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    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

    Community Voices

    It’s been a while…

    Just when you think your chronic pain can’t get any worse, it does! A few months back, I began to notice both of my shoulders were becoming very painful. As someone with chronic pain, I tend to ignore pain in my body, chalking it up to “just more pain” that will eventually even out or subside, as pain flares do. Well, this one hasn’t….it’s gotten worse. I now can’t lift my arms and the pain is excruciating. A friend of mine had frozen shoulder and I’m pretty sure that’s what’s going on in both shoulders. I’ve been putting off dealing with this because I’m having surgery next week to have my melanoma removed, and they are also removing lymph nodes to see if the cancer has spread. I can only deal with so much right now! I didn’t want to get started with PT only to have to stop right in the middle because of my surgery, which will affect my left shoulder. I am miserable, not sleeping, completely stressed because of pain and the stress over the cancer, and my depression and anxiety are really messing with my head. I feel very alone right now, but I know people here understand what I’m going through. I’m 54 and have lived with intense pain for over 7 years. Anybody else ever feel like they just can’t take it anymore? I’m so worn out…
    #ChronicPain #ChronicDepression #CPTSD

    10 people are talking about this
    Community Voices

    Sadness and gratitude

    <p>Sadness and gratitude</p>
    7 people are talking about this
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    Community Voices

    #about ME
    IVE FIUGHT melanoma have terrible terrible fibromyalgia , recent yrs system Medicare Drs etc network have failed me
    Daughter about in July

    Day 28 of sick alone new house not unpacked. 3 infection,day 28 weakness ! Total, dehydrated, going down drain fear of unable to wake up in morn! Weight loss
    Instant awful shrink and wrinkles
    Pedialyte 24/7 , food/soup if could
    Dr twice but 28 days and a Wed , so much to do. Can only go to restroom or kitchen bed or couch every day
    Already disabled osteo and other painful bone on bone arthritis back bone spurs FIBRO more..... but live alone INDEPENDANT except few things for aid or delivry store or in house fix... and medications as must. Since 2013 and before , but disability since 2013 after 27 yr career raising family and NOT READY TO STOP BUT HAD TO AFTER EVERYONE KICKED THAT IN MY HEADCYOU MUST! For 2 years prior...... gotta go no djs Deb Debra :) #

    1 person is talking about this
    Mark H.

    We Need Better Sharing of Family Genetic Tests and Risks Information

    As I walked past the bookcase the other day on my way out to the backyard, I glanced over and saw our wedding picture and the urn holding my wife’s ashes next to it. Instantly an enormous wave of grief crashed down upon me that brought me to my knees. “I should not be a widower and solo parent!” I screamed into my hands. My wife was a world-class master educator of elementary school students and a mentor of teachers. She also was my soul mate, muse, creative partner, adventure companion, co-parent, and best friend. We had been nearly inseparable from the moment we met 42 years ago until she died in my arms from triple-negative metastatic breast cancer. The grief of losing her and all that we had done and accomplished in our lives together is nearly unbearable. We had so many grand adventures together. And with so many hopes and dreams we had for our approaching retirement as well as all of our daughter’s future accomplishments and milestones to celebrate, there was so much to look forward to. Now lost to her to a curse called cancer. My wife’s nearly four-year cancer struggle was a nightmare journey through hell for her, for me as her caregiver, and for our daughter. Almost from the moment she found the lump until her last breath, it was one traumatic heartbreaking crisis after another. How truly awful it was is beyond words. But it was all preventable. My wife didn’t have to get cancer. Unfortunately, she was unaware that she had inherited a BRCA2 mutation from her father, which allowed the cancer to develop. Sadly, her father died of metastatic melanoma, a BRCA2-related cancer, years before gene sequencing would have been widely available. But a few years after her father’s death, a male relative developed a rare cancer and this time genetic testing was done. That’s when a germline BRCA2 mutation was confirmed. Tragically, the crucial gene sequencing data, the deadly seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by the relative acutely aware of the family’s mutation. Had my wife known specific details about the mutation possibility, she would have had genetic testing to look for the mutation. Once confirmed, she then would have opted for prophylactic surgery that would have reduced her risk of getting cancer by at least 95%. I do feel that my wife’s cancer struggles and untimely death was the result one relative not having the ability to sit down and explain the cancer risk and urgent need for genetic testing to family members. However, the blame also partly lies in our culture and in healthcare laws. In our culture, openly talking about serious medical issues among friends and family, especially cancer, is uncomfortable to say the least. Even when that information might be life-saving, the need to be medically proactive is poorly communicated, if at all. In addition, current healthcare privacy laws make it difficult for physicians and other medical service providers to share patients’ medical information with others. This puts the burden of sharing life-saving information on the shoulders of often confused and medically illiterate family members. But in the case of hereditary cancer and a genetic mutation, this should never be the case. A germline mutation is not an individual issue. It ceases to be that when it is apparent that other members of the family might carry the mutation and it is potentially life-threatening. This information needs to be effectively shared somehow. Putting numerous family members at risk of a horrible death just to prevent the disclosure of a genetic defect of one individual is ridiculous. To think my daughter and I lost someone so special to a horrible, but preventable cancer because only one person was trusted to comprehend and communicate the serious implications of a short, somewhat vague sentence on a gene sequencing report is excruciatingly painful. Things need to change.

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