Parkinson's Disease

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    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.

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

    <p>What are your favorite gastroparesis-friendly snacks, meals, and drinks?</p>
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    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

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    Some Travel Tips for People with Parkinson's

    <p>Some Travel Tips for People with <a href="https://themighty.com/topic/parkinsons-disease/?label=Parkinson's" class="tm-embed-link  tm-autolink health-map" data-id="5b23cea800553f33fe999bf7" data-name="Parkinson's" title="Parkinson's" target="_blank">Parkinson's</a></p>
    Kyle Alexander

    Doctors Failed to Check for Lithium Toxicity and I Nearly Died

    If I could count the number of doctors I have seen, I would be a rich man. My BPD caused me to attach to the doctor I have been seeing and although she made mistake after mistake, she was kind and gentle and genuinely cared about me. In June last year, I had a shock diagnosis of Parkinson’s disease by a specialist in the field brought on by the years of psychiatric medication I had been on. Life got very tough, very quickly. I started to go downhill quite fast and every time I would see my neurologist, he would increase one of the meds I was on and I would just get worse and worse, to the point where I struggled to walk or drink anything without spilling it everywhere. I also started to fall over; in the months from August to June, I had fallen 34 times, requiring stitches in my head, and was covered in bruises. I and my family all put it down to the Parkinson’s getting worse, which was a huge concern for my future. So I had two doctors in the picture, one prescribing lithium for my mental health and one for my Parkinson’s disease. I was taking around 15 tablets a day at that stage. Around the beginning of April, I started getting very forgetful and confused about things like what day it was and whether I had been to appointments or not. I also started to hallucinate about people appearing out of the corner of my eye, and when I would turn they would disappear. I told both of my doctors about all these symptoms and they seemed unperturbed. I also started to lose my eyesight slowly. It became difficult to read anything even with my glasses on. I struggled to read emails and text messages and even went and got stronger glasses, which didn’t help at all. I didn’t understand what was going on, I was so confused and my mind was so jumbled up that everything seemed like some sort of strange dream that I was stuck in. I was forgetting to shower, sometimes for a week at a time, thinking I had had one yesterday and my self-care just went out the window. I continued taking the medication, hoping to god it would help in some way. I will never forget a day when my sister was at my place and I said to her “Michelle, I am going to fall today, I am 100% certain of it.” My legs were shaking uncontrollably and I had a sick feeling in my stomach, because I knew it was going to happen. We sat at the table and had a cup of tea and I got up to go to the bathroom, I only took about 10 steps and yelled to Michelle as I hit the floor. She raced over to me, but there was nothing she could do. It took what seemed like hours to get me up and onto the sofa. She had her kids at home so needed to go, but she got me everything I needed on the coffee table so I didn’t have to get up. By this stage, I was using a walker, so we put that nearby so I could use it to get to my bedroom. I sat in silence after she left, completely in shock at what I had become. As the night progressed, I mostly sat in a haze of confusion. I then decided to just go to bed. It was at this point that things became truly awful. I tried and tried to get up to the walker, but the sofa was too low and I didn’t have the strength in my legs to pull myself up. I panicked; I was literally stuck where I was. I called my sister and told her I couldn’t get off the sofa. I was in so much shock I could barely get the words out. She came over straight away and we tried everything for her to pull me up to the walker but it just didn’t happen. We both didn’t know what to do. She wasn’t strong enough to take my full body weight and it was as if my legs had stopped working entirely. With my head down, I knew there was only one option and that was to crawl on the floor using my upper body strength down and long wooden hallway to my bedroom. I will never forget the look on my sister’s face as she watched me struggle to go a few feet and take a break and then go again and again. I finally made it to my bedroom and with the last breath of energy, pulled myself up onto the bed. In the coming days and weeks, my mental state deteriorated more and more. I can’t remember, but I was acting like a completely different person. I was saying the most incredible things to my family and friends, simply outlandish stories like my stepfather running away with the Queen while my mum was at the shops. My sister came to the house to find me setting up all the chairs in the house for a press conference I had apparently organized. It just got incredibly out of control. Some of the things I can laugh at now, but it is a strange feeling to know I acted so unhinged. Soon enough, my parents and sister made the decision to call an ambulance after a couple of days of complete mayhem. I was taken to the hospital and admitted to the emergency department. They immediately rushed blood tests and it came back that I was experiencing Lithium toxicity. My kidneys were almost failing and the combination of the Parkinson’s medication and the critical level of Lithium in my system was the reason for all of this happening. It turned out later that my Lithium levels had been left off all my blood tests and had not been checked for over a year. The doctor ceased the medication and then made the decision between dialysis or trying first to flush my system. Thankfully, he went for the latter and it slowly started to work. I don’t remember the entire first week in the hospital even though I was conscious and my family visited every day. I was still telling them fanciful stories about the hospital and the special missions I was being given. I finally came to in the second week, wondering what on earth was going on and what had happened. It has been a long and painful recovery since I left the hospital. The space my delirium was taking up has been replaced with depression and severe anxiety. I can’t help but feel like something bad is going to happen. I also feel so many emotions towards the doctors that were involved in putting me there in the first place and the months of torture I went through beforehand. The neurologist treated me like I meant nothing and just kept increasing the medication even though I was clearly getting worse. My GP failed me in a huge way by prescribing me Lithium but never testing the levels. I have felt lost for a very long time. I lost myself for months and now I have lost my faith in the very people who I turned to help me. I am grateful for my physical recovery, but it has come at a huge cost. My medication has been changed but I feel empty and hopeless inside. I usually like to end my articles with something positive, but my message to you all is that if something doesn’t feel right with a doctor or a specialist, don’t think you’re not strong enough to see someone else. I was naive about the Parkinson’s situation because it was such a shock and I was seeing an expert in the field. But looking back, I knew I was getting worse each time I saw him. So I am hitting the restart button and am so far proud that I have managed to write this article, because taking writing away from me was and is one of my worst fears. I’ll keep going, I always do.

