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New normal

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Everything posted by New normal

  1. 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
  2. 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
  3. 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
  4. 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" ...
  5. 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??
  6. 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
  7. To share..... Awhile ago, I posted "Drifting..." to initiate a conversation regarding cognitive decline. The conversation morphed into a debate whether I was over dramatizing symptoms. Later I made an effort to create a topic for persons entering 3 or 4 stage PD to allow PWP to exchange support, information, and conversation during transition to advanced PD. That site morphed into discussion of what "stage" meant...and then off topic into personal exchanges. When I came to this forum 3 years ago, I was searching for accurate straight forward discussion of the reality of PD. I found great info, friendly people...i called it a "family.". However, as my needs changed, the "family" seemed to leave the dinner table and move on. Pragmatic people openly discuss and prepare for reality. Reality is offensive to some. For those who are interested in the topic and might learn from my experence, I want to report. Regardless of brain exercises, Q 10, cocanut oil and other supplements, daily exercise, devotion to service to others, personal motivation regimens, and removal of stressors, my cognition and reasoning have declined rapidly in the last six months. Readers doubt the assessment because I write proficiently. That reasoning is precisely why I choose to open the discussion again. Some people have cancer eating away their bodies, yet show few symptoms. The brain deteriorates quietly...behind closed doors. It steathily self destructs while outward signs remain normal. Only the individual is aware....and very lonely...with feelings of isolation and grief. We are experiencing the truth...our capacity is lessening.....we are "drifting" away from our former self.....yet have no one who relates. It is a time when an understanding friend is needed to assist the transition. However, few people are willing and brave enough to openly discuss the process. A partial list of my symptoms include short term memory loss, incorrect word substituion, cannot follow directions, short attention span, cannot multi task, cannot follow a narrative...such as a movie or article. I cannot defend or describe the degree of impairment. Cognitive assessments affirm symptoms. And they are life changing. I no longer feel I could safely live independently. However, I still drive while with DH and have no problem with reaction time or reasoning. And I have been able to travel alone by air. Anyone regardless of age or chronic disease will have these symptoms. However, i know there are other forum members further down the path of PD who will relate. They understand ...in spades....what I am describing. When symptoms become transparent...and the deficiencies are exposed to one's world...an entire NEW transition occurrs...begging the need of compassion and understanding. Yesterday, it took over 5 minutes to pay at a grocery store counter using a debit card. A call to DH, patient clerks and fellow customers, and finally tears before I could complete a familiar process. As I left, the following customer said to the clerk, "I understand, we all have mental problems." Ouch. The young carry out woman consoled me and asked if I was ok. "Its just that I remember when I was smart." At that point, I received a message intended just for me. In casual conversation to divert from the situation, I discovered she...at 20 years old...was going to hurry home to make Thanksgiving dinner for her parents...since her mother has mental illness and her father has one arm. She went on to say ahe would have to cook at the neighbors since she could not afford propane this month. Hmmmm...i needed to hear her story. People dont see our baggage...and we dont know what others are carrying. We all have to just survive and hope we leave this place in a better state then we found it...and we have become better people. I know this is long...I have gotten your point. I hope this is helpful to someone. 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
  16. Hi folks: "The brilliant indigo cold waters of Riffe lake...sound of jet skis in the back ground...children laughing..warm wind softly flowing to keep the cold waters tolerable. I loved those times on my floatie. dh tying a rope to my toe so i wouldn't drift out to deep waters....muscles melting into the plastic sun parched mattress as waves rocked me into a yoga mind set....mindfulness...present time consciousness....great memories. I am drifting...with no longer a safety rope to shore....
