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New normal

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New normal last won the day on March 17

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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. Thank you, Christie..
  2. Update: I had planned to talk to our friends without DH....cuz he is very private. I could not bring myself to do something w//out him so invited them to our home. Actually, it helped DH speak about our future. We made plans for each scenario...DH will have assistance if I am in hospital...I will have an advocate at the hospital...and vice versa. They gave us numbers of reliable psychologists, paralegals, attorneys, house keepers, lawn care. I gave them children's contact info. I even mentioned that we would need to fly "home" so select a mortuary that works with airlines. To some, this may be gross...I've learned often there are more than weeds in the details. As they were leaving, a "handy man" came who had been recommeded to help us....perfect for our needs. Admitting DH can't do regular home maintenance was difficult...but once in the open...with a few tears from DH....there is relief in our home. Humility is not a bad thing. It should not be confused with weakness. For some, it takes more strength to admit limited capacity. That same day, we received a letter from VA doctor stating DH has obvious PD related to Agent Orange....a second doctor to affirm DH dx/agent orange. It means the possibility of VA assistance that will help with expenses for our support team. Tomorrow, we go to cardio for options for orthostatic hypotension (OH).. After recording our BP for a month, it is likely both of us may be facing MSA. DH dropped systolic at times 40+... with maximin being 20. I am speaking the worst case scenario.. Obviously, this may prove we have PD only. However, after DH had tilt table test showing OH, our neuro tapped our charts together.."well, looks like you both may have the same dx." So, checking out the river ahead is not wasted time. Thanks for letting me vent...hope to schedule time with counselor.... it is not for everyone...but for we who need to talk it out, it will make my posts shorter...smile... MM, yes, I continue to plan our own future w/out our children's assistance. I'm looking for a couple to serve as caregivers...perhaps living on our property. It is cheaper for us to remain in our home than be in assisted living. Things are moving..or "drifting" fast for us...so I'll also soon look for assisted living homes...to have alternatives...cuz the better ones have waiting lists. Hope these vignettes of my personal life help someone...I know we are not alone...neither are you. Keep swimmin' even when the currents get stronger...(smile) NN
  3. Luke Just for discussion sake...and not to allude to any of your possible diagnoses...Both DH and I have had many system disorders..even some with surgeries..that now can be termed non motor symptoms of PD. All pieces are fitting snugly into a puzzle that has been with us for decades. Your wise dr noticed your history of autonomic dysfunction. You're fortunate to hv an astute dr. After reading your story, I for sure would get PetScan. Note end of quote I posted, that excessive ldopa can accelerate MSA. hmmm. After 3 yrs of dx, I take 50/200 CR 5x's a day. I "break out" 1 to 2 hours after each dosage. I didnt tell dr, cuz I don't want to increase.. Treatment choices might have been different. Alternative treatments like stem cell tx may be more successful in a different part of the brain....which I will ask neuro when I see him. This discussion should not ignite PWP to fear a PD subset or a different dx. We are speaking of SIGNIFICANT non motor autonomic conditions coupled with PD. This is EXTREMELY rare. DH and I have pre PD rare conditions. AND DH is 72..I soon will be 70. Much more likely to have different conditions. Luke, I wish you well...would like to know more about you..and we all appreciate signature lines that state short histories and meds. Pls keep us informed. Apologies if I took yr thread off topic. NN
  4. BTW, swamper...you are right...I thought we had PD just up to a few weeks ago. So I was on the side that DaT scans were not always correct. I am kinda confused now, because PWP with negative scans are numerous...and it would be unusual for them all to have MSA or PD+. As I said earlier...epilepsy at one time was dx of numerous seizure disorders that now can be categorized. Mental illness is now a term for many dimensions. .With research, maybe PD will have additional subsets... which leads us to more definitive avenues for a cure. 😊👍 Hugs to u, Swamper. NN
