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New normal

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Everything posted by New normal

  1. 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
  2. Thanks, Murray....helps alot
  3. Anyone have rigidty? How did it start? What do you do to keep it from progressing?
  4. Thank you for your reply. Ya know, aging is a transition itself...so many of the things happening could be just getting old. DH is (was) a very strong man and prideful. Now, he has urgency so he must urinate immediately...he would kill me if he knew I was revealing this...but we have learned roadside stops are no longer embarrassing...just a fact of life. We've checked for prostate issues..no problems. carruthers...your thoughts? Did u see urgency occuring before the accidents? Is your DH a senior? Do u think this is PD related? Now, if neuro is right, then this is more,indication of an autonomic system weakening. However, DH's father is 98 and his brother passed at 102 after a day of dancing....so age may have less significance. I really appreciate your input...DH is rapidly deteriorating....and has different symptoms from me...so it seems our world is being consumed with PD while we continue to resist it. Thanx for the support. NN
  5. You are spot on with DH. He has so many things he wants to do..apathy and fatique are his enemies. Thats why we thought we would go on road trip to escape the guilt. Getting one project totally completed is a victory...good for you!
  6. Thanks much for response. Yesterday, DH awoke and could not move. I didn't know if it was stroke or what. Eventually I helped him stand up...but his knees wd not bend for him to walk. I gave him baby aspirin and was going to call 911...but with vigorous massage his legs moved & he could walk after anout 30 minutes. Still we don't know what that was about...it might have just been extreme fatigue cuz he has been working extra hard to go on our "bucket list" road trip. We are now delaying trip and flying to Michigan for grandsons grad. Does rigidity ever act like that? His left hip is very painful and now he is cramping in left leg throughout day. He also stretches daily..mostly cuz he wants to be able to ride his Harley trike (smile).....( we r still fighting...but seem to be working aginst the tide) He has neuropathy in legs ...atypical of PD....which neuro says is likely to agent orange exposure. So guess we will be seeing more "atypical" things. with me, if I stretch with exercise ball everyday for at least 2-3 hours, I awake and can walk pretty easily. Lately, muscles tighten early in day and eventually leg stiffens..and upper thigh tendons hurt like heck to point I have to use cane. Rigidity? it is helpful to know stiffness responds to C/L. I should increase, but am trying hard not. This topic is not discussed much..and research doesn't really define it. Thanks so much for info.
  7. Thanks, Stump. I didn't know if it feels like leg won't move or if there is cramping. I have pain & tightening in tendons in groin area. I stretch for nearly 3 hours a day, but that isnt working as well any more. Now other leg is feeling same way. Without meds both legs get resistant to bend. hard to tell if it just aging or a PD symptom. It seems resistant to stretching exercies now. Just wondering if this is rigidity. best to you NN
  8. Agree w/both. Check w/dr. But generics have a lot of variance. I think if yr doc says u have to have regular, insurance pays. Good luck.
  9. Hi folks.. The forum "family" often share things that work for them. I thought it would be nice to have a single thread devoted to our "tricks" we have discovered peculiar to our situation . This is not intended for people to promote or defend ...just to share..in the hopes some things may help others. I'll go first...and will try keep it short (ya, right) <smile> The first two things that come to mind came from forum members....a caregiver advised me to avoid a lot of struggles of PWP and caregivers is establishing habits. I took that very seriously. Organizing my environment, daily schedule, and sleep patterns have helped me immensely and has reduced stress levels. When the CG's give advice, I listen. Sounds simple..but works. Second, one of our wisest PWP continues to remind us that "acceptance" is the most vital thing we can do. as each day passes and we are aware of change...the skill to accept it..and move on determines if PD is your adversary or if it can become a companion. Life changes when we quit fighting..and begin working with PD...doesn't mean we quit doing everything like exercise and diet etc...but we make life style changes for improving ourselves...not becoming a victim of the dictation of the PD monster. We retain autonomy in that manner..and feel more control. I have lots and lots more...but committed to be brief....now, guys, come forth with your golden "ah hah" moment or your special"cocktail that helped you most so far. Guys??
  10. Hi folks, DH and I recognize our plan of having one help the other has changed since now we both have PD. Having a care giver will be sooner than later. Can anyone give their opinion on our options? I expect us to have full time CG's in 3 years. Up to then, we can get people to do household and outside work. Since I dont know what to expect I would like unput from experienced CG's. Having your experience, would you have changed your decison? My thought is whenever one of us is no longer maintaining normal functions...its time to have medical assistance. These are the options I think we have. Any comments would be appreciated. 1. Go to assisted living. . 2. Hire CG agency. 3. Hire local people ...like retired nurse. 4. Hire a couple to live on site in RV or trailer. DH is progressing rapidly. He is a big man. i cannot assist him. He fell last week and we think he got a minor concussion. I boldly speak about our upcoming "bucket list trip" to keep us making goals. Reality is we don't know if it will happen. i told him today...perhaps we go as far as we can...then call it quits. Kinda like having PD....... NN
  11. Both DH and I have neuropathy pain in our feet and lower legs. DH feet are so painful he can hardly walk. I've ordered hush puppies shoes hoping we can get some orthotics from podiatrist for him. I have pins and needles infeet now spreading up to calves.. his emg showedseveral neuroathies. Like Tom, cold floors feel good. We figure it is another anoyance to steal our focus. good luck to others.....
  12. 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
  13. 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
  14. 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
  15. 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
  16. Serious, Murray....complting things is monumental in our world. Good for you!! NN
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. So....we have plumbers this morning in the front part of the house........I'm in the open shower in master bath.....DH walks in and says "Hi".... I STARTLED so much I thought the end was near! Please show a little sympathy for us startle likely PWP. However, it was an easy and quick way to get laugh of the day out of DH! (Smile) NN you have a startle episode? Please share...or I will look silly. NN
  23. 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.
  24. 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
  25. 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