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    What’s been your experience with dining out as a disabled person?

    <p>What’s been your experience with dining out as a disabled person?</p>
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    Grieving My Former Self in Life With Parkinson's Disease

    When we are diagnosed with a chronic or degenerative illness, there is often a grieving process that follows. The perception we are robbed of our normalcy and vitality is challenging. It throws into the ring two major issues. Firstly, it reinforces the stereotyped “normal” body versus the perceived defectiveness of an ill or disabled body. Secondly, it contests our right to grieve our loss. Loss implies we are incomplete, vulnerable, and unable to assimilate into the social ideal. Without a functioning body, this ideal becomes unattainable. This “loss” via illness is socially and politically defiant, possibly unsanctioned. When someone dies, the protocol is clear. When someone loses their job, position, or income, it is clear. When someone gets ill with a curable disease, when they recover, they reintegrated into society. But when someone loses function and continues to do so — well, that is a problem. Grieving when no one knows what the “rules” are is uncomfortable. Society struggles to know how to react and governments shun the perceived “burden.” Subsequently, post-diagnosis, we can be denied the support and time to grieve. This leads to an inability to express emotions such as rage and the mobilization that can arise from it. Chronic illness puts us in a holding pattern of suspended grief, anger, loss, and regret. Cultural stereotypes cluster, suffocating the expression of emotional vulnerability. As a result, we maintain the person we should be or used to be instead of the person we are now. By obfuscating our experience, we become the sole custodians of our loss. Our lives and relationships get reshaped by the social imperative for us to be humble, grateful, and unassertive. Frequently, I find myself reassuring others as if it is me who has brought them the bad news. What we need is to trust that others will not be overwhelmed with our feelings. But when your children or partner are struggling to come to terms with your condition, it is hard not to smile and say you are OK. If I laugh and make flippant acceptance of the disease, others will be more comfortable. The difficulty is this can lead to seeking refuge within. After any traumatic loss, we need to reorganize our life story. To encompass this new reality, we need to be allowed to release the ghost of the former self. Releasing our old selves can allow a new life narrative to be created, leading us to move forward. A societal change could make this process much more natural and empowering. Normalizing disability and illness would be a good start. More ramps, bigger loos, railings, etc. (seriously, how many able-bodied folks injure themselves on stairs every year?) These things can benefit everyone instead of capitalist “make money from every square inch” thinking. Speaking as someone with Parkinson’s, I can assure you that slow-moving through the world is far healthier. You have time to enjoy the scenery and chat with people when stopping to rest or wait for my body to co-operate. I’m not denying it’s incredibly challenging at times, but it doesn’t have to be made harder by an unforgiving society. It’s been four years since I was officially diagnosed. Am I still grieving? Oh, hell yeah. But I am growing into this new me. I’m learning how to adapt, how to be kind to myself, and how to swear loudly when Parkinson’s gets too much.

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