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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. 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
  3. 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
  4. 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
  5. 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
  6. 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??
  7. 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
  8. 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.
  9. 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
  10. 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
  11. 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
  12. 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
  13. DH and I have no trouble,sleeping since we began 3 mg melatonin and 450 mg Valerian Root..I take two, DH takes one. We take them about 1 hour before going to sleep. I sleep well for 6-8 hours. From the forum, I consider that is good. I have read on line melatonin is good for neuro diseases. Valerian root has been taken for hundreds of years for nervous conditions. you can buy it anywhere...grocery stores etc hope this helps NN
  14. Thanks Hawkins. That's kinda what we hope we can do. One foot in front of the other. NN
  15. Hi folks i am so sorry I have two threads...have no idea how that happened...especially when such great info is here. Thank you all for responses. So much to consider. I recognize there are many unknowns. We will know in a few weeks if DH qualifies for VA assistance...but VA is associated with the worst of assisted living. I am not whining"...but watching us both progressing ....compounds our emotions....perhaps we are more vigilant and more aware...perhaps.... Our adult children are submerged in family and work...there is really no way..and they all have been through difficult life changing things...I just cannot imagine having them involved. I can see we have to be flexible. That's why I'm trying hard to learn as much as I can. Where can I go but to you remarkable care givers for the best advice? Thank you so much. NN
  16. Thank u all...how the heck did I get TWO threads? I know I am repeating myself alot...but this is ridiculous...sorry...lol
  17. 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
  18. DH (dear husband)'s feet hurt each day he awakes.. . Since he wears a 13 4E, it gets his attention. Sympathies to you folks. NN
  19. I do not want to engage in political ideology. However, "pay attention" to the words, "lower costs". That term essentially means more regulations on providers. More regs...less providers. Not always the answer we want. Sometimes,you don't want what you pray for. Spoken by a person who has managed a medical fascility for 30 years and worked alot with medicare. Note how many providers are. Refusing medicare patients? Just sayin' NN
  20. Diane and Linda...alot to think about..Also, we will take a major hit on selling this house. It has no mortgage..we thinking it wd b our last home. Never considered having to pay payroll taxes, etc. I have never lived with a common wall...I pry would be like a tiger in a cage...our neuro's suggestion we may have MSA, and DH showing so much PD is another component to consider. Prayer has always helped us. I have found peace and purpose. I am confident things will evolve as intended. Just helps to be able to talk with persons who are objective without the emotional aspect...facing the truth. Thank you. NN
  21. Thank you both for your replies. We invested in this home to be disabled adaptable for me. The desert with no population is 50 feet from the door, yet everything we need is 2 miles away. We love it...thinking we made right decisions to be prepared...ya never know what is ahead...pray for the best and prepare for the worst. Hmmm, this scenario was never thought about. Yes, MS, DH is a big guy..50" shoulders...is not overweight...and still over 200 lbs. His fall made me realize I soon will not be able to help him. We are still in denial and divert from reality by talking about our "bucket list". Gender, what you say is pry what we should do. I'll start looking for one. We have spent the last 4 years in transition and are tired. Changing directions now is hard...but not as,hard as what CG's have been through...nor as hard as PWP with a family at home. Each of us has to keep trying.....and think of others. Thanks for your time. NN
  22. Some of us newbies have been reading the archives and realize there is a huge resource out there that is lying dormant. We see also that there tends to be cycles...the same questions..the same discussions...the same attempt to bring humor to the table. The number who post is grossly disproportionate to those who read. The only really new thing that can be discussed is the journey you all have taken....and not shared. You are all survivors...at whatever stage you are....you have the answers we most seek...what happens next? What is ahead for us? How long did it take you from diagnosis to where you are now? What keeps you going? How best can we prepare? What shd we avoid? What should we never forget? What has helped you most as the disease progresses? Don't hesitate to bring reality to the table. If persons want to live in a bubble of denial...they do not need to read. But there are a lot of us who would REALLY appreciate hearing from you...as long as you neglect to share your story, the further away from the truth we may drift....it does not have to be a pretty picture in order to provide substance to this forum.....please help us. We are all researchers...and no where have I seen any definitive description of the disease pattern stated by those who have lived it. I feel there is a "family" out there we need to meet.....anyone???
  23. LAD How fascinating...Thank you for posting. My grandaughter has a rare genetic disease .."GOIN Hormone POLR 4 H ...hypo mylelin (sp) & hypo dentia." There are fewer than a dozen in the world diagnosed. As I understand, she does not regenerate myelin. She is now 6 years old, but was not expected to live beyond a year. While she went to kindergarden last year and played soccer, this year she displays increasing deterioration. Could her condition relate to these hypotheses? Do you think the deterioration of Ldopa process in PD is anywhere close to the process she has....myelin not reproducing? ... Doctors say it is genetic coding between her parents. She exhibits no PD symptoms. NN
  24. While we all reserve the privilege of discussion, I hope this thread continues to be devoted to the many PWP who hesitate to post or are past posters. The thread gives opportunities for people to reconnect. We are happy Linda has returned and look forward to her participation..No longer a "lurker", thankfully.
  25. Roger is correct. Also, environment and circumstances can make a difference. Now that I know "on" and "off" I change environment to return to "on"...rather than alter medication. Example: DH (husband) and I attended a beautful symphony, which is uncommon. I was so excited, I tremored. Some people take extra l dopa. Tremors don't bother me, so I choose to delay til next dosage knowing my system is reacting...and when we leave, I pry will return to being "on".before my next med ischeduled. Some PWP alter meds even if they anticipate a "trigger". i personally like to keep meds consistent, even to the point of awakening at night to dose. As far as "on and off" ...it is a personal thing. I take 50/200 5x a day...which is getting to the far end of the spectrum. My symptoms are very definable.."on," have few .."off" I have many. I "break thru" about an hour before next scheduled dose...yet, I tolerate symptoms,cuz I don't want to increase meds. Good,luck...welcome to the forum...feel comfortable asking anything and contributing to any thread...that's how we all learn. NN