  17. I am in 3-4 stage PD. A classification based on capacity to function independently. Stage 3-4 is seldom discussed. There are many aspects of 3-4 living. To make it easier for topic search.....and to keep consistent...I suggest labeling posts with a topic including a hash tag. All posts are welcome, of course...structure may make this discussion easier to follow. Suggestions are: # what stage am I in? # cognitive # emotions # daily challenges # medical advances # medical disappointments # tips and tricks.".works for me" # strategy for coping # medication issues # diet and exercise # social issues # legal responsibilities # care givers (CG) feed back and observations # family issues # social issues # lessons learned # hope, inspiration, success stratagies #.venting This are suggestions only. Please contribute ideas ti make this a successful thread. Anyone can develop a new #. This is a huge topic which needs a candid discussion. Personal debates should be avoided....as always, posters need to feel safe and not defensive. Everyone has their "truth" and deserve respect. Advice is welcome. Separating into paragraphs helps persons with concentration issues. Keep in mind, anyone who feels uncomfortable may choose other threads. Truth and reality prepare us for the future. I hope this thread is educational, pragmatic, and inspirational. FYI: common abbreviations are: PD: disease PWP: people with PD CG: care giver Rx: prescription Dx: diagnosis MDS : Movement Disorder Specialist DH & DW: dear husband, dear wife Other abbreviations are found in the sections at beginning of the forum. Hope this post will help some one. NN
  18. Thanks, Christie, I intended to send you a private message because I didn't want to openly engage in specifics. When I attempted that before, the exchange became personal...and at this point I don't need more challenges...I will share openly in hopes my experience will help someone. As I speak, I have a horrendous headache and rapid palpations. BP is 160/98...pulse is 80. I am lying in bed after going to bathroom. In daytime, Standing BP at times goes to 100/70. In the past I have awakened with 260/150 BP. Orthoscpotic tilt table test is extremely positive. 5 sleep studies reflect atypical sleep. Recent one showed no REM, 267 leg movements in 266 minutes, .5x stop breathing. In one of them I stopped breathing for 30 seconds...when I breath it is mostly shallow. O2 averages 80%. I've tried C pacs with little success. Neuro said I need to follow up with pulmonologist and get assisted breathing. I've developed a dry cough that comes for no reason. When I cough, excess saliva comes and it begins a cycle of saliva, choking, coughing True story...I have layed on bed upside down with wash rag in mouth to collect saliva so it would not go down throat. I've since learned acidic juice such ikas pineapple juice will slow down saliva. I've coughed so badly I nearly faint...and have considered calling 911 at times because of the serious choking. In last few weeks, I now have excess saliva pretty much all the time. If I have any physical stress...bump my elbow...etc....excess saliva flows faster. 3 times I have had stroke like episodes. Last one about 6 mos ago, transported by ambulance. I was paralyzed on left side, could not speak but never lost cognitive awareness. No TIA was determined. Each time Ive regained function within 24 hours...this last time, I still have left side weakness, and I dont tremor as much on left. Ive been hospitalized twice in 2 years for severe bladder infection...not UTI.....bladder...last time I was in for 2 weeks...Phoenix hospital finally put me on rare anti biotic IV. I have had bladder problems for years...including interstial cystitis I was hospitalized last year for 10 days for bowel incontinence and had to have catherization. No determined dx. Now, I've lost sensation in bladder...so I retain urine. I make sure I urinate approx every 6 hours to keep from over extending bladder. Have significant bladder pain after urinating..not uretha....bladder. I have had unusual bowel problems for 4 years. I had complete work up at a distinguished hospital which proved, normal. The GI specialist detected a slight tremor in my finger. That was beginning of neurological tx since he sent me to MS specialist. I was dx'd probable MS. Then symptoms went more to PD because I developed more tremor and other PD dominant traits. Now, I have little sensation of urgency of BM, and generally empty complete lower bowel each session. After, I get very weak and generally lay down or rest approx,30 minutes. Dr says that is hypoorthostatic BP based. Last cognitive tests showed increased impairment in front temporal lobe...executive function, completing tasks. I fight apathy and initiation