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New normal

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Everything posted by New normal

  1. After weeks of challenges, we are finally on the road. IMG_0098.webp
  2. I found a converter..edited post...i cant open it..can you?
  3. So how can i load a pic, i tried sending it as an emial to,get in url mode...didnt work, suggestions?
  4. Good discussion. Like Patrot said it can be good stress...i tremored at a symphony...can't imagine if I had been to a rock concert! I tell grand kids it is my happiness barometer...happier I am, tremor increases...they think it is funny. On a serious note, I have avoided adding meds when stress increases symptoms. Once environment changes, symptoms relax
  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 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, guys, come forth with your golden "ah hah" moment or your special"cocktail that helped you most so far. Guys??
  6. Enjoy. God Bless NN
  7. Kudos to Murray...great post, well said.
  8. I tried to remove this post. I used wrong reference link. Regardless, it is an interesting topic...high level of uric acid and its relationship to PD...sorry guys.
  9.'s_disease Wondering if l dopa causing increase of uric acid relates to bladder infections, joint pain, kidney failure seen commonly in PD
  10. I'm confused. Been fussing with rt leg pain for weeks. 2 90 minute deep tissue massage just on leg. 3 chiro appts. Lots of ice. I get fine...boom it returns. I'm starting to think it is PD trying to find alternative exercises. Anyone have severe contraction of whole leg? saratoris (sp) muscle and calf...knee..and attachments to all muscles. I thought dystonia was in one muscle group...not one total leg. So is this PD?
  11. Quiet still, thanks for your response. Very helpful. Do I have this right? : 1. Rigidity is when a limb will resist movement..even if someone pushes on it. The limb will actually feel it is pushing back. 2. Spasciity is when muscles will contract and seize for a period of time. 3. Stiffness is when it is difficult to move, but it will eventually resolve after exercise. 4.Dyskinesia is when a limb or body part moves in an uncontrollable unnatural way. 5. Dystonia is like an extended cramp. It could be toes curling...or arm bending. Sigh...methinks it is dystonia. I stretch every moment I can. Both shoulders have ratchet sounds. They keep moving as long as I stretch every day. To your suggestion, I am having a 90 minute deep tissue massage tomorrow And resuming water exercise. This could atill be an issue that will resolve itself. So....with PD, the brain misinforms muscles because of dopamine reduction. HOWEVER, we can offset and delay with exercise and alternative therapies. I think I get it. Just don't know how I can control a screaming episode in Walmart when leg goes for a walk by itself! 😳 QS, thanx again. NN
  12. Anyone have rigidty? How did it start? What do you do to keep it from progressing?
  13. Hi PDmanaz, Thank you for your, first, u understand we are all different and few of us are medical professionals. When I joined the forum, I wanted to know how PD evolves...and I wanted true anecdotes. Thru the years, I have learned that one must be very careful interpeting symptoms of others and remedies. However, it is interesting to share info to enlighten...not necessarily solve. I tend to over analyze and over think everything...which is getting more difficult as my "thinker" isnt the same as before. I have learned PWP and especially care givers have life experience not found on Dr Google. To your question, what do you do? When a new symptom arises, I start analyzing...trying to determine if it is PD or not. I am 70, so most aches and pains, cognition, and unusual autonomic things are natural. I research, and "wait it out" to see if it is transient...or if I own it. Now....many PWP will adjust their med regimen according to their symptoms or environment...adding or subtracting doses til symptoms relieve. I don't do that normally. I have at times gotten very symptomatic in an environment I can't change...I will,take a C/L. My first line of defense is change the environment. My thinking: this spasm episode is so off the charts, I know I need intervention. I have to try to identify it before going to MDS as I don't want to mis represent the symptom, and start taking another PD med. So, after all attempts to solve it..the nxt step,is HERE....inquiring of the forum...and look at the great input I have received, PDman (sorry I shortened your name...but it makes me smile), This a long answer, typical of me...but your question brought back memories of pre PD or initial PD.....PD is a huge universe..but soon we all find our tracking...stay with me PDman ( this is gender neurtal)....and lets learn together hopefully we get more discussion. NN
  14. Didi I am sorry you and DH (dear husband) are going through this. Every response you have been given is genuine and true. I can only add in my experience psychiatrists are devoted soley to brain chemistry. After your initial visit, they prescribe medication after a 15 minute assessment based on self/spouse observation. I knew at PD onset eventually brain chemistry would be an issue. I searched carefully for a psychiatrist who was conservative in prescribing, experienced enough to use time tested rx, and who had a thorough understanding of interactions among drugs. It is vital he works carefully with your MDS. Both DH and I have been successful with minimal rx to control PD depression /anxiety. Didi, as you have seen by responses, DH's behaviour is common to many of us. Each is different. You will find an answer. Also post to care giver forum as well as here. Collectively, their wisdom is immeasurable.... second only to their compassion. They can help you through this. We all know the experience of no...or incorrect ...medication. Most of us also know how quickly things normalize with the correct medication. You WILL find an answer. Be patient...especially with yourself. In our world, no one is perfect. Be kind to yourself. NN On a side note: Hunter described PWP's emotional roller coaster better than anyone. It gave me comfort to know others feel the same....and we are not alone. As Beau's Mom says...daily we live with a degree of grief as we recognize a bit of us leaving..but we must exchange grief with acceptance...which it sounds like what you do. That balance line...betwee grief and acceptance ...shifts daily. Stay strong, we .....can do this. Quiet speak, I listen. Definitely, on point as usual. John: its all about Dr Low 😉 Love the ones you love.
