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LAD

Helping with parents

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As a young onset person with PD, I have had to help my parents with medical issues recently. I work to have my anxiety not take over when I need to be the daughter and help my parent. So far so good but do I trust myself? 

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Helping parents while you yourself are sick is a tough one: I've been there, done that, couldn't afford the T-shirt since my debit card number had been stolen. 

It stinks, it's a terrible, stressful situation that I am so sorry is happening to you. 

 

That said, if you are comfortable sharing, what are your specific concerns? I know that there are several people on this form who are either having or have had similar situations. At the very least you'll be heard and understood, and you may even find some good advice. I know  the encouragment I received here a year ago was invaluable. And even though I have more responsibility for my mom now than I did then, I feel alot more confident in my abilities now. So what is it specifically that's got you worried?

 

If you were just here to vent and not for advice than disregard the previous paragraph ?. I wish you and your parents the best, and hope things settle down for you soon.

Hang in there

- Feisty

 

Edited by Feisty Folder
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I get symptomatic when I get nervous. I also have anxiety which I keep in check but I'm nervous I'm going to have a full blown panic attack and start to tremor so bad I'll look like I'm having a seizure. 

So far, I've done fine. My siblings and others  worry about me which I hate. At the same time I'm grateful they realize it's hard. I guess I'll just take one day at a time. 

I am afraid of the outcome but also afraid of how I will react to it.

 

I've been part of this forum for awhile so I know it's full of great insights.

Edited by LAD

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I've got no suggestions for managing anxiety it self besides all the things you've probably heard a million times before: take a deep breath, listen to music, blah, blah, blah, blah - I've never found a really great coping strategy, unless you count writing REALLY long posts, which isn't much help in the moment.

 

Stress induced tremors are really annoying, PD gives you a poker face, but then it goes and ruins the act with your hands. I have found a solution or two though -

- my neurologist has approved my making medication adjustments on the fly. If it's going to be a stressful day I take a little extra Sinemet. If something stressful occurs and tremors start I'll take a Sinemet, chew it too bits then chug water to get it working as fast as possible. I don't know what your  medication regimen is and you need to speak with your Dr first, but that stratagey got me through mom's bladder infection in February

- if your main concern is concealing your tremor, I find the bathroom a good place to hide until the Sinemet kicks in. Going for a walk gets me alone and often helps calm things. Ducking behind counters or going for "a nap" I have also used. Admittedly the only person I'm trying to hide them from is my demented mother.

- on the other hand if you're needing the tremor to calm and don't care about being conspicuous then you can use what I call "the neuro exam trick". Move the opposite hand from the one you need to stop tremoring, like at the neurology check-ups. I used this so they could draw blood recently.

 

Worrying the people you love is a double edged sword, on one hand you're grateful they care, on the other you love them back and so want them protected. At least that's how it is for me. 

 

I hope something here helps, and things return to whatever passes for normal soon. 

 

Hang in there

- Feisty

 

 

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Thank you. I don't take sinemet yet. I take an agonist. My dr also let's me tweak my meds. I will look into taking an extra immediate release. 

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We got through the latest health issue and I was able to do what I needed to do for my mom.  I guess something just kicks in and you do what you gottta do:)

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Hi Lad

keep taking care of your parents,great way of forgetting our fate.Or as what Dr.Low famous elixir for the nerves,Do the things we fear and hate to do.As we strengthen our nervous constitution .benefits are mental comfort and inner peace.PD is  what it is but when i visit others much worse off I can laugh at my fate alot easier..

My best to you

john

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I have learned I am not the girl for the ER but I'm good with dr visits and follow ups. So, the many family members that are local will be backup! I'm half Italian so I have lots of them! 

Thanks for the encouragement!

 

LAD

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My mom is Back in the hospital. I didn't faint this time but I did have backup. Playing the which course if treatment do you choose? When did it become the patients job to figure it out? I Know how to be a patient advocate but geez..

crossing my fingers we choose the right one 

 

LAD

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One good thing about PD ... I have access to good neuro doctors. I'm trying to get her into where I go for my PD. 

 

Lad

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I've also learned that hospitals do not carry all meds. My mom had her meds but in her weekly pill case. You should have your original bottles with prescription info so hospital pharmacy can confirm them before you are permitted to take them.

 

LAD

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5 hours ago, LAD said:

I've also learned that hospitals do not carry all meds. My mom had her meds but in her weekly pill case. You should have your original bottles with prescription info so hospital pharmacy can confirm them before you are permitted to take them.

 

LAD

One more suggestion on the medication issue - don't let them tell you they have everything you take and send your personal medication supply home with a friend until you have confirmed it by them  handing the pills to you from their pharmacy. In my first recent hospital admission they repeatedly tried to give me Sinemet in place of carbidopa levodopa extended release, because their system insisted  "they have the same active ingredients" (True but regular Sinemet will make me throw up...) On my second admission my best friend ended up having to bring me FOUR of my medications from home at 10pm after already having been told earlier in the day that they had everything but the C/L ER in the hospital pharmacy and to take the rest of my personal medication supply home (this may be partially explainable by the fact that my surgeon originally planned to discharge me the same day, but still really dumb on that nurses part) . I'd been admitted after midnight the first time so I had already taken those doses at home. So the hard learned lesson was keep your personal medication supply with you until the hospital conclusively proves you won't need it. And if you don't have an aware in care kit go order one right now, they are completely free and an invaluable tool for a parky - every single nurse I handed a information sheet to gave me my C/L within ten minutes of when I usually take them, one of them even got me a supplemental dose within thirty minutes of my requesting one the night my tremors were bad, and she'd had to wake up my surgeon to get orders to do so and then get pharmacy to move their buts, something she was willing to do because she knew it was important for me to be able to function. So don't procrastinate order one from NPF now http://www.parkinson.org/find-help/aware-in-care-kit

 

I keep a few extra things with it-

- liquid thickener since I have swallowing issues and it once took dietary two hours to send thickened liquids to the ER

- snacks I know settle my stomach when I take C/L, obviously ask before eating them

- My filled out copy of Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease (which can also be ordered from NPF) I love this rescorce so much I did a review of it for my blog https://www.dementiapuzzle.com/free-resource-caring-and-coping/

- my phone has the app JABtalk on it, to help me communicate when my speech gets bad, making it extra important that I keep it charged. So a cellphone charger is part of my go bag

Thanks so much LAD for reminding us all of the importance of being ready for hospital trips. I hope your mom feels better soon

 

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I spent last week at the beach with my husband, sons, their girlfriends and my parents. It was an impromptu vacation and went great. My boys have become fine young men - they were helpful and engaged. My middle son even took my dad out on a fishing trip without being asked to do it. As much as I hate my PD, I think it has helped my boys develop empathy for others and realize that time is precious and you should cherish times spent together. At least I'm choosing to believe that?

Hug your kids and grandkids! 

 

LAD

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