daily. Memory and judgement is deteriorating rapidly. I remember no locations. I don't remember last sentence in a conversation. It appears communication skills are good since I write well. Keep in mind I take approx one -two hour to post...and I keep focused because I can read what I last wrote. I told cog/psych dr, it is as if a file drawer of short words has closed. I retrieve higher level words instead. So I talk to everyone as if I am lecturing academia. Really weird. DH and I both have neg Lyme tests. I'm very aware of lyme. My grandson has rare acute chronic Lyme disease @ 11 yrs old..and son in law has had Lyme disease for 15 years. Terrible experience. In last few months, speech and voice and breathing are changing. My voice goes from normal, soft, hoarse for no reason. Speech is halting and pauses between words is increasing, word substitution is increasing rapidly. I said crotch instead of groin to dr. ( someone may think that is no big desl...it is for me, as I have always been very conscious of words..I was very embarrassed. That simply is not me) I seldom say a sentence now without a word replacement. I have temperature changes...sweating episodes where i have drenched sheets. These symptoms have occurred and worsened in the last 4 years. The pace has quickened. Good news is I still have quick wit and sense of humor. Actually to the point of being annoying. (Which is no surprise to most readers). Yesterday, in a restaurant, I intended to put my back against the door to open it as my hands were full...instead, I leaned against the wall and kept pushing til DH said "i think you've missed your mark..". I laughed so hard cuz it was so silly...me pushimg hard against an existing wall..I give thanks every day for being healthy and still independent. I can keep up with normal daily stuff...house keeping and cooking...but it takes a lot of concentration. I walk indoors without a cane. Christie, if u are still reading...neuro recognizes DaT scans are atypical. With the rapid progression the last few months and the classic PD symptoms, he feels MSA with PD symptoms is most likely. Terms are only relevant to existing situation...pace of disease? It has been 4 years since initial dx...I am now experiencing gross autonomic episodes..and daily activity is affected. L Dopa response? I have increased significantly over 4 years...as symptoms are not responding. I should increase now...but am trying to hold off. I've read in white papers, MSA and PD can exist with negative DaT scans. (After hearing DH's history iof Agent Orange exposure in Viet Nam, Neuro said it explains all DH's atypical symptoms and neg DaT scan.). Which also explains why both of us hv PD. Sorry this is so long...unless one sees total pic, it is hard to understand. I hesitate to share all of this...and believe me, there's more...because it's not so cool to read. I have to say I think exercise is one thing that has helped me...when watching TV or reading I stretch and strengthen legs by using an exercise ball for 2-3 hours. I would love to think neuro and I are mis interpreting my scenario. But one cannot not deny the cards on the table. We discussed options. Dr suggested rx...or recording BP supine and standing for 3'weeks. I chose recording . I,think he is wanting to substantiate my dramatic orthostactic hypo tension. Because all my recent hospitalizations are atypical and difficult to,dx...it is appearing the brain is the perpetrator. I cannot manufacture the episodes...they,are real. Origin is atypical. Neuro says origen of brain dysfunction pry is in lower brain/ upper brain stem which indicates wide range & atypical conditions....AND why Dat scan is negative. L dopa decrease is essentially out of sight. I am grateful I have PWP on the forum who care and understand. I have not told anyone...and DH doesn't know my research. What he DOES know is his observation of my decline...which I generally joke about. Yesterday, I joked about one of my "atypical" actions...and he got teary. "Does it bother you when I joke?" He is a quiet man and keeps much inside....if he doesn't respond , then I know it struck a nerve. "Should I not joke about it any more?" He nodded siilently and took my hand. That is my life now, Christie. It is what it is. I appreciate any of your thoughts, as you are a doctor as well as a patient and have a unique view. I hesitate to get another opinion as I am weary....so very weary of doctors...and the web of mis diagnoses etc...feeling like a lab rat. If it is PD or MSA Pd...the results are virtually the same....I have many other fish to fry at this time. We are planning a road trip of 4 mos this summer with a bucket list in hand. First to Michigan by May...and be on Vancouver Island on shoreline the straits of Juan de Fuca in August for 10 days.. Last week I drove our Harley trike for 2 hours...this week we will try kayaking again with a professional kayaker who is a nurse. If we can do that...it is kayak and motorcycle this summer in a trailer pulled by a small rv van....with a toilet (yay).. our bucket list includes a pontoon fly plane experience somewhere over Puget Sound...a raft trip down the Colorado, and kayaking again in beautiful blue rivers in WA state. Thanks, my friends. NN