  15. Hi Bill, I am not a medical professional. However, your "dizziness" sounds similar to symptoms DH (dear husband) and I have. For us, it is dx'd as orthostatic hypotension. It is not a big deal unless it reaches acute stage. Our neuro had us take a tilt table test which monitors heart & blood pressure etc at different levels and determines rate of blood pressure as you arise. With that knowledge, doc can determine if it is serious. Based on our experience, I would advise you tell doctor and be tested as he feels necessary. OH is a significant component in anyone's dx and worthy of your attention. Good luck. NN PS. In my case, dizziness etc occurs approx 10 mins after standing. It's important to know that possibility to protect yourself from falling unexpectedly.
  16. Ok, folks...have read alot from Dr Google...changed exercises...tried supplements like potassium, calcium, magnesium...."rigidity" or "stiffness" has now evolved into the most awful debilitating pain of all time. All you former athletes and/or smart people please advise. Twice the thigh, groin, calf pain has increased to "charley horse" level...but entire leg is in constriction and pain...tendons are tight..and even with generous adipose tissue, the thigh muscle is obviously in spasm.. During the worst times, knee and ankle are tight and hurt. Other than those two times, pain and cramping come and go. I have noticed I think it is worse as I come down from meds. There are times with little me false hope that I'm cured. I am so grateful DH is a chiro who can work the spasm out...but if this happened in public I'd be humiliated...I've had 5 unmedicated births...have a high pain tolerance and generally can manage any pain situation...not this one. I experiencing the "D" word??....dystonia?? NN PS: This could mean a "no" to kayak and trike.....🙁
  17. Welcome, Ellen, to the forum. Try a search for cannabis or CBD oil on the forum. It has been discussed at length with varying opinions and anecdotal summaries. I have restlessness u speak of. I recently found the medical name for it and neuro says it is common. It may be common, but difficult to explain to someone who has not experienced it. I have found jets in a powerful therapy pool will provide temporary times adequate to allow sleep. Also, a yoga rubber roll helps provide pressure points to nerves...especially tail bone which then releases the chaos in legs. Good luck to you. NN
  18. Thanks for responses. 1. Quietstill...yep, thats why I posted since I've read posts where RBD gets out of control. I wondered if C/L is a factor. He has increased C/L and added an anti depressant...the dreams are less frequent. I use caution to slowly awaken him if he appears to be in a conflicted state...often to his relief. If he is laughing, I figure he deserves a "night out." (Smile). What is so crazy is how fast his "punch" was...which tells me how dystonia must be for some people. Appreciate your counsel ....when you speak, I listen. 2. .Beau's Mom... we did not make it on the road for Michigan...and flew instead to grandson's graduation. We are both determined to be on the crystal blue waters of Flathead Lake in Montana, driifting through the giant moss covered crevices on rivers in Washington state, and laying on beaches of Vancouver Island in Straits of Juan de Fuca. Just one foot in front of the other...often in a head wind...but moving. 3. BRG: Thanks for the support. I also hate vivid dreams....the same emotions remain with you for days...I've wondered if you can get PTSD from dreams. (Another smile) Two 450 Valerian root capsules ...3 mg of Melatonin....have helped me get good sleep. That is significant since recent sleep studies show I never enter REM...and had 266 leg movements in 5 hours...I figure I do aerobics in my sleep. ok, guys...I am now stoked...all it takes is body pillows and attitude.....and we'll be on our way...I got a selfie extender at the dollar maybe I can send pics...hmmmm...DH tremor....a camera extender...pic may not be too clear...but you will get the message.... Thanks, my friends.😎 NN
  19. Hi folks, It's interesting to compare DH's PD experience to mine. Everyone is different. I had vivid dreams awakening with screams years before dx. After being on CL, modifying stress load, increasing exercise, and adding alprazalam, valerian root, and melatonin at bedtime...I now have happy dreams, usually sleep well. DH has had no dreams nearly his entire life. After starting CL he started having vivid dreams...and acting out. I felt the swish of air pass my face as he threw a punch while sleeping. It was so fast, I hold greater rspect for the stories he tells of his youth.(smile). Now when asleep he laughs and giggles...which make me jealous...or he has emotions of conflict. I awaken him if it seems he is having a bad experience. If he is restless, we put a pillow between us in case a sucker punch is possible. Question: has anyone noticed a correlation betwenn vivid dreams and/or C/L? ...Or progression of PD? Gosh, life just keeps on getting more interesting day by day..... Good,luck u you the ones you love... NN BTW, We are nearly loaded for bucket list trip...hoping we have the where with all to make it happen...pontoon air plane ride air balloon ride...kayaking...trike rides....water rafting...we are working hard to get in the road......👍
  20. 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 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 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
  21. Thanks, Murray....helps alot
  22. Thank you for your reply. Ya know, aging is a transition 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 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 age may have less significance. I really appreciate your input...DH is rapidly deteriorating....and has different symptoms from it seems our world is being consumed with PD while we continue to resist it. Thanx for the support. NN
  23. 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!
  24. 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 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.
  25. 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