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Bluemoon

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  1. Bluemoon

    How to plan your own future

    Thanks Miracleseeker!
  2. Bluemoon

    How to plan your own future

    Hi guys, thanks for replying so quickly. I'm not from the States so I'm aware that many things will be different. For instance, I know for a fact that anything related to medications, operations like DBS and such will be covered by the Social Security System at no additional cost (or very little). I also know what I have to do know in order to be covered by disabled benefits in the future, which is basically paying a lot more taxes now, and I'm already doing so. However not everything is well-covered. For example, should I need a personal caregiver, I will have to pay it from my savings since public health cover it very poorly and it's best to access this kind of service through a private insurance company. Or should life in a facility be needed, that'll cost a lot of money since that is not covered at all and it's best to plan it ahead. My question is still relevant since I'm pretty sure that I'm missing lots of things I cannot now think of because I'm in a very early state of the disease, I don't depend on anybody yet and honestly it's difficult for me to imagine what might happen in the future. That's the reason why I've thought that perhaps here more experienced people could give me a few insights in terms of the unexpected realities I might find along the way. For example, the thorough financial planning proposed by Golden01 sounds like something I didn't think of, and I could try & find something similar in my country. Also, knowing which are the approximated expenses associated with physiotherapists, home adaptation, other therapies, or any other thing you have found along the way unexpectedly, would be great. As I mentioned I'm trying to plan in advance as much as I can now so I don't become a great burden to my family in the future. Many thanks!
  3. Hi everyone, I'm a Young Onset PWP and, for the time being, I'm far away from a dependency situation. However I would like to start planning my own future (elder age) so that I don't become a problem to my family. I've already started to pay more taxes so that I can cover a decent invalidation pension if I need it in the future. But I'm thinking that probably it is a good idea to start a savings accounts exclusively for my disease's eventualities. In that sense, I would like to ask you, as caregivers and family, which challenges you've found alongside the process of caring for your beloved PWP. There is a possibility that there is no one to take care of me on a daily basis when I become dependent, so I really need to get everything pretty tight up and planned in advance. Your help is much appreciated. Thank you
  4. Bluemoon

    Pain in the leg

    @Skiing Oh my. I'm relieved to read you yet I'm worried at the same time. So this is how it's going to be from now on. I'll take your exercise advise. The only thing is, it's like I have a window of performance. If I exercise the leg less or more than that window allows, I get the pain back. Too little is bad, too much is worse. Stretching after waking up helps a lot. And coincidentally I had my mercury checked and it is too high. So there's that. I have to say I'm not happy about the idea of living with this pain. I'm only 37! @RNwithPD I'll try to get my vitamin D levels checked, I'm spending the summer by the beach and I doubt it has to do with it, but you never know. Thanks for your reply!
  5. Bluemoon

    Pain in the leg

    Thanks Lad Well, it sounds like you too ended up with an issue that came out of the blue. Can I ask how it started in your case, what was the trigger? How did you realize it was PD related? Thanks again!
  6. Bluemoon

    Official diagnosis today

    Welcome Melissa! I'm 37 so I understand you completely. My diagnosis came as a surprise as I thought my problems were exclusively due to stress. You've been given very good advice, don't delay things and start taking care of yourself. Personally, I think that if you're sleepy during the day you should sleep more at night instead of taking meds to solve it. But everyone has their own reasons. I'm not on any meds yet either because I want to have more children. Take care!
  7. Bluemoon

