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    • #24518
      Mary Beth Skylis
      Keymaster

      Parkinson’s can come with an array of different symptoms. My dad struggles a lot with freezing episodes. But tremors and dyskinesia are extremely tough symptoms to navigate as well.

      Which symptom is most challenging for you to navigate? Have you found any ways to minimize their effect on you?

    • #24555
      fred kanter
      Participant

      For me balance is the most difficult.  Using a cane has been helpful but when I turn when standing still I can lose my balance.

      • #24697
        JB
        Participant

        The same for my husband Fred, falls are a big thing, walking through a tighter space, or walking through an open space.  No rhyme as to what causes it.  And as soon a he is on the deck, he stands back up again immediately and then falls again…. stubborn to the end.  Cane’s don’t work for him either, as like you he turns or spins around when a fall starts so it doesn’t help.  Even hiking poles, one in each hand don’t work….  🙁

        • #25163
          Ruth Geiser
          Participant

          I recognize the pattern reading your text. In my case it has started one and a half years ago.

          And I must say, it makes my life extremely difficult. It happens out of the blue or as you say in an open space and in narrow passeways. I also tend to fall when I want to take something down from a shelve or when I get startled.

          Going outdoor , visiting markets or lively squares is out of the question, I can’t even go out without somebody who lends me his or  her arm. That makes me really sad.

          I’ve had MP for 39 years , which is a long time but this frequent occurence of  falls is the worst symptom I ever had to deal with.

          I’m glad you wrote!

          ruth

      • #25186
        Jon Busch
        Participant

        The biggest, most frustrating challenge is freezing, particularly when getting in and out of bed. I was diagnosed in 2009 but this freezing came on rather suddenly about 4 months ago. I work out regularly at the gym (every other day) . Is anyone using supplements with any effect. I’m trying the expensive probiotic PS128. Just starting on the second month, the results = zip, nada.

    • #24556
      Jo S.
      Participant

      For me, it’s chronic constipation. It’s a never-ending daily struggle.

      • #24604
        Lou Hevly
        Participant

        Have you tried Kayam tablets? My wife (63 years old) swears by them. They’re on Amazon.

        • #24611
          Alan Berry
          Participant

          Hi Lou,

          I have switched from a laxative which was itself an improvement on nothing.

          Now I am taking Weber Naturals Probiatics. 30 billion active cells. After a three day delay I am now performing daily.

          Purchasing through Amazon I get 30 pills for about $12 + tax Canadian. Dosage only one pill a day.

          Alan Berry.

          Hope you get the same results Lou.

        • #24728
          Jo S.
          Participant

          Hi, Alan. Thanks! I just started taking a different probiotic/prebiotic, so please keep your fingers crossed for me that it will work. I’ve tried probiotics in the past and had no success. But this one is intended specifically for constipation, so I’m trying to remain optimistic this time around.

        • #24686
          George Sharp
          Participant

          my speech my wife all ways say she cannot understands me and that is sometimes when i have talked very slowly and made a great effort to be clear ,my Daughter who lives in the flat at the front of the house she seem to under stand what i have said so it is a bit flustering drives me nuts but that is the life i have now Dworge

        • #25176
          fakhiuddin ahmed
          Participant

          Speech problems seem to disappear when my wife is in the “on” period and sometimes, speech symptoms are the most apparent symptom of the “off” period.

          I have also noticed that depression and other cognitive problems occur independently in the off periods. With my neurologist’s acquiescence, I will try, levodopa/carbidopa ODT and see if it helps.

        • #24688
          Roy
          Participant

          Hi, Jo,

          My hubby, Roy struggled with constipation, too. We actually ended up in the ER once due to it. Our nurse made a recommendation for a tea found in grocery stores called Smooth Move. There are a couple different flavors to choose from. It’s important to allow the tea to steep for 10-15 minutes, or even more. To begin, he drank it every evening, but now, he just uses it 2-3 times per week. In addition, he eats at least 2 pieces of fresh fruit per day. We hope this might help you, if you haven’t yet tried this regimen. Good luck.

        • #24695
          David C Collins
          Participant

          All the right foods for ne are not enough, Miralax every day keeps me “normal” and out of the ER. But can’t miss a day.

        • #24701
          Jo S.
          Participant

          Miralax is what I’ve depended on, but it has begun to cause inflammation of my gut, so I’ve been looking into alternatives and also ways to just cut back on the number of days I use it.

        • #24706
          David C Collins
          Participant

          Good to know. Unless I don’t recognize the symptoms I haven’t had any problems with taking it daily as my Dr prescribed.

