gotta change vacation plans

[fishinggirl]

Last night I told my daughter that I've decided to stay home and not participate in our annual grandmother, mother, sisters, daughters, vacation this year. She understood why when I explained to her that my leg cramps, swelling, fatigue, and the stress that comes with vacationing was too much for me this year. But today I have to tell my mother who then will stress out on why I can't go and will take it personally at 80 years old. But I feel that this year I need to think of myself, since last year I went and wished I hadn't. Any advice?

[olpilot]

It is true, you must put you first, no one else does. Just getting older is hard enough, with out the pressure of large events. I do less at 60 now because I' m slower, much more tired, sore an my balance is poor. I've talked to my kids, younges 36 and most understanding, a RN, to rhe oldest 40. They understand. Good luck, take care of you.

[fishinggirl]

Yes, I'm going up to tell mom in a few minutes, she'll be really quiet and when I'm gone, do her complaining to others. But it's the best I can do so they can rearrange accommodations. Wish me luck!

[Koko]

YES It is difficult to explain PD to others. Most of my friends see me when I am at my bast and don't think there is much to this disease. WHen they say "Shes alright just look ast her." I want to jump in and explain my pain, my meds and their affects, my tiredness, etc ...but that can't be done. So know this as you tell your mother. Most doctors don't know much about PD themselves. BE strong and believe in your decision.

I had to cancle a cruise I was going to take as I became very sick, I had lost 30 lbs. in three months and couldn't move. THe cruise ship's insusrance co. is fighting us and doesn't want us to get our ten thousend dollars back! THey say that if I had PD when I bought the ticket why should they give me back my money? My doctors had to write an explanation of PD and how it changes often. IT has now gone into arbitration.

SO if you are planning a cruise be sure to keep that in mind.

Good luck. WHen you know you are right it is easier to explain to others.

[Hidden]

I feel sure if your family love and respect you, they will undertsand why you feel unable to holiday with them.

[CheriH]

fishinggirl, I feel for you and wish you much luck! I hope everything went well with your Mom and other family members. I think deep down inside they understand and only want the best for you; but you will be missed, and they worrry about you. Your cancellation validates their concerns. You have to take care of yourself. I'm sure this was just as hard for you as it was for them.

I'm the type who keeps on truding along not wanting to rock the boat; but I've finally realized that there are times that I have to back off and do what is best for my health.

Take care,

Cheri

[fishinggirl in reply to CheriH]

Me, too. I think its my "middle child syndrome"

[CheriH in reply to fishinggirl]

Well, what about that! I'm the middle child too!

[Carrigan]

Good luck with it all I am sure its the right thing to do and it will maybe help your mum to realise a bit more about the problems you have to face with PD, it always amazes me that family and friends do not always see or realise the complexities of the illness.

[wifeofparky]

I fully understand. I am no longer disappointed when my husband is not up to doing things like he used to. Instead I rejoice when he has a good day and we can do anything at all. We have become very flexible in our plans and do things at the drop of the hat. Our granddaughters and grandson's birthday party is Saturday and he is stressing over whether or not he will be able to go. Right now I told him not to worry. If he gets tired, I can just bring him home. We only live 5 miles away.

[fishinggirl]

I did it. I told my mom and she was very quiet, then tried to tell me some old fashioned remedies for my leg and foot spasms and cramping. After explaining what I've tried for remedies and explaining how PD responds differently, she said my dr should be able to cure it. Explained to her again that the dr is aware and has upped my Sinemet already and I don't want more meds at this time. She didn't understand much of it, she's 80 and set in her ways. She dropped the subject and that was it. But my daughter understood and one of my sister understood, then worried how it affected her for the vacation plans. No word from my other sister. I did offer an alternative suggestion to everyone, why not have a big 80th birthday for my mom at my home, room enough for everyone. We'll see how that goes! Proud of myself for not giving in and doing what is best for me. Usually I just go along with the crowd, less problems that way and life is easier that way. Felt pretty good!

[tlongmire in reply to fishinggirl]

Good for you!!

[BILLYRAY]

GO..I KNOW HOW U FEEL...BUT IT IS ONLY ONCE A YEAR DONOT LET PD WIN...GO FOR IT....

[fishinggirl in reply to BILLYRAY]

My PD doesn't win most days of the year. I am uncomfortable in unknown places and crowds. I am taking care of myself for once. My family isn't the most functional family and stress makes my PD worse. So I'm feeling a little selfish staying home but I am going to the family reunion next weekend and seeing lots of family. What bugs me the most is family watching me to see if I "look" like I have Parkinson's because my symptoms don't show on days my meds are working. Has anyone ever said to anyone out there, "you don't look sick to me? " I always say, "thanks, my meds are working right now" when my feet are hurting, I am having small leg cramps, trying not to tremor, stomach hurting from constipation, trying not to pee my pants,and my insides shaking like jello. My family is also too helpful, try to do everything for me like I'm helpless, even ignore me when I tell them I'll ask when I need help. I know they just do it because they don't know what to do but it makes me feel helpless. I'm ok dealing with this daily but only when I've had some sleep and I never sleep well at a hotel. So I am going to "go for it" and do what I need to do after 4 years with PD doing what everyone else wants. And I'll try real hard not to feel guilty by changing everyone's vacation

[PatV]

Too bad your mom is still in denial about your condition. Mine (age 92) is too.

I know my fondest memories is of having my children all together for a happy family gathering. But I've had to face the fact that it's just not possible right now, and not just because of my issues. My PD is worse and my daughter has a TBI.

Good idea about the birthday party. Hope you can pull it off.

[gran5-]

You've done well, give you a big hug for dealing.!!

Some realizations I've come to recently which have allowed me to be creative in my communication with my family (some might call it fibbing) It is OK for me to leave some info out particularly when it does not impact our interactions. eg had a fender bender, totally not my fault, rearended at a traffic light. It will be repaired before anyone sees it so no need to mention it.

My PD ( and all the other Dxes) goes thru its paces, and I get infections very easily. I am beginning to take it in stride : this is the way my life is evolving. I don't welcome them but I do not get bent out of shspe, either. I will participate in a study if it seems to include me. but I don't hang all my hopes on it I seem to be more accepting ( again NOT welcoming) and therefore I'm happier.

Thanks for listening to my babbling, knowing your ears are out there helps. And now my favorite activity, time for a Nappppppzzzzz.

[fishinggirl in reply to gran5-]

95 degrees and humid in Central Maine today, brutal. Did my outside yard work early and puttered around inside later and even took a nap. Love air conditioning and a well insulated home! Not a bad PD day! Love it when it happens! Hope everyone else had a good for you day!

[Koko]

DOn't go. Be strong and look out for your health because no one else knows your pain, how you feel and your limitations. PD is a disease very few people know anything about (*doctrors included). By listening to your body and doing what it is telling you, you are setting an example for others and teaching those around you about PD. Many of my loved ones don't like it when I can't participate but I have discovered they are usually hte ones that can't accept I am sick and want things to be the way they were. GOOD luck!