Parkinson's Disease

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Parkinson's Disease
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    Community Voices

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    Community Voices

    Friends, I am thankful to be here now, with all of you, and your presence is a blessing in my life as the leaves change and the nights get cool. Enjoy

    <p>Friends, I am thankful to be here now, with all of you, and your presence is a blessing in my life as the leaves change and the nights get cool. Enjoy</p>
    7 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is MaryAngelaC. I'm here because my husband has just been diagnosed with Parkinson's in May 2022 he is 67. I have never seen any symptoms. He was fine, happy, loving, smart, interesting funny man. I felt blessed to be married to such a great gentleman. He started out that he couldn't sleep and was obsessive about my mom who is 90. We rent from mom. Mom lives downstairs from us. We were preparing to go on our annual Florida trip for the Summer with our 15 year old granddaughter we are raising and adopted. We set camera's in her house and my sister would monitor. If anything bad happened we would fly home. Then hubby had a hard time pooping. Took softeners, drank juices, water, tea's ate xtra fiber everything you could think of. Weeks went by and he said he would go like a poodle once in a while. He ate alot though but lost 30Lbs! GI dr. gave him meds and hubby is doing better in that dept. One night in mid April he felt like he might be having a stroke. His brother brought him to the ER. ER neuro diagnosed him with Parkinson's and gave him meds. We couldn't wrap our heads around that so I made an appt for a movement disorder Neuro. Neuro confirmed and gave him Zoloft to take in the day and Clonapin for sleep. Dr did not agree with Parkinson med the ER dr gave hubby. Lova something? Sorry I am new at this and meds. Hubby is still obsessive. Worries that identity was stolen, leaks are going to happen from a leak we had and got fixed but cracks remained. Doesn't like to go out anymore I gently push him to. He always did all the shopping. Doesn't want to drive he worries he can't. He can, he drives short distances now. Takes him a long time to get it together to go out. Obsessions seems to be taking over his life and mine. Once in a while he has this this overwhelming feeling where he is very uncomfortable in his skin. He can't think straight and arms and legs look like they are going stiff. It last a few minutes and then goes away. We call them episodes and that is what sent him to the ER when he thought he was having a stroke. I think this has happen 4x since the first time in April. Has anyone gone through this? How do I help hubby with obsession's talk him down from them. It's so hard. Has anyone else have obsessions? How long could of hubby have had Parkinsons? He was fine then all of a sudden? Does this disease progress fast. I am scared. Thank you for anything you can share with me. God bless.

    #MightyTogether #parkinson 'sDisease

    2 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is Hounddog. I am honored and blessed to be able to take care of my special needs brother who recently has been diagnosed with Parkinson's Disease. I am his full-time caretaker. He lives with me and I would love to have a greater understanding of Parkinson's Disease so that I may be better equipped to provide him with the best of care.


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    Community Voices

    What helps you cope with gastroparesis?

    <p>What helps you cope with gastroparesis?</p>
    15 people are talking about this
    Community Voices

    What has been the most difficult part of your journey with gastroparesis?

    <p>What has been the most difficult part of your journey with gastroparesis?</p>
    13 people are talking about this

