me, if you meet someone and both of your are truly in love with each other, it won't matter.

I am so sorry your wife left you.I have to say my husband is great with me.Its such a sod of an illness people dont realise.I have been told to stop pretending to being ill.That came from my mother.

drew410 profile image
drew410 in reply to

I've got one of them. It's a bit rich coming from a mother who is constantly feigning illness as an attention seeking thingy. Black and kettles come to mind!

'Some mothers do have 'em'. Just turn that around. PITA.

You can choose your friends........relatives are not

PatV profile image
PatV

I guess I've been fortunate because while many bumps in road my family has more or less been supportive. I still live alone and have help once or twice a week. Just yesterday we had a comic scene on the bus because daughter 'yelled' at me on bus not to stand up (with walker) until bus stopped. Passengers all chimed in pro and con. Never a dull in NYC! I make new friends. Glad I shed my husband years before I got PD. To Rathcline I have to laugh because my mom's (91 y.o.) has had a very hard time admitting her children are not PERFECT! :D

Thanks to all who share. It is helpful to read all comments.

cabbagecottage profile image
cabbagecottage

Sounds like you are the same wavelength as me Parkywife .. It was our 54th wedding anniversary yesterday . Not the best one we have spent , but it was together for which I am so grateful for . My husband has other health issues and ia going through a new drug programme review .

Unfortunately he had an extremely bad reaction to Digoxin . It has now been stopped so we are hopeing we are going down the right road now . Taking one day at a time TOGETHER !!!!!

Kat00 profile image
Kat00

I am the daughter of a wonderful father with Parkinsons. Although he was only recently diagnosed, he lost his sense of smell many years ago and the disease has progressed slowly over the years, becoming more and more challenging for him.I am proud of him,.. of his courage, sense of humor and his ability to stay involved in the world around him~ especially in the lives of his wife,his children, his grandchildren and great grandchildren.( no matter how difficult that may be for him at times)

I personally have gotten even closer to my Dad, the more he allows me to share in his thoughts feelings and experiences. You can continue to have a great relationship with your son..listen to him..let him open up to you and don't be afraid to ask him how he feels.....all the best to you...you are not alone!

RoDias profile image
RoDias in reply toKat00

You sound like a wonderful daughter and your father is lucky to have you around.

cindylouwho profile image
cindylouwho

I am 48 and was diagnosed about 1 yr ago. I look back and see that I have had it longer and was mis-diagnosed with anoxic encephelaphia (sp??) 6 months before that. My family is just now starting to understand and be supportive. I am in a nursing home since I am unable to be alone due to frequent falls. I also have many other health problems and mental issues (bipolar) so this was just another layer in the cake..lol. I try to think positively and have faith that God will help me deal with each new day. I am glad to hear of family members who are supportive and sad to hear of those who have left some of us. I lost my dear husband 5 yrs ago but I know that if he were alive today he would be totally supportive. God bless you all.

RoDias profile image
RoDias in reply tocindylouwho

You sound like you have accepted your diagnoses of PD and are trying to move on with your life. I'm sure that God will give you the strength to go through each day. Some days it will be harder than others, but He will be there to help. Hopefully, your family will do all the research and reading possible on PD and be able to understand what you are going through.

JonH profile image
JonH

I keep hearing about stages..can anyone tell me the stages of parkinsons?

Moderator_1 profile image
Moderator_1

JonH

If you put stages in the search box you will find at least 5 recent threads which will give answers to your question.

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