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MurrayPD2 last won the day on June 9

MurrayPD2 had the most liked content!

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About MurrayPD2

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  • Birthday 05/26/1971

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    Biking (if able), home improvement, electronics

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  1. I blamed my back for the longest time
  2. I had same exact thoughts! I thought I wasn't going to make it in older age if this is how it is going to be. Around the same age too.
  3. Have you talked about adding C/L or Amantadine with your doctor? Are you seeing a MDS? I am taking both of those I mentioned. I have a mixture of meds ans supplements that I use. I don't think there is any "average" in YOPD, but there is a limit to your med. I think it is 8mg, but I am not entirely sure. Amantadine helps with the dyskinesia and some shakiness.
  4. I met 4 people in person and know if at least 3 more online. None of them complain about speech or balance, but that is just my experience so far. None of them had an infection, but I did, and I still recommend it. Yes, there are risks, but the QOL can be improved for many.
  5. I am just agreeing that a DatScan is one way to rule some things out. You have already noticed you sound less likely to have PD. I think you have most the answers, but a solution for your shaky hands needs to be address somehow. That is some thing your doctor can work out with you.
  6. Its all about the placement accuracy and programming.
  7. Yes, they did a DatScan on me because of my age. The neurologist said it was pretty much required to diagnose PD at my age. He told me if I was 20 yrs older, he would have no doubt about PD, so he needed to make sure. Brain activity definitely showed the pattern that is known for PD patients, so there was no doubt after that.
  8. It is hard to measure, but it seems the non-motor symptoms started well before that. I know 2008 was a year that I showed significant signs of stress/anxiety with a loss of smell. I think constipation was the first one, 2005 maybe. However, it is hard to point an exact moment in time for those. It can really sneak up on you!
  9. I have an older post that is a quick summary of the last 8 years. Please read
  10. Yeah, it is a blast acting like an old fart before I actually am one. I think it forces us young folk to mature past our age.
  11. Sorry to hear that. that would certainly weaken your body and bring out anything else going on. Thunder was going off and on all morning here.
  12. I started out with postural tremors. If it tried to hold my phone flat with my left hand (which) strained my stiff wrist/arm. It would trigger a tremor. If I tried to put resistance on my pinkie, it would really tremor, but that is a major muscle of the hand. I wasn't swinging my left arm and dragging my left foot. After a while, I couldn't get things out of my left pocket and I started getting urgent needs to urinate. I had trouble tying shoes and buttoning shirts. I became foggy and slow, and very stiff. My left started cramping and curling up during a short walk. This is how progression goes for some, mainly one side and severity increases. If you are only experiencing shaky fingers; count your blessings. My right hand is starting to get a shaky thumb and 1st finger with reaction to stress, but it is still my flexible and dominant side. You won't get a diagnosis here and everyone has their unique story with some common variables. You don't seem to be a "standard PD case", but keep nagging your neurologist to find an answer. If your doctor is not aggressive enough for you, find another one. Best of luck!
  13. I think you would see some type of progression; especially untreated. Within 6 years, I went from getting frustrated to much worse... each year it got stronger. I think it is a similar story to most PWPs. Stress just makes it even worse. In my opinion, you should have the neck looked at. It may clear up a lot of the annoying issues you are describing.
  14. Welcome. I am 46 and I probably started with my significant problems at about 40, probably some minor ones before that. I am glad you found it so early and have time to plan while he can take on diet and exercise. I was un-medicated until I turned 44 and I did ok, but was relieved to find answer by then because things were getting difficult. So, now I am on meds and doing ok. I have 4 kids, and they have managed pretty well with it also. It really affects the whole family in some ways, but everyone understands. So, I know I will be managing ok for a few years on medicine alone because I haven't been on C/L until late 2015. I also started on Neupro; which was great until I had problems with side effects. I was doing it for the same reason you are concerned about. I am now looking at DBS as an option to hopefully reduce the medications and have another tool to fight the natural progression. Even without it, I am able to get on my bike and take short trips with the kids. Things are better for us than they were before, so we have we don't see it as despair, but a chance to do more together than I originally thought possible. You will find there are many options available for him and the path is not as grim as it may seem today.
  15. That is a good way to look at it. I have experienced jerks in my whole abdomen before. Not really painful, just uncontrollable