    Pain in the leg

    Hey guys, I think I'm having a symptom here but I'm not sure what it is or if it’s due to PD. On late June I woke up in the morning with a huge pain on the back of my left leg. Same as if I’d had a cramping during the night, only that I didn't have any cramping. I just woke up like this and could barely walk. First I thought it was due to an excess of physical activity, but days went by and the pain remained and worsened, to the point that I had to stay at home for a week ‘cause I wasn't able to walk at all. In the beginning, the pain was too intense to even think how it worked. But as days went by, I realized that the pain was worse in the morning and that it got a bit better if I moved around. Moving didn't make it go away, but it seemed that my leg was less rigid and painful. Altogether made me think that it was a symptom of PD rather than an injury from physical activity. After a week, the pain went away and I started again with my regular routine. But the pain has come back in the same leg and in the same conditions twice (out of the blue, or apparently), which has made me pay attention to how and when it comes to me. It seems to be related to the type of shoe I'm wearing. if I'm wearing a very flat shoe (like thongs or sandals), it looks like I'm making some strange or unnatural movement when I walk (which I'm not aware of because I don't coordinate correctly while I walk due to PD), and this movement I'm not aware of is causing tension on the muscle of the leg, which ultimately leads to rigidity and pain. Does it make sense at all to any of you? Or am I going nuts? I have to say this has never ever happened to me before. I've always worn thongs and sandals and very flat shoes, and it has never happened to me. This is why I'm thinking it's PD related. Your input will be much appreciated. Thanks!
  8. Bluemoon

    Morning Stiffness?

    Same here, and I'm only 37 and always been physically active [sigh] I started with joint pains when waking up last year, only that I didn't know back then they were due to PD. Now I'm starting to have a lot of stiffness on my left-side leg muscles (my symptoms are on the left side). Like you, my first steps into reality are not pretty, but the good part is that I know it's temporary. I've noticed that, once I get moving, for the most part my pain goes away. I also think it's a good idea to start the day stretching what is stiff and moving what hurts. A 20-minute yoga practice, for example.
  9. Hi Dr, I posted this on the YOPD forum but someone suggested I'd post it here as well. In your opinion, what should a newly diagnosed person ask his or her MDS on their first official appointment? I asked a thousand things but perhaps another person is short of ideas. I think it might come in handy to have a list of things to ask. Thanks!
  10. Bluemoon

    Hand tremor when nervous, anyone else?

    It happens to me too. And I also get a kind of bad hangover when I've been through a stressful situation, like an important meeting, or a disagreement with someone. I find it incresingly difficult to face these kinds of situations, afterwards I just have to rest and close my eyes and calm down. My head hurts, I guess as a result of the stress hormones rush. The pain takes a lot of time to go away. My left side (my bad side) tremors a lot more during these situations. But the worst part for me is what happens afterwards. It's like I'm losing my ability to manage stress successfully - my body no longer can handle it. So I'm working really hard to avoid these situations in the first place.
  11. Bluemoon

    What to ask your MDS on your first visit

    Yes, you're right, I didn't think about it. As far as I know, there is a local PD Association, but I'm pretty sure it's for everyone, not specific for YOPD. Will ask. Thanks Linda!
  12. Bluemoon

    What to ask your MDS on your first visit

    Hi Linda, thanks for your input. It is indeed a good idea to post this in the Ask the Doctor section, will do that. I'm not sure if my MDS is available by email. They did give me a kind of "direct line" to my doctor's team. I can call at any time if I have an issue. Still don't know much about the dynamics of the group since it was my first appointment. But it looked like they were very dedicated to the patients. It was a bit shocking since there was no one my age. And I got to see what my future with PD will look like through other patients in the waiting room. But apart from that, all good
  13. Bluemoon

    What to ask your MDS on your first visit

    LAD, you remembered – thanks for that It went well, I felt very understood and taken care of. I won't start any medication yet since I still want to have kids. I am well emotionally, I asked a thousand questions and my appointment went on for two hours. So it's all good! x
  14. Bluemoon

    What to ask your MDS on your first visit

    Thanks LAD! That's very helpful
  15. Hi everyone! I've been reading you all but haven't written since May. Tomorrow is my first official visit with my MDS, the specialist who will likely take care of me in the long run from now on. I've already got a huge list of things I'd like to ask, but just in case: what do you guys think a newly diagnosed YOPD should ask on their first visit with the specialist? Those things that maybe you don't think about initially but with time you realize they're something you should've ask from the beginning. For example, one of my issues is that I suffer from malign neuroleptic syndrome, an acute condition provoked by a temporary inhibition of dopamine on the brain (such as the one caused by any medicine with metoclopramide on it). One of my questions is how this will affect the possibility of being provided with DBS in the future, since in order to perform the operation, L-dopa meds need to be completely removed in a short period of time, and some people develop life-threatening MNS when this happens. So things like that, important things that you perhaps don't think about asking on your first visit. Thanks in advance for your help!
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