  19. Christie, I really respect your opinion...and feel it a compliment that your take time to voice your thoughts. I read some articles thatt MSA often does not respond to DaT scans because...again, as I understand, the uptake of dopamine is different in different parts of the brain. The chemical process in the cerebellar region(? I get the areas mixed up..but at the base of the skull..merging into,the brain stem)is different from the uptake in the place of PD...and that is why MSA impacts organs and autonomic systems as well as motor sklls...sooner than PD.. What I take away from neuro...he strongly suggests I have MS-A because if clinical presentation...and history. Christie,, what tx option is there for any other dx? L dopa works. I am severely symptomatic without it. 90% controlled with it. Lately, I have had a lot of strange autonomic symptoms appear which all appear on differential dx charts....and indicate MSA What do you think a different MDS wd do or find? I really am ok with this..it really doesn't change my life that much. DH and I have a long good bye ahead....,but we are 72 & 70...while we r still,active, we have had a great life. A good,thing...I have bn extremely worried that I may get mean and hateful....in MSA patients, while autonomic systems fail earlier than PD, cognitive skills remain longer. Altho, I dont see that happening. Tell me, C, how you think a new neuro wd help. I have been to several with dx of PD. What is yr understanding of MSA-P as it differs from PD? Again, thanks for yr help. NN
  20. I appreciate the responses...and will address them separately...but Bill struck a chord with me. Bill, I am so like you...I want to know what is ahead...regardless of what it is...I just want to know from the real PWP (people with PD.. That's why I started this thread...cuz the conversation dims when PWP advance. You may notice we put a signature line which states our dx date and meds. As tou read the forum ya kinda get a sense of progression from the poster as it relates to their current meds. Here is a summary of my meds. I am now on 50/200 sinemet 5 x per day. I started on your doseage 2013 for balance and rt side tremor. I take it thruout a 24 hr period. I, personally, like to keep levels evenly balanced and it works for me. I feel little change when I awake...I have good sleep. Meds were increased when I would "break thru" with symptoms about 2 hours before nxt scheduled rx. Your question is kinda like one of the few I asked the neuro....MSA -P ...as I understand it...is pretty similar to PD in many ways...and eventually the dopamine will not help symptoms. So I asked "when I dopa no longer works for me...do I return to all my symptoms? If so, what is available to help the symptoms?" He avoided the topic...and said, "we will deal with that when it comes. Dont think too far ahead. We take it stage by stage." I guess that applies to all of us. So, Bill, keep asking...keep researching...so you can be your own best advocate. You will find PWP are very unique in the disease process and in their own method of management. You will discover a sixth sense that understands your own progress and what works especially for you. As we all say, concemtrate more on what you can do...set positive goals...and maximize your strengths. Exercise...educate....endure...and you soon become an improved version of yourself....trust me...when you make PD your companion rather than your enemy...the world is a better place. Welcome to the forum...and good luck to you...please keep posting. We all learn together. NN
  21. We told Neuro today DH is seeking VA benefits from exposure to Agent Orange, he threw his pen down and said, "That explains it all." DH had negative DaT scan and progresses with parkinonism symptoms with additional polyneuropathy and other symptoms atypical of PD. So, ironically, both of us may be facing MSA (multiple system atrophy). Good luck to you vets. NN
