Newbie, I'm finding the diagnosis easy to take

My reaction to the diagnosis of having Parkinson's Disease has been surprisingly positive. I think because I've been trying to find out what it is that is making me sick for so long and getting worse each year, I was actually disappoint last year when my testing for MS came back negative because I wanted so much to be taken seriously. I'm so very grateful that the Darb/Levo is working. That horrible constant muscle tenseness that you just can't make go away is now gone. My tremors are much lighter. My achiness is much less. My depression is subsiding and I can honestly say I'm feeling happy right now.

I understand the seriousness of Parkinson's, my Uncle (who is long gone) had it, and I have a first cousin that has it. She was diagnosed 5 years ago. So I'm not deluding myself to thinking this is no big deal because I know it is. BUT...at least now my family can understand why I can't do things and feel like I need to lay down and rest often. They won't think I just don't care anymore about family events because I can't cook Thanksgiving dinner. Maybe now the nurses and receptionists in my GP's office won't give me that "Good God She's Back Again" look.

My attitude for myself --- and I am not saying anyone else should have this attitude if they don't have it --- is that I have lived an active and rewarding life and this is just another phase of life. I lost a son 6 years ago and believe me a Parkinson Diagnosis can't hold a candle to the deep grief and pain of hearing your son is dead.

I'm making reservations for a week vacation with my other son and his wife and 5 grandchildren at Disneyworld. We were planning to go in about 3 years but we just decided to go next year because I don't really know how many years I will be able to do something like that. So I have a year of planning and anticipation to look forward to. I'm happy. Which really surprises me.

What was your experience like when you found out you had PD?

27 Replies

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  • Theresa- I appreciated your post. I also spent a lot of time trying to figure out what was going on, going to different doctors, going to physical therapy. Since I had never gotten old before I thought maybe this is what It's like....horrible! It was such a relief to have something concrete and to get some sympathy and to let myself off the hook, finally! And the meds have made such an amazing difference in how I feel. Before my diagnosis and getting on the meds it was hard to walk a block. Now I can hike again and walk for miles. I've been pretty happy. Maybe later I won't be and it'll get really really hard but I am trying to appreciate what I've got now and enjoy whatever I can. Thanks for sharing!

  • Happy to know I'm not the only one that feels this way. Thanks for the reply.

  • If I can make a suggestion or two I went to Disney World in 2013 with my family. I don't know what your budget is but highly recommend that you stay at the Beach Club it is a short water taxi away from Epcot, MGM studios. it is central in/to the park,

  • Thanks I looked at that one but I got "Party size exceeds max room capacity" for the Beach Club. There will be 8 of use in the Party. We have chosen the Saratoga Treehouse Villa, it is a 3 bedroom villa but it is also a tree house. I think the grandkids will really love that.

  • I am sure they will. Just remember you will have to deal with crowds and a lot of walking. Buy yourself a pair of really good walking shoes (100.00-200.00 $) you will thank me afterwords, and anti anxiety pills if you are prone to freezing. (That you will get from your Dr.)

  • I went last year with three of my grandchildren and my daughter-in-law and I could not agree with your advice more. Last year I was not diagnosed yet. Having a diagnosis will actually make next years trip easier. I plan to rent a motorized scooter this time, and get a DAS pass(Disability Access Service)....that way I won't have to wait on long lines.

  • I copied this from Disney's web site.

    Disability Access Service DAS is intended for Guests whose disability prevents them from waiting in a conventional queue environment. This service allows Guests to schedule a return time that is comparable to the current queue wait for the given attraction. Once a return time is issued, Guests are free to enjoy other theme park offerings such as meeting a Character, grabbing a bite to eat, enjoying entertainment or even visiting another attraction until their listed return time. Return times are valid until redeemed prior to park closing.

  • I was relieved to have an answer...because I knew something bad was deteriorating my body as I could do less and less e very six months...it was noticeable. The meds have definitely helped and I enjoy each day and do as much as i can. I am happy also. We are doing are traveling early/now in our retirement as we do not know what the future may be. My husband is the one who is depressed about it and is seeing a psychologist. The doc recommended anxiety meds for him but he refuses to take them...but he needs them. He is freaked out and can't enjoy life.

