The Journey and Partnership

I really enjoy reading the posts on this site, but have hesitated to engage too much. You see - I don't feel that this is MY story. I only get to partake in the journey. My husband was diagnose 4 1/2 year ago. At first it seemed like a death sentence and some ways yes it was. There was a grieving period for both of us. The world before seemed to be whatever we wanted and all of a sudden - not so certain.

He is now 58 1/2 and I am almost 52. Young and old in so many dimensions. My husband considers himself the "fortunate one". He feels that life has more meaning and focus. We are both afraid of what the future means. But - as we research and find clues to how to keep active. We find ways to make the most out of what we can do for others.

Through this site - I have found Aquas therapy, kindred spirits, activity projects (we are going to a boxing workshop in Oct).

We didn't pick this path - but are on it together

12 Replies

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  • hi

    i was dxd with PSP 18 months ago(googel it ro read m blog) and did nto have a agrievign or mournign period but was glad that my problems had a name

    but no meds for it and i am sure i have the slow type as i am sitll here standign (apart form when i fall and am on the lfloor)

    as you say it sia hourney adn none of su has a right ot a logn and healthy life

    lol Jill

    :-)

    p s it si not always easy to be positive and i am n tears when i fall 4/5 times b4 the day ha s reallly started!

  • Jill,

    Trust me - many a tear have been spilt. I didn't mean to in any way want to convey that. I feel that we have been so lucky in many ways with this sad disease. We have been lucky in that we had no idea when first diagnosed what it meant. I said to my husband " hey at least it is not 4th stage cancer nor ALS. Sadly for us - my sister passed away within 2 months of diagnosis with a very rare cancer and a good friend diagnosed with ALS during that same time. Sometime the hand you are dealt with is a royal flush and other times it is nothing. We are dealing with each day and moment.

    Deb

  • All I have to say your husband is a lucky man to have a wife like you !

  • That is very sweet. We just celebrated 25 years together and as I told my husband. Even knowing where our path is now (as scary as it may get). I still choose him. Knowing the possible future.

  • I try to have the same outlook you have but other physical problems with my husband has made the PD more pronounced. It wasn't too bad when he was first diagnosed. The sinemet helped then. But after DVT's and pulmonary emboli, a major fall from a ladder and two surgeries in a 5 year period, it seems to have taken over his body and his spirit. We make the most of his good days and pray for more of them.

  • Sounds so scary to me and I realize I may be there. If you need someone to chat - I am there. (can't always respond immediately) but my goal is always to help.

  • This is my experience. No one could tell i had PD but then the accidents: 2 torn meniscus, torn rotator cuff, torn something in hip, hernia operation and some painful kind of IBD. PD grabs it and runs!!! And an ovarectomy which I think was completely unnecessary. I realize any general anesthesia removed a chunk of my memory. I wonder what all these ladies with many facelifts can remember. :D

  • Lol. Interesting thought regarding facelifts. Maybe the two help to make them feel younger!

  • Thank God for caring spouses like yourself. I do not know what I would do without my Billy!

  • I agree :-)

  • I enjoy reading the blogs or questions from the caregivers. They have the hard job, having PD is not a hard job it is a pain in the a--. I want to be able to write again, I love sending cards to my friends and family. My cousin just had his 70th Birthday, he said he couldn't read his card, another friend I sent a card to for his Birthday said he couldn't read his either and his wife tried to read it for him but couldn't.

    Welcome to this site and to all the wonderful people here, I found this site about 2 weeks ago and I have already experenced the compassion, caring, humor,of the people here and have learned so much more about my PD. Your husband is a lucky man, to have a caring, loving wife. I do not have a husband or boyfriend, I have been alone now for 16 years, I had the most wonderful man in my life and he died. I am alone but don't get me wrong I am not lonely. I have friends and 3 sons, 9 grandchildren and 3 great grandchildren, I can be with them when I want and alone when I want.

    Again welcome oh and I give hugs because I need them

    Hugs,Hugs,Hugs

    Precious44 also known as Kathy

  • Kathy,

    How amazing that your husband made sure that you will never be alone. He left you a great gift of family. Don't hesitate to reach out to chat. Even though I don't have the disease. In reality it owns me now too!

    Deb

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