    Explaining Parkinson's Disease to My Children

    How do you tell your kids about a disease like Parkinson’s? “Well, darling, it’s like this: Mummy’s going to get progressively slower at moving, talking, thinking. Falling might be an issue and periodic bouts of choking, falling, and hallucinations. All whilst she’s dancing a jig to no music.” Yeah. My kids were 11 and 15 when I was diagnosed. To a certain extent, it was easier as they knew I had been experiencing some weirdness.” The eldest responded in her eminently practical way and started researching cures…a form of denial? Or perhaps acceptance. It’s hard to say, although there was some knock-on as her studies dipped and she struggled with her relationships for a time. The younger one had a tougher time and still does. It was initially made extra challenging by a teacher telling her I was going to get dementia and lose my memories. My daughter came home distraught, aggravated by my apocalyptic anger. But strangely, this turned out to be positive. It was an opportunity to talk about symptoms, outlook, and the future. The biggest lesson was never to assume anything! Children aren’t in possession of the same knowledge bank as we are: ensure they know it’s not contagious or that you aren’t going to drop dead suddenly. Mine wanted to how I got Parkinson’s. I spent a lot of time reassuring them that it was all manageable and they were not to worry. Mummy would be fine and cope. The truth is I carry gut-ripping guilt that I could be burdening my children with this. This diagnosis is not something they can come along the ride for; no one can. Nor should they. I don’t want them to become my carers. I want to retch when I see the flash of fear as I struggle downstairs, the just-in-case hand at my elbow. The anxious shouts of, “Are you OK?” if they hear the smallest crash from the kitchen. I know they resist asking me to do certain things so as not to worry/tire/stress me. I hate it. I feel like I’ve stolen part of their childhood from them. When I became a mother, I had no idea how hard and at times soul destroying it can be catering to tiny militant egomaniacs. How wearing the repetition of day-to-day parenting truly is. But it is also the best thing I have and will ever do. Those girls and I have been through everything together. We’ve navigated me becoming a single parent and worked as a team, bringing each other up and becoming a force of nature, together. The youngest is 14 and in the throes of monster hormones, biting the hand that feeds and then sobbing uncontrollably that she loves mummy best of all. She has had a period of denying Parkinson’s. Raging once that I don’t look like I have Parkinson’s and how do doctors know I have it? Turns out that she had been Googling and was presented with the usual old, bent man depiction of someone with PD. We need some new imagery. The mistrust of diagnosis is again something she had gleaned from the lack of definitive testing. I’d love to tell her it was just nonsense and I’m fine, just slightly wacky. But it was a wake-up call I had been hiding some of the symptoms and now I had to be honest with her and myself. The bravery and honesty my children show about this disease is the best support and love I could receive. They trust me to cope, or to be honest when I’m not and I trust them to do the same. Perhaps we are in this together after all.

    Community Voices

    What are your favorite gastroparesis-friendly snacks, meals, and drinks?

    <p>What are your favorite gastroparesis-friendly snacks, meals, and drinks?</p>
    6 people are talking about this
    Community Voices
    Community Voices

    More Travel Tips for People with Parkinson's

    Here are some more things to keep in mind as you travel.

    Hats and sunscreen

    I never leave home without at least one hat. Many of them are packable, so take a couple. You can always look chic wherever you go. Don't forget that we are more vulnerable to Melanoma and other skin cancers. Take a good sunscreen with you so you don't have to look for it while you are traveling. My dermatologist recommends Elta MD Broad Spectrum 46 and I have been very happy with it.

    From Carol Clupny, author of The Ribbon of Road Ahead, who just returned from a 67 day trip to Europe:

    Using a walking stick to navigate the cobblestone sidewalks. Oh those cobblestones! I have great stories about wheelchair assistance. And because of the wheelchairs, I did not have any trouble carrying my trekking poles on the plane. I found disability assistance to be very good in Europe.  There are even programs that an individual could access on trains.  I was  boosted up to a back door of  a plane on  a lift in Latvia  and had  a personal  assistant  who took us  through  the  entire  airport  and  even showed us  how  to  buy train tickets in Munich. A small suction cup shower bar. I used it a lot! (note that many come in pairs. You probably need to take just one with you.) Pack light.  Plan clothes to layer. We had only carryon-size roller bags and a backpack each. A drain cover to stop the sink when you are rinsing clothes.  (a great idea for those sinks that won't hold water). Piece of shower line. We were able to buy Sinemet in a pharmacy by only showing the bottle.  (and it was very inexpensive) Be aware of discounts for seniors,  disabilities, and care partners in museums and attractions.   We usually spent less than 50%We happened upon a  9 euro train ticket that allowed us to ride any type of public transportation in Germany (EXCEPT the intercity fast trains) we traveled for two weeks on 9 euros!!!

    More travel tips from Parky Boy from his March blog post.

    Choose luggage that you can cope with – this may have changed Aim to go at the pace that you need, especially when navigating transport hubs – because only you know Control anxiety and stress as much as you can by having everything you need very accessible. This may include Covid pass and locator form, which we’re not used to carrying. Take a few days more medication with you than you need – just in case If you’re flying, take a few days medication in your hand luggage (with, of course, toothbrush and knickers) – just in case. Carry on enjoying enjoying traveling

    Happy Travels!

    #eltamd #carolclupny #parkyboy