  • I know how yours husband feels. You have Parkinson's but your husband is suffering from it and will continue to do so as he watches you slowly go down hill to the point where you may well be unaware of your deterioration, but he will be very aware.

  • My husband doesn't seem to be too upset about it. Hmmmm....... I wonder what that means? I think he is thinking like me, it is better to have some answers and be able to treat the symptoms, than to deteriorate and have the world think you are a hypochondriac.

  • Mine too. He's been fab. Just very practical. If I need a bit of help he offers it but otherwise he just ignores it, which is just the way I like it.

  • At first I was angry and scared. Now it's something I need to not let define me or negatively affect my life. I do the best I can and try to live in the moment.

  • AmmieM,

    Great minds think alike!

  • Laglag I think that is one of the lessons I had to learn but would have preferred an easier way to learn it

  • So glad you are feeling better & happy again. Keep that positive attitude and things will be much better. Some days are tough, but keep those positive thought in mind and it will help. So sorry to hear about your son. I'm sure that weighs heavy on your mind. You sound like a strong woman and that will help you get through this.

    I was scared when first diagnosed, especially going thru a divorce at the time and then a few years later breast cancer, but it has made me a stronger person. When first diagnosed, I used to think that I needed to do as many things as possible because I might not be able to do them in 5 or 10 years, but I try to not think too much about the future, but live in the moment or the near future.

  • Oh Laglag I'm so sorry to hear about your breast cancer. How is that going?

  • It was in Dec. 2008 & I had a double mastectomy but I didn't have to chemo or radiation. This April they thought it might have come back but after 3 biopsies they think it's just scar tissue. They want to check it again in October. Living with PD is tougher than that was, but fortunately I was in an early stage. Thanks for your concern.

  • So now you look like Angelina Jolie right? I know two family members and one friend that are breast cancer survivors. Wishing the best to you Laglag.

  • Close! hehe! Thanks!

  • I felt a certain relief of being able to understand what was happening to me. I also feel grief for the loss of my former self. Think that it takes time to process all the feelings that go with this. My mother had it so it is not something I am not familiar with. She was much older when it worsened. I am in my mid 50's and she was probably closer to 75 when it started to become noticeable. She went undiagnosed for many years.

  • I have heard so many stories about people that have it and also have family members that have it, yet most of the articles say it is not hereditary. I know they say it is questionable whether or not there are some genes that increase your risk, but it sure does seem obvious to me that it is hereditary.

  • I would agree with you . Mother then

    daughter. It is maybe not necessarily hereditary but I would say it can be. It is kind of funny to be told that. Oh sure, just nasty coincidence. I know my kids think of it. They are young and healthy and I only hope that it is not carried through my gene pool.

  • That was my first thought also. It would hurt me so much more to have my son or one of my grandchildren with this...much better it just be me. I'm so sorry to here that your daughter has it, nothing is worse than seeing your child suffer. My heart and prayers goes out to you robdean.

  • oh a miscommunication, I was referring to my mother than I as the daughter. Thankfully.

  • huuuum, maybe it's family cultural practices? diet? does your family eat a lot of carbohydrates, traditionally?

    there's also the environment, coal town or love canal type situations, military bases have caused a lot of illness out here. sometimes it can be the eventual result of not being born vaginally but ceasarianly. that's ackward but you know what I mean.

    you may be lucky, there is promising research on why levodopa stops working, eventually.

  • I think we can rule out environmental. The two relatives that had/has it lived/live in New York City their whole life and I live in a very rural area in Arkansas for the last 26 years. It is possible that diet could be a culprit....our family loves fat and carbs. (Please no lectures).

    It would be lucky for all of us if they find out why levodopa stops working.

  • I was exactly the same! For 3 years I've had all sorts of tests and I know at work they were calling me a hypochondriac. Although shocked at my diagnosis at least I finally know what is wrong and I can treat it.

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