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New normal

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New normal last won the day on April 3

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About New normal

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    Diagnosed August, 2013. I led a full life before dx. I intend to continue. I hv bn married 47 years, have five children, and 17 grandchildren. I am first generation college grad and earned an MPA with emphasis on international economics.

    Adrenaline is my drug of choice. I ride motorcycles, kayak, swim, and walk in the desert. My goal is to live with PD, not diminish personal relationships.... to leave a legacy of empathy, kindness, honor, dignity....and humor. I hope to serve others while I can...and be remembered for my deeds not my misfortune.

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  1. Hi kay, Thanks for being a good sport about our teasing....ya do have to keep humor going to get thru this stuff. I repeat in all honesty, that you should try to divert your energy toward your wife right now. IF you indeed have PD, she will be at your side for a long time. Cherish the time you have now to help her. Now is the time to love the ones you love. like Fiesty says, it is hard do deal with our own trials, but harder yet to watch our loved ones. Good luck to you....and keep posting. NN
  2. Feisty...a very loud lol.....we needed that. Let's hear from you Kaypeech....i want to know you r ok...a bad intro to the forum...please feel welcome. NN
  3. Murray in answer to your question...MSA is multiple system atrophy. In short, according to our neuro ,when PWP has neg DaT scan, clinically presents with PD, responds to l dopa for some time...AND has orthostatic hypotension...it is more likely than not MSA. This is assuming other autonomic things have gone awry. (Google it) DH has multiple bilateral neuropathies atypical of PD...more typical of MSA. He is progressing quickly. We've applied to VA...have two docs dx of PD...he was 200 yards off shore de militarized zone in Vietnam...no fresh water...used sea water for everything. Probable cause is Agent Orange. I have neg DaT scan. Serious autonomic system weakness with variable BP and orthostatic hypotension. As rare as it can be, neuro says it is more likely than not we both have MSA. He with MSA C.... me, MSA P Discovery Thank you for your response. I prefer to ask questions of the CG's who have seen it all. They have proven to be patient and understanding with we who are underinformed. whenever I feel fear or apprehension, I talk with them, and always feel safe. They have carried a heavier burden than I, and surpass everyone by their kindness. NN
  4. So...with both of us having PD...and likely MSA...our world is changing. Communication is harder. What works for me is having responses already qued up.. instead of "WHAT are you doing!"........I say ......"How can I help you? ". Kinda hides the panic when I see him walking the edge of a building. ""Whaaaat?" Instead....... "I cant hear you." "I have NO idea what you are talking about."......... instead......."That sounds like a good idea." "I did not take your...." instead......"Let me help you look for it." "You've told me that again and again.." instead......" I like to hear your stories" i am serious. Instead of having unkind and frustrating responses, I am creating generic responses all lined up to use...then eventually we get back on track. works for me...what works for you? NN
  5. Serious, Murray....complting things is monumental in our world. Good for you!! NN
  6. Lol...a dry humor... kaypeech u entered yr post several times. Happens to the best of us. For me, there's no problem since I have no memory. I enjoyed reading your post each time. My thought...tend to your wife. Symptoms will evolve til eventually there is little speculation. Focus on your loved ones..you'll be glad u did. we r a really fun group...just as long as we are all on our meds at the same time. Smile.. keep posting Kaypeech.... feel we
  7. Well, where do I go? This topic....bladder control... is commonly discussed in senior circles. Yet, today my heart is heavy after speaking to DH who is 2500 miles away about he wetting his pants while sleeping. This is no big deal..it happens to everyone...senior or not...PWP or not...I get it. I don't need a positive reassurance why this is no big deal. It IS a big deal to DH. My cheering from the sidelines and chanting positive mantras dim while consoling an alpha male. He is at his sister's celebrating his father's 98th birthday. He had a full day of air travel and is tremoring nearly non stop, and has balance issues. I think his relatives are seeing PD in its true form rather than hiding in the shadows of judgement and speculation. I suggested he take additional l dopa as environment dictates. As anyone touched by PD, his voice had a ring of fear....again, my heart is heavy. Repeatedly. I counseled it may just be because of his exhaustion..a fluke.. or it may be something we need to add to the list. DH has deteriorated quickly since his dx March '16. Neurological signs atypical of PD are increasing. I am leaning more in agreement with neuro DH may have MAS P. As we look back he has had atypical neuro symptoms for over 30 years. We can't determine where he is on a timeline. Also, symptoms are reaffirming he may have Agent Orange syndrome which can be the reason for any number of things. So my question to CG's .....is there any correlation between bladder conntrol to any specific timeline of progression? Is it something that can happen at any point in time? Is it a signal? This may be a single episode since he has had an exhausting day of travel. I think I am having a knee jerk reaction to reality....and there is no one I can talk to,,,not friends, family...just had to get it out of my system. Any comments? NN
  8. Genden, please remember you are safe here. We can hear what you hesitate to tell loved ones or friends....yet you need an outlet. You know the CG's here are exceptional with empathy, knowlege and understanding. May the Lord grant you peace and respite. NN
  9. Hi Ospy DH and I take meds during the night . It works for us to maintain steady level. We have no problems. But we take CR continued release. U might want tp see if that makes a difference. we dont take a lot of water..so far it has been ok. Good luck to. Youl NN
  10. Peace I agree with you about stretching. It used to be an option. Now it is a necessity to be mobile. I still highly recommend the exercise ball. We lay on the bed and move the ball with our feet in every direction...and hold stretches. It is key to every day living, to stretch. A nice side note, muscles are building which is a pleasant surprise as I didn't expect from passive exercise. I wonder if the tightening I feel occurs because I DO stretch...it is as if I am holding true rigidity at bay......PD can easily cause one to be self obsessed since the body keeps sending odd signals. I look forward to being on the road with diversions. Tho we r trying to figure out how to take both exercise balls. NN
  11. DH has no sense of smell. He feels texture...like a heavy smoke. Before PD we thought it result of years of welding in ship hulls or years of firefighting. He does smell an awful odor as an aura before a migraine....a neurological thing.
  12. So funny! Having the startle thing is really not funny but it makes others laugh...unless it is DH. I forget he's in the house and jump out of my skin and scream when he enters a room....which makes him jump more. He says he ...or I...will have a sudden death moment if it continues. So now..when I scream I break it into a song that says..."it's not your fault...i know you live here...and you have every right to come i to the room..". I keep singing until he calms down and I calm down...oy! Clerks in stores...even babies near me...it is so,embarrassing....its not a big deal if it brings a smile to someone...which Tom, your story gave me a real lol...thanks for sharing. NN
  13. Hi folks: Stiffness and slowness have now added a new component for me. I stretch with an exercise ball approx 2 hours a day which has kept legs strong and flexible. However, lately, within 24 hours leg muscles get very tight with tendons and fascia stretched to maximum like a rubber band near breaking point. It takes longer to relax with the ball just to get to a beginning point. So I have been researching rigidity...I am not sure I understand the definition. I thought it meant when muscle tone increases so much that bending etc is much harder...yeah, I get that. However, I feel muscles increase tonicity within hours...like the muscles are expanding limited only by skin...crazy...it is the only way to describe it...like a comedy movie where a body swells up and blows away. Yet, there is no humor in this...it feels almost like I soaked in salt water ..the skin is drying and shrinking... while the muscles are expanding... I also have times while sleeping I do a knife like contraction rising off the bed..yeah, I know...who can do that? I've considered it spasicity. So, I ran across this link which is intended for medical students and you have to have a subscription. In the introduction note a 20 minute video explaining the difference between spacitity and rigidity. If I heard right, Dr says rigidity and spasicity normally do not co exist in typical PD. Video is informative or entertaining depending on your mood. Has anyone else had symptoms I so clumsily described? http://www.movementdisorders.org/MDS/Journals/Clinical-Practice-E-Journal-Overview/Clinical-Practice---Volume-2-Issue-2/How-Do-I-Examine-Rigidity-and-Spasticity.htm NN
  14. Good for you, J. Definitely kicking apathy on its rear. Accomplishing/finishing a project is a major achievement in our world. 12 day count down to bucket list trip......Kayak holder on trailer....check! ..... Bass woofer added to new sound system..(1990 van)...check! Tie downs for trike welded...check! Cancel all dr appts for four months......CHECK !!!! LOVE THE ONES YOU LOVE... NN
  15. Genden, i have not been where you are...my thoughts and prayers are with you. I am glad you felt safe to share your feelings. God bless. NN