  5. Hi Luke, My Neuro is suggesting both DH and I may have MSA. Which is rare beyond rare. No Pet scans. However, Dr Google refers to them often so your dr may be on track. I am not a medical professional.. From what I've read, MSA and PD + originate from a different part of the brain than PD with a different process for diminishing l dopa . The fact your dr mentioned it suggests he knows about MSA...pet scans are not commonly ordered. Also, you must present with enough clincal signs for him to suggest it. I've read where brain changes can be noted in pet scans not seen with DaT . it may be an advantage for treatment choices. It will be interesting to know. If u can afford it...if it were me...because there is a lot of difference between MSA and PD...I would want to know. perhaps this info may interest you: from National MSA website "Levodopa may also cause new movement disorders, known as dyskinesias, to appear and has been associated with a lower benefit-to-side effect ratio in MSA compared to Parkinson’s disease3. A comparison study of certain brain wave patterns of Parkinson’s and MSA patients’ response to levodopa showed that MSA patients’ on levodopa displayed a level of function similar to that of unmedicated Parkinson’s disease patients2. In practice, response of MSA patients to levodopa varies widely from patient to patient, leading some experts contend that the actual percentage of patients who benefit from levodopa therapy may be close to 40 to 60 percent among MSA-P patients, with some studies reporting as high as 69 percent, as opposed to the more widely-held belief that most MSA patients are not helped by levodopa therapy4. Levodopa’s usefulness in Parkinsonism is limited due to the fact that the drug’s effectiveness diminishes over time, with each dose gradually lasting a shorter duration5. As a result, symptoms begin to return between doses and, in some patients, dyskinesias appear, usually in the face, neck or limbs. In MSA the decreasing effectiveness of levodopa is compounded by loss of the cells that respond to dopamine as the disease progresses. As a result, benefits of levodopa generally wane after two to three years in most MSA patients compared to five or more years in Parkinson’s disease patients5. High doses of levodopa are also thought to contribute to the disease process in MSA, though at least one preliminary study has found this to be untrue ". Thoughts and prayers to you and your family. NN
  6. Do we remember when "epilepsy" was the umbrella for "seizure disorders." Modern science is now creating subsets for many dx. A point to remember: time lines of progression cannot be correlated with any specific person. Even the "averages" or "mean" cannot, IMHO, be used to determine one's prognosiis. Simply too many variables. Example: both DH & I can recall neuro symptoms for decades before dx. DH has had bilateral trigeminal neuralgia for nearly 30 years with over ten procedures attempting to kill nerves to his brain. Pretty serious stuff...but never associated with PD. Nor with military service in Vietnam war. I had issues 30 years ago with bladder and bowel which fit neatly into PD symptoms. Now we learn probably neither of us have PD. Essentially, DH & I have had pre PD symptoms for nearly 45 years.Therefore, if we calculated prognosis and/or progression, with our true numbers, the progression chart would look much different then the current ones. Am I being clear? With our numbers, prognosis of life time or onset of debilitation could be 70 years. OK, I write this...because I read between the lines of newly dx'd PWP who are reading alot from Dr Google...and trying to make sense of your dx. With that, you want to predict when or if you may be compromised. Trust me...who is the original obsessive researcher..."it don't work." Regardless of the many white papers you digest...you do NOT know your future. No more than you can not predict when you will be hit by a bus. It is what it is. PD can be your enemy or your friend...it is your choice. You can begin each day expecting another symptom to develop...or you can awake with a list of things that may improve the life of another...which has most value? i so "get" what you are experiencing with the new developments...and like me...and many of us...you have a passion to know all there is to know...it is SO normal. However, as one accepts PD as a companion you may not even notice the changes because you will be absorbed in maximizing every day...you will have so many things to accomplish to enlarge your legacy..you have no time to study PD. PD as a companion is like adding weights for your exercise plan...it helps build your strength...and in ensuing years as PD walks beside tou, you will recognize that you see your world in vibrant colors while others fail to see it at all. You cherish the hugs.....sensing every touch...and filing into your favorite memory box...and you laugh at the silly things...and you wind up "dancing as if no one is warching" See what NN can do do a very simple thread???? Lol ...sorry the length and free counsel...and taking things off topic... Move on guys...back to Dat scans...love the effort to bring discussion here...and welcome all of you to the forum...it IS like a family...tho some of,our reunions can get out of hand...but in the end we are of the same herd. (Smile) Love the ones you love, NN BTW, Patrot, Iliked your comment...this new format doesn't note the"likes" ...