        • #24699
          Jo S.
          Participant

          Thank you! I’ve known about that tea for years but haven’t tried it. My concern is that senna can be harsh and is considered one of those “addictive” laxatives. Still, I’m going to check it out. I appreciate your reply!

        • #24727
          Jo S.
          Participant

          Thanks, Lou. I haven’t tried Kayam tablets, but I’ll look into them.

      • #24698
        JB
        Participant

        Hi Jo, my husband is 60 now, young onset PD 23 years ago… he started struggling with constipation about 10 years ago and in the last 8 years has started on Senna leaf tea leaves along with a fruit tea (non caffeine) each afternoon and night time before bed… it keeps the constipation at bay so he goes every 3 days without having to use a heavy laxative.  Senna leaf being natural.  It is an irritant so that is how it moves things along so he takes as little as possible which is 2 teaspoons approx per tea twice daily.  In the last 2 years we have added a stool softener from the U.S. called Colace without laxative in it.  It’s also been fantastic and he takes 1 in morning at dose time and 1 in evening at dose time.  He does meds 4 times per day normally.

        • #24703
          Jo S.
          Participant

          Thank you, JB! I’m familiar with senna, although I’m concerned because it’s considered “harsh” and one of those laxatives that could be viewed as “addictive.” However, I might try the Smooth Move senna-based tea that Roy (above) had mentioned. I use Miralax currently, but I haven’t tried Colace (yet). That is definitely a good option for me to keep in mind. Thank you, again!

        • #24708
          JB
          Participant

          Agree Jo,  senna can be harsh.  His neurologist said what he is taking is fine and he keeps to a certain amount, a pinch and a half twice per day  🙂  Good luck with the other options…. I have written them down as well, in case we need to try something different along the way.

        • #24709
          Jo S.
          Participant

          Hi, JB. I picked up the Smooth Move tea yesterday and got some Colace today (both the regular strength and the one with senna, for “emergencies”). The Colace regular strength that’s just a stool softener seems much easier and less messy to take than Miralax, so I’m hoping that will work and that I won’t need the one with the senna too often. I’m a tad older than your husband, but I’ve had constipation problems for several decades. Who would have thought it was related to PD? (Not me, and not the countless doctors I went to for it over the years!)

    • #24558

      Non-motor: depression, anxiety, apathy, fatigue.

      • #24667
        Mary Beth Skylis
        Keymaster

        Those are some pretty rough things to be facing, Haddon. Have you found ways to manage them? Or do you see a therapist at all?

        • #24707

          Thanks all for your comments and suggestions.

          For the depression and anxiety I’m taking Lexapro (20mg) and it does pretty well.  For fatigue, brain fog, and EDS  I take 200 mg of Armodafinil in the morning.  It helps some, but not greatly. Finally, the apathy is pervasive and nothing seems to help.

      • #24691
        sandra wilkinson
        Participant

        Haddon,  these are the same symptoms as I find challenging.  They never go away no matter how hard I try to get on top of them.

        • #24693
          David C Collins
          Participant

          Also the symptoms that limit me the most. From the beginning Ritalin has been a big help with fatigue. I also find that stress, or activities requiring thought and concentration increases the fatigue, but physical activities help reduce it. Trying to learn a song in my guitar…..fatigue. Playing what I know, or what I feel….reduces fatigue.

      • #24700
        JB
        Participant

        Haddon, Sandra, David,   at specific times also my husband gets depression and anxiety together.  If he falls it brings on both…..along with shortness in breath at night which also brings on anxiety, worry, normally when meds are nearly worn off.  The only thing that makes it better is fully ON meds.  Also exercise (riding his bike) makes him far less depressed.

        He has DBS, now 10 years which controls VERY well dyskinesias.  He never had tremors.

    • #24564
      Richard
      Participant

      For me its my freezing of gait and associated falling due to the loss of balance when I’m frozen. No medication has helped and I’m nearly housebound after only 3 years.

      • #24702
        JB
        Participant

        Hi Richard, my husbands falls have gotten a lot worse and talking to him from behind is really bad, but unfortunately DBS has not helped with falls at all, in fact it seems to be worse, and is probably progression.  We have no answer yet for how to make falls less except I catch him or hold his hand out which helps steady him.

    • #24566
      Karla Burkhart
      Participant

      I have always been very active and loved hiking and walking. I have been having an increasingly difficult time with stiffness. At times I feel like the tin man without an oil can. I can no longer do many of the activities I enjoy. I retired early from teaching elementary school not knowing what the problem was but knowing I was too awkward and off balance to continue. It was 5 years later I was diagnosed.

    • #24573
      Tim Brindley
      Participant

      A-Typical PD is what I have.

