Always in a hurry......

[Norma55]

My best friend told me just before my diagnosis that she always thought I was in a hurry.I would just smile and say "life is busy so I've got to stay up with it or it might get left behind".

Then it hit me ,a disease that I know nothing about and does not run in my family. Little by little,my life was being slowed down.First the tremors and freezing up .I got meds for my problems and life was okay again. Next came not sleeping and constipation. Once again meds were given.I was starting to get frustrated with this "PD" thing but I was coping with it. Time was going by at a fast pace I couldn't keep up with. My handwriting had become a lot smaller but I could still read it.I love to journal and have solved many of my problems with pen and paper in the middle of the night. My writing went from small to something even I couldn't read. During all of this frustration I moved in with my daughter and her family.They are all so sweet and comforting to me. My daughter began to help me with my bath and clothing and remain a good mother and wife. She is my primary care giver and has great emotional strength.Finally came the day that broke both of us down, she has to help me with my make-up.That may seem like a small thing to most people but to us it was a turning point. All I could think of was how our roles were reversings . I don't pray for PD to cure itself,I pray that everyone has a caregiver as good as my daughter.Together, we will take whatever PD throws at us, and I do mean US!

[tlongmire]

I pray the same thing. Those of us with wonderful caregivers are truly blessed.

[shasha in reply to tlongmire]

so very true terri xxx

[Hidden]

That is a wonderful post and describes it all very well

I wish you all the best

[jillannf6]

hi

this is a good way of sayign tha tyou do not really wan tthe help tha tis offfere dhyou

i tryh ot eb independent but rely on my(paid)carer to do my hair / put mh earrings /in dry me when showered /wipe my bum clean for me- a lot so the personal thingsi i can no longer do

it si no bad thing ot rely on another person asyou rightly say adn US ar the ones who ha ve to live ewiht htis 24/7

lol JIll

[LBRK in reply to jillannf6]

Hi All- You must remember that the daughter is doing what she wants and needs to do...If you are fortunate enough to have a child or relative who is this caring and giving, please accept and allow them to give and do. It is truly helping both of you. I speak from experience.... all I wanted to do was help my Dad ..and relieve my Mom, his main caregiver, of her stress and heartache. It is a truly desperate situation for all...but the sharing helps all...during the moment and long after the courageous PD patient is gone. Best to all and please have faith to receive all the love and support you need.

[hilarypeta]

I think maybe the hurrying is something we all have in common in pd. the people who recovered naturally had no body there to help them and thought that was an element..we must all try to keep up and add to what we do. Save the helpers for when its absolutely necessary...i put on my make up blurrily ..better like that when you age! I put in most of my earrings myself and ask occasionally for help with harder ones...if you dont use it you lose it is true...of course i do not know what stage you are at.good luck.

[sparkyparky]

Dear Norma

This all sounds very frightening to me. Was this a slow process, or did it happen over a year or so? I know this will be the hardest thing for me, to depend on others for my basic care. I have 3 sons, and only 1 is sensitive to the fact I may not be the "beacon of strength" he described me as in his Mothers' Day card yesterday. How does one prepare for this?

[PatV in reply to sparkyparky]

a year would be incredibly fast! I'm guessing 10 or more year?

[Norma55 in reply to sparkyparky]

This is over a 3 year period,and I don't think anyone can prepare for this.

[Bitbit]

And your daughter is blessed to have your gratitude and love. Many parents take the love of their grown kids for granted or constantly complain that it is not enough. Lucky you two! Hugs.

[driller]

Good Morning from Florida; My wife is my caregiver and best friend.

Good Luck

ERIC

[PatV]

I wish I could live with a family member. One daughter seems to be willing but her husband is not comfortable with it. You're very fortunate. Single living is great when one is mobile. Lonely when not so mobile!

[PatV in reply to PatV]

p.s. Norma, may I ask how long you've had PD and how old you are now? I'm 72 and pwp 10 years now.

[Norma55 in reply to PatV]

I'm 56 years young. My onset was 3 years ago.

[allofatremor]

Hi, Norma55,

Nice to meet you, you have a wonderful daughter, and she must have a very good husband/partner. I have no children, was not blessed I am afraid. My husband has PD only diagnosed about 3 weeks ago, but he has been suffering a lot prior to that. When I read your lovely story, I felt really awful, as my husband is 66, (I am 54), my husband's brother has been in our care for 15yrs, he is mentally handicapped, and is downs syndrome (he is 55) It is so hard especially as we are getting older. The stress at home is unbearable most days, and now my husband needs all the help and support he can get, so things are impossible. Only today I accused my husband of bringing his brother first all the time, and I blame him for all the stress he has caused us and our relationship, I have said I can't cope and his brother will have to go in care, so I can concentrate on keeping him as well as possible, I feel really low now, and I read what your daughter does for you, I feel I am not a nice person, for what I have said, I feel that all my time and energy should be for my husband who I love so much. No matter how guilty I feel. I know in my heart of hearts that my husband will deterioate at a faster pace with the stress involved looking after his brother, our whole life revolves around him, sorry to be a groaner, its nice to know there are such lovely caring people out there xxx

[Norma55 in reply to allofatremor]

Thank you,just don't loose the faith . There may be a magical pill out there somday.

[PatV in reply to allofatremor]

I hope you can get some help. Having a sense of purpose can be motivating, even to a pwp. Hang in there.

[Melodysam1890]

It is very frustrating for sure - after years of late committee meetings, weekend travel for the company, LONG work days and loads work to frequently carry home, PD has slowed down the old body ... These days however, preparing meals, cleaning up the kitchen, making the bed, a little housework, a little laundry and I'm done ... I'm truly grateful for the meds relieving the symptoms ... I'm also truly grateful for a husband of 35 1/2 years who stands beside me and goes before me to do those things I'm too tired to do - he supports me in every way every day ...

[Norma55 in reply to Melodysam1890]

Yea to your husband!!

[Annie81963]

Hi Norma,nice to meet you.How wonderful that you and your daughter are so close.My daughter and I are very close too,and I cherish that.We are best friends,when my husband and I renewed our vows on our 20th anniversary(10 years ago) my daughter was my maid of honor and when she got married in October 2011,i was honored to be her matron of honor!!

It does make life easier knowing that she would be there for me if I did not have my wonderful husband by my side.