  7. I've had 5 DaT scans... all negative. DH (husband) had negative DaT scan. Both of us responded to Gold Standard for PD by a positive reaction to L dopa. Neuro/MDS dx'd DH with "Parkinsonism". He has firm commitment to DaT scans. I asked him, why we had significant PD symptoms, positive response to l dopa...and neg DaT scans. He smiled and said, "Sometimes it takes awhile for the scan to catch up to the disease." ( Or vise versa. ) I thought his answer was silly. He has a great history and a list of achievements including administrating DaT scan departments for Mayo Clinic. I respect his assessment. DH exhibits all PD symptoms but is dx'd "Parkinsonism" likely caused by Agent Orange...an herbicide used in Vietnam to defoliate miles of coastline. He has developed neuropathy in many areas...not typical PD. He has several additional odd diagnoses such as bilateral trigeminal neuralgia which seldom occurs ...like never. So, according to Neuro, DH does not have traditional PD, which explains negative DaT scan. Neuro refers to my dx as "parkinsonism" also. I am developing different symptoms from normal PD. Neuro says it is likely caused from a different part of the brain. I now understand why the term "parkinsonism" is occurring often in medical papers and MDS/neuro offices. . Neuro appears to be correct for both if us. The DaT scan discussion continues. PD is unpredictable, so we never can be certain of anything...including DaT scans.. We all know it is a designer disease....each of us is unique. Most important is to be the best you can be, exercise, find joy in every day...look for ways to help others...and the rest takes care of itself. (Smile) Love the ones you love. NN
  8. Hi guys..(this new format is hard to get used to) (Prepare for long post...for new readers, my husband (DH) and I both have PD) I reread the thread...all new to me again...i appreciate ALL comments. I don't feel alone. This is first day in my life I'm seeking help. Humility is an odd feeling. Mmmm... I sent a note to a couple who is assigned to us as a routine responsibility in our church. At 5 am I texted a request for a private meeting for counsel....I'm reeling that I am actually ready to share beyond a forum of strangers. After 3 weeks of monitoring BP, it appears both DH & I are moving closer to MSA dx. (Let's avoid that discussion right now.) DH is in rapid decline...if I speak truly. Yesterday, while talking to a young man...a vibrant discussion of his life choices....I looked at DH ...he was staring with eyes wide open..tear fluid welling....blinking slowly....resembling MJF when off meds. He responded to me. That image remains with me. Yeaterday, twice...I was told we need to find help. Hmmm...the message has come loud and clear...and I cannot deny such promptings. At what point do we accept...like it or not....that we cannot do this alone? What does it take? Back to my old analogy...kayaking...yeah...we did great last week...on flat water. In the past, we engaged in changing tides...and mild rapids...maybe a bit beyond our capacity. Succeeded...and enjoy bragging about successfully overcoming the "hazards". This is different...our tool box is getting empty....Mind you, I am not complaining..not whining...please know me well enough to trust my assessment...i dont need rah rah's. I need a map with options....I need to vent without judgement...and this forum offers that opportunity. In stage 3 or 4....this instance will come to every PWP......especially to TWO PWP in one house....so I pose these questions for discussion. We have 4 children...far away...with extreme family dynamics. There is NO WAY we can rely on them....or even tell them...We can hire assistant....are we ready for someone to become one with us???and know there is no permanence? Hmmmm.....we have spent 3 years adapting our home with the thought ONE of us would be a care giver.......it would suffice until "the home" is necessary. And our home probably WOULD work now...for awhile...if we have no additional stress. PD, while unpredictable...is still more finite than MSA....IF we DO have MSA....an additonal component is added to equation... So ...I...not we....DH can't deal with these decisions now.....he is overwhelmed....we (I) have to prepare for the worst and continue to pray for the best. Therefore, waiting til final MSA dx is not an option. Final dx of MSA comes at autopsy. Relevant dx comes from observing progression. I am not ok discounting there may be a hazard around a turn in the river. I scope out the course ahead...plan accordingly...and equip with every resource BEFORE I even get in the river. My nature is to be certain I am as prepared as possible...and educated enough to react to the unexpected. I share thoughts at 5 am after a sleepless night JUST in case one PWP relates....if ONE PWP can benefit from an open discussion regarding REAL preparation for our trip in the woods....I hope it benefits someone. I await counsel from the couple who are smarter than I...more objective than I....have same values as I....and see where this leads. To be brutally frank...I've thought of exit strategies in the past. Its in my gene pool. Now, that is not an option. I have moved well beyond that cowardly decision. DH & I are on the same course and I will never let him drift alone. Just gotta try...don't we? Just gotta take that next step regardless of fatigue....and at some point....as hard as it is for some of us...just gotta be humble......and move on even if is leaning a bit on someone's shoulder. Try...just gotta keep trying. Eager to hear your thoughts.😊 NN
  9. We miss you, Linda. We hope and pray things are well with you. You have selflessly strengthened others in spite of your limited energy and challenges from PD. It has not gone unnoticed how much empathy your soul contains. Your work on the forum illustrates the values of Christianity. PWP relate to your message and apply the principles to their individual struggles. May God grant you peace in your heart and assurance of your purpose. We hope to hear from you soon. NN
  10. What a discovery! https://www.trionic.us/en/?_ga=1.152208634.292378529.1490024740 These walkers...several models...are designed for outdoor use...beaches, trails, etc. Made in Sweden. when and if...its on my wish list! Try. Try as hard as you can. Ya just gotta try. 😎 NN
  11. Well said, Papa!
  12. You pry all know this: Parkinson's Disease and Agent Orange - Public Health Veterans Affairs (.gov) › publichealth › ... May 4, 2016 - Veterans who develop Parkinson's disease and were exposed to Agent Orange or other herbicides during military service do not have to prove a connection between their disease and service to be eligible to receive VA health care and disability compensation.