  22. MSA NEURO VISIT: "I've been treating you from the beginning as if you had MSA. We need to watch your progression to determine for sure. Until then we monitor you and treat you as if you have PD and/or MSA.You have every symptom of MSA. The only unknown factors are progression which we are evaluating.And we would not be treating you differently. We will not speculate on stages or future time frames. We just take it a day at a time." Neuro. Additionally he said, " Dat scan will eventually make the differentiation. I told him of road trip we plan for this summer based on our bucket list. He said, "Don't let anything stop you. Do as much as you can as soon as you can." Which is good advice to everyone regardless of PD. Hmmmm, think I need to digest this a bit. That's my story and I am sticking to it. (Smile) Rainy Phoenix...we stopped driving cuz of all the accidents so DH and I are in a room filled with silence as we process all of this. Thanks for the input. I really appreciate it. NN
  23. Thanks, Stump...as I understand LBD can only be verified by autopsy...tho there r docs who say different. Since cog test showed increased impairment in frontal lobe..they suggest I don't have dementia. But it explains my frustration of not being able to process normally.,,,and memory issues. I would guess heavy metal would be most considered because of my personal history...I think that was done early in the game...but will ask Neuro. My grandson has chronic bacterial Lyme's disease at 10 yrs old...horrific for him..so,I,had doc test for,that..negative. Your thought on tumors in ganglia is good suggestion and I will bring it up to neuro. I hesitate to go into autonomic systems affected to not over dramatize...but that is the third leg to the stool. One example......PD has slurred speech predominant. Last few months I have variant strength from soft..to hoarse..and normal.....but now more often than not ..I have halting speech..and pattern is not common in PD but common in MSA. Thanx for the input...I have put this on the shelf now...per usual, I pry am overthinking this...as I,hv sd, it doesnt really matter that much if dx is changed...it is what it is....adapting is defintely a trait of PWP. ???? NN
  24. I appreciate all your responses. I have confidence in neuro. He has an extensive background in MDS. I guess i brought out the subject cuz it is looking more like he is correct...and I am preparing for the worst and hoping for,the best. i think he will pry order another DaT scan and/or MRI. I pry have been on google too much. (Smile) Now that I have satisfied my own curiosity, I will put aside speculation and await Monday's appt. I am prepared for any answer now that I know more. If it is MSA, it is really not much worse than PD for me. I am a senior and have had a great life...I am fortunate. It is far worse to have these diseases when young and with family. The worse case scenario is the symptoms come faster...the end result is the same...just a bit more intense...as I understand it. I posted this mostly for others who are facing similar things...in the hopes they won't feel alone. I have not told DH any info I have learned.....that is why I appreciate the forum so much. It helps to share and discuss...and I have benefitted just kniwing someone else knows. DH is still dealing with VA re:Agent Orange from Viet Nam. For those who do not know..it is an herbicide that was used to defoliate acres and acres of forest. Now that millions of veterans are suffering consequences, the subject is getting more attention. PD is so common, that if you prove you were near shore and have PD symptoms it is presumed it came from agent orange...no more validation. DH was directly off shore from the defoliated area. The Navy has a list of ships that are known to have been docked on shore which automatically puts them on the list for PD. DH has to get ships log to get his ship on list. "Blue water" ships are just now being added to the list of presumed dx. I mention this cuz agent orange could be cause of DH PD....which would explain why he has neg DaT scan. I hope new PWP dont get upset about this thread...no one knows the future...and no one is alike. My experience is individual just to me. However, I have noticed there is no place for advancing PWP to share concerns.....and I maintain that advanced PD should be part of the discussion so research for a cure can get more attention. Always a realist, I am now prepared....L knew there were large black bears on Vancouver island before I nearly hit one with my motorcycle....smile....i knew tides can impact kayaks on open seas which prompted us to hit shore on a "slack tide".... I am grateful I didn't let fear keep me from experiencing some of the best times in my life. If it happens to be a new dx, we can prepare ...chart a revised course...and perhaps avoid some of brisk winds ahead. SOOOOO, Monday, I hope I'll get an idea what is around the corner....and all,this speculation will be for naught...again, thanks for validating my emotions...it just helps so much to talk with people who understand. NN
  25. Thanks, Ellen. Good info. Will talk with neuro. NN