      Thankfully my wife has arranged the house to make it the easiest it can be for me.

      i constantly freeze up and fall just about everyday yet I’ve been lucky as I haven’t broken anything except a cup.

      I’ve gotten severely worse since the beginning of 2022

      I was a strong, energetic, active individual until PD struck.

      • #24574
        Richard
        Participant

        Hi Tim

        your case of Parkinson’s sounds exactly like mine. I was originally diagnosed with atypical Parkinson’s but it is being Treated with the same drugs that are used to Treat normal Parkinson’s. Unfortunately, the drugs don’t seem to work For freezing of Gait And most researchers consider this a problem to be worked on.

        • This reply was modified 6 months ago by Richard.
        • This reply was modified 5 months, 4 weeks ago by Kevin Schaefer.
      • #24575
        Richard
        Participant

        Hi Tim

        your case of Parkinson’s sounds exactly like mine. I was originally diagnosed as atypical Parkinson’s but it is being Treated with the same drugs that are used to Treat normal Parkinson’s. Unfortunately he drugs don’t seem to work For freezing of Gait And most   researchers consider this a problem to be worked on.

        • #24599
          Tim Brindley
          Participant

          Richard

          l know exactly what your saying about the drugs don’t work as I’m going to the Mohammad Ali center for treatment and they have told me they have never seen a case advance as rapid as mine has.

          Prognosis is I won’t be walking by the end of this year.

          like Cynthia stated I lose tract of my thought train real easy where as before the on slot of PD I had a memory like a computer.

          Just taking each day as they come some are diffidently better than others.

        • #24605
          Paul Hojuson
          Participant

          Tim: my case is the same. I’ve had a rapid decline in the last year and anticipate being in a wheelchair by Jan 1. It was hard enough to accept the use of a cane for balance purposes and now a wheelchair! My neurologist has no further suggestions; my social worker has suggested a home aide/convalescent care and my dyskinesia is driving me crazy. Out of frustration, I asked to speak to a psychiatrist to at least get me a medication so I can feel good about my condition. Lexapro has helped @ 10mg twice/day.

          Participating in Rock Steady Boxing, daily walks and stationary bike rides have also helped maintain my independence. I’ve come to the realization, there is no good solution and only I can be my own advocate. To give up is really the start of the end and I just won’t accept this.

      • #24669
        Mary Beth Skylis
        Keymaster

        Hi all,

        Balance and freezing are some of the things that I worry about most for my dad. He seems to handle these changes pretty well. But he definitely freezes more than he used to.

        • #24798
          Raul Jordan
          Participant

          My freezing has caused me the most problems. Since I can’t walk very far with my walker, I use a wheelchair. My freezing got worse about a year ago after having DBS the freezing became a major problem. The doctor said my walking was not the result of the surgery. The doctor is not able to tell me if the walking issue will get better.

    • #24579
      Don
      Participant

      Muscle atrophy is my main concern but I don’t know whether PD is the culprit.  Whatever, everything is a lot heavier than it used to be!

    • #24577
      Cynthia Johnson
      Participant

      When conversing with people I’ve noticed it’s becoming harder to complete my thoughts. I feel like it’s becoming more difficult to complete thoughts and I struggle trying to complete sentences and articulate the right words…..In trying to communicate I lose my train of thought very easily.

      • #24680
        Jo S.
        Participant

        Cynthia, I have the same problem. Mainly, I just ignore it and let the other person deal with my gaps. That helps me relax a bit more, which in turn helps me focus better. I also do word and number puzzles and play games that challenge my brain. Although I’m retired, I’m engaged in volunteer work that requires me to solve problems and communicate solutions to others online. I think all of that helps my verbal communication and focus quite a bit (at least most of the time).

    • #24596
      Ruth Gravitt
      Participant

      My sister has Parkinson’s and her orthostatic hypotension/dizziness is making her suicidal. Please give any helpful info!

      • #24597
        Tim Brindley
        Participant

        Ruth does she have any pets   I and others on this site have pets and I can state for myself they are life savers.

        • This reply was modified 5 months, 4 weeks ago by Tim Brindley.
        • #24603
          Ruth Gravitt
          Participant

          She can’t manage pets now. I was thinking of medication.

        • #24690
          Roy
          Participant

          My hubby was diagnosed with Orthostatic Hypotension for about 18 months before we began looking at Parkinson’s Disease. He takes Propanalol to keep the blood pressure stabilized. If  his BP is very low, he drinks a large glass of water, waits 30 minutes and checks it to see if it was dehydration. If it remains low, he drinks a cola and eats a cereal bowl sized bowl of potato chips. Again, he waits 30 minutes before checking the BP. If it is still low, he takes a Lisinopril. Sometimes, it takes 3-4 hours before his BP stabilizes. If his BP is super high, a tall glass of water and a nap fixes it. Meanwhile, he walks around like he’s under the influence!