  13. Hi folks. From motorcycles to kayaking! This thread is intended to be frank about evolving stages of PD...but not necessarily negative. So ....we are planning a road trip that contains our "bucket list"....in the past we've trailered our motorcycles and kayaks from our camper van. We've been uncertain if we were able to do that again. Well, i proved "doubting Thomas" wrong by driving Big Blue (our Harley trike that replaced our singles) for two hours last week. It was great and I had full capacity to ride with the wind in my hair, and my trusting DH sitting behind...with a few hugs during the long roadway stretches just making sure I was awake...(smile) Last week we went kayaking first time in years. We were VERY doubtful...so, we hired a retired nurse who also is a professional kayak guide...how great is that?! We not only did great....we did MORE than great!! Unbelievable 2 hours among wispy weeds, palm trees, and dozens of varieties of fowl. We intentionally loaded...unloaded all our gear and boats with no help...did just fine...we both have resting tremor...so lifting and carrying boats worked...wasn't easy, but it worked! We learned a new way to get in and out of the boats...which puts the frosting on the cake! Now, I KNOW this is in stark contrast with the many posts I've shared about symptoms...tests...etc. THAT's precisely why I want people to know it's important to stretch beyond status quo. I still hv symptoms...however, modifying ...adapting...and going a bit slower...we DID it! I really am still not sure just HOW we did it...but it has energized us and brought "hope"... for lack of a better word...back for us. I dont understand it ...I just lived it...when we got home...both of us were exhausted...stayed at home for a week. Soooo, DH ....who literally has been by my side resting nearly all day for weeks...is now drawing plans to modify our trailer to make easier mounting our boats... we have done NOTHING for mos....now.....we are planning....planning for fun....! Take away? Try. Keep trying. With hopes and prayers for all impacted with PD... NN
  14. Update of DH VA application for PD benefits. While DH's ship is not listed in Blue Water ships impacted by Agent Orange, his ship medical records we just received state his injuries occurred IN Vietnam....which is our evidence that he was there. Next hurdle: connecting Agent Orange to his PD.....just got report from our neuro in which he states his PD is most likely caused by Agent Orange. He adds, as substantiation "he has Parkinsons with a negative DaT scan". He stated he had additonal neuropathy...etc that is not common in typical PD. NOTE TO PD VETERANS: we thought getting a doctors report confirming the link from PD to Agent Orange would be difficult. There is a one page report..fill in the blank and check boxes a dr can do in 15 minutes. Amazing! There are three boxes to check mark ....how likely dr feels the neuro condition is from agent orange. With 1. positive To 5. Negative Well NO ONE can say positively PD origin....so our doc said 2. Most likely....then a few more questions about records to check off...and voila! 'Tis,done! We went through AMVETS and happen to get an excellent volunteer to guide us. Our next step to get 100% disability is to submit papers and wait 77 days. Hope this info helps someone. We r especially happy cuz benefits provide extended care relief. BTW: for ones who have discussed the value and merit of dat scans...I guess this is one case where a negative DaT scan is worth its money. (Smile) NN
  15. Hi folks... My posts here are all news to me. I dont remember writng them. Gosh, I write LONG posts! (Smile) I am correct that waters are drifing faster. Short term memory is really increasing. I often dont remember the last sentence in a conversation. When I heard "short term" I thought it meant like "last week"....and "long term" meant like 20 years ago. I never imagined how frustrating it is...and how much it impacts quality of life. I had a comparative cognitive exam. Since my last exam 9 months ago, I am more impaired in the left temporal lobe...which is judgement and executive function. Hmmm, so,what does,that have to do with taking trash to the dishwasher instead of the compactor? (Smile) I joke with DH about silly things I do. And I talk alot about them. So I told DH I will not talk about memory lapses when I finally accept my "New Normal." When PD symptoms first came I was intriqued with how many different sensations the body could create...buzzes, creeping, pain... tremors...etc. Now, I don't even notice physical signs. I'm hoping I will adjust to this challenge the same....accept that I am a bit loonier than before...as I said to DH..."just think of the people who have to drink a bottle of whiskey so they can think like me?? .....and I can get it for free! I am "with it" most of the time...so memory issues are not consuming me....just scaring me. So we are sitting in our comfy chairs watching a documentary on methamphetamine..horribly addicting street drug. A former star athlete and academic scholar, told his story of wasting18 years in horritic addiction. Now, straight for one year is living with his parents...with limited brain function.. With tears, his father told of that time period when he felt relief to hear he was in jail...for then he knew his son was alive. I took DH's hand.."Would you trade our lives with them?" DH could not speak and shook his head "no". May we all be content with our own bag of "stuff" and still have energy to help others along the path. Keep swimmin & love the ones you love... NN