    • #24607
      Tim Brindley
      Participant

      I also have a problem with my speech, my wife calls it mush-mouth.

      I’ve lost all the sound output in my speech too as in my head it seem like I’m yelling and in reality I’m whispering. Nothing wrong with my lungs but I run out of air when I’m talking and that also screws up my speech.

    • #24612
      Alan Berry
      Participant

      I have weak legs, frequent fatigue, restless legs when sleeping, painin legs and arms but I can tolerate all of these without medication.

      My worst symptom is that my brain has deteriorated so my concentration is poor and it is impossible to join in group conversation since I am unable to grasp what is being said. Lastly my memory is ridiculously poor, sometimes I can’t even remember my grand-children’s names.

      Alan Berry.

    • #24622
      Mary kelly
      Participant

      Cognitive issues

    • #24661
      Larry Gasinski
      Participant

      I was diagnosed about 3 years ago  At first the symptoms were pretty mild, but they have progressed in the last 6 months.  My main concerns are balance, as well as my feet freezing but my upper body is trying to move forward.  Thus has resulted in several near falls as well as a couple of actual falls.  Also, I tend to stoop forward when I walk which results in my picking up speed.  This also increases my danger of falling.

      • #24684
        Shirley Cypher
        Participant

        consider an upright walker. It helped my husband a lot. The upright walkers help you to walk upright plus they have a seat if you get tired. Good for shopping. our street (rural subdivision deadend) doesn’t have sidewalks so we were able to walk on the edge of the pavement with no problems for a quarter mile. The uprights usually have larger wheels

        • #24685
          Larry Gasinski
          Participant

          I’m actually considering getting the U Step upright walker.  It has a reverse braking system which means you have to squeeze the brake handles in order to move.  Otherwise the brakes are on.  This seems a bit safer to me.

        • #24689
          Tim Brindley
          Participant

          I have that style of walker and it’s the best.  Mine also has a clicker and a led light that shines on the floor which helps me walk

          I have the other type too that didn’t have brakes on without squeezing the handles.

          I fell at least 5-6 times.

          I can’t believe anyone would sell a Walker that allows movement when it’s stationary.

    • #24670
      Anonymous
      Inactive

      I find the slowness and stiffness in my hands the most difficult at the moment, but it is also an indication that I need a quick release medication, as then I can manage until my next timed dose. As I am only 49 I live in constant fear of the next new symptom and if that will be the end of my so called normal existence.

    • #24677
      Grammie
      Participant

      For my husband it’s been dyskinesia. It hits after each dose and even with amantadine it will persist. We are now looking at possibly adding an amantadine. Can make his walking difficult and even dangerous because his leg throws out so far. Have the people with voice issues tried the Parkinson’s Voice project? It can be helpful.

    • #24679
      David C Collins
      Participant

      Fatigue is the most difficult for me at this time.

    • #24683
      Shirley Cypher
      Participant

      My late husband struggled with a combination of dysphasia (swallowing problems) and dementia. Both tough alone but combined really hard. It got worse after he broke his hip last June. Downhill from then on. He was 88. As you get older take precautions about falling. In April he would go outside and fiddle around without his walker. After breaking his hip he was wheelchair bound because he would keep falling. Did keep me on my toes thou

      • #25132
        Bart Salop
        Participant

        Fatigue. if i see a flat spot i want to lay down. i take modofinilo and caffeine. i sometimes sleep 2 days in a row with the medication.

    • #24687
      fakhiuddin ahmed
      Participant

      My wife’s speech is often difficult and sometimes, impossible for me to understand,, despite speech therapy. This may be due to my hearing aid which improves some sounds and not others.

      My wife does not drink enough liquids despite my pleas(her urine is dark) and she is often confused. I wonder if there is evidence that dehydration is the cause of her cognitive problems

    • #24726
      Sheila
      Participant

      Hi everyone,

      My husband has many of the symptoms described here – he was diagnosed 5 years ago and the first 3-4 years were very manageable but getting much harder now.  The very worse symptoms he has are what we call his “hot head syndrome” whereby his face and head feel hot and pulsing although he doesn’t look hot or even feel hot when touched.   This symptom is very distressing to him and he has to go and sit in a cold room with the air conditioner on and often enough a fan blowing directly onto his head.   It can take an hour or more for him to start feeling better.   This symptom is usually accompanied by an upset stomach or a sense of indigestion.  This is not helped by the usual medications for reflux/indigestion.   A gastroscopy showed nothing unusual.   No-one else has reported symptoms like this, doctors seem to be at a loss and I have searched the Internet for clues, all to no avail.   Please … is there anybody out there who can relate to these symptoms and perhaps give us some clue as to how to manage them.

      • #24729
        Tim Brindley
        Participant

        I have those symptoms and the group of doctors said they didn’t know what I have

        I’m  going to show them this post to educate them.

        Thank you.

    • #24731
      Sheila
      Participant

      Thank you, Tim, for responding.   I’m sorry you are also having to deal with these symptoms.  Good luck with your team of doctors and do please let me know if they come up with anything worthwhile because anything at all that can relieve these awful and debilitating symptoms would be so welcome.

    • #24730
      fakhiuddin ahmed
      Participant

      Has he had a CT with contrast or MRI of head done recently? My wife feels very hot, actually sweating when the ambient temps are comfortable for the rest of us. this was ascribed to dialatation of skin vessels under control of sympathetic/para sympathetic nervous system which goes awry in P.D.Could this be happening to the intracranial vessels? pure speculation until discussed with neurologist.

      • #24752
        Sheila
        Participant

        There has been no CAT scan or MRI as yet and thank you for this suggestion.   I will raise the possibility with my husband’s neurologist next time we see him.

        • #24753
          Tim Brindley
          Participant

          If had the cat scan and mri both with contrast and it didn’t help the team of neurologist at the Mohammed Ali Neurology  Center in Phoenix Arizona make any decisions as to why it’s happening to me.

          I hate the MRI as I’m claustrophobic  the Cat scan is a piece of cake.

        • #24783
          Sheila
          Participant

          Sorry to hear it didn’t help, Tim.   That is so frustrating but you have to try everything possible as we are doing. We recently heard of a study that concluded Gluten could exacerbate Parkinson’s symptoms so my husband is now trying a 3-month trial of a gluten-free diet.   It’s probably a long shot but who knows?  Worth a try I think.

        • #24796
          Beth T Browne
          Participant

          Are there movement doctors also? With Parkinson, you should be seeing a movement doctor but he can be a neurologist also.

    • #24744
      Dave Berry
      Participant

      I was only diagnosed this year but I had my suspicions for a couple years.  When I start in the car I suddenly forget how to get to my destination.  I’ve lived in this town for 40 years and it’s a little bit complicated by the university pedestrians and time of day traffic.  I usually just start driving in the general direction without feeling lost but not having a clear plan in mind.

      At first I thought lack of sleep was causing this as I was having multiple vivid dreams each night that woke me.  I take 2 Trazadone tablets now and I stay asleep but the driving without a clear map bothers me a lot.

      • #24746
        Tim Brindley
        Participant

        You meet the nicest people by accident.

        id say it’s time for someone else to drive you around.

         

    • #24784
      Den Russell
      Participant

      Drooling.  No way to control it. Dysphasia means I am on a liquid diet.  Like the man said: I don’t drink
      a lot – I spill most of it…

      Hand tremors don’t help

    • #24794
      Troy
      Participant

      Fatigue. Difficult to know if I’m dealing with it as a symptom of the PD in and of itself, side effect of L-dopa, side effect of Lyrica (given for pain), side effect of Mirapex (given for REM sleep disorder- PD symptom) or due to the general lack of sleep (PD symptom). Probably a combination, which makes it difficult to address. Sometimes I want to stop all meds to see how bad the fatigue would or wouldn’t be; but the accompanying carnival act would be too severe.

      • #25172
        Grammie
        Participant

        Have you tried Botox?  It can help.

    • #24795
      Beth T Browne
      Participant

      Sleep and the tremors in my arthritic hands that are bent out of shape making cooking and other things very difficult. Also, sometimes, fatigue.

    • #25156
      Hoyt Wallace
      Participant

      Freezing of gait, especially when initiating a turn or backing up, is, by far, the most obnoxious PD symptom that I have encountered in the five or six years that I’ve been battling this ailment. I am an eighty-three year-old male in otherwise good health. Combined with some balance and coordination problems, the freezing of gait has caused a few falls, of which two resulted in shoulder injuries.

    • #25169
      Laurie
      Participant

      This is not one of the most challenging but I wanted to share it because it works. Every time I would yawn, a muscle in my throat would cramp up. I thought I was getting a heart attack. My Doctor said it was dystonia. I rub magnesium cream on my throat every day and it takes care of it, including if I get cramps in my legs in the middle of the night then I get up and rub my legs with it. It works, so I’m sharing!

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