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Which symptom is most challenging to navigate?
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?
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70 Replies
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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.
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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…. 🙁
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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
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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.
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For me, it’s chronic constipation. It’s a never-ending daily struggle.
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Have you tried Kayam tablets? My wife (63 years old) swears by them. They’re on Amazon.
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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.
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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.
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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
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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.
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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.
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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.
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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.
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Good to know. Unless I don’t recognize the symptoms I haven’t had any problems with taking it daily as my Dr prescribed.
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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!
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Thanks, Lou. I haven’t tried Kayam tablets, but I’ll look into them.
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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.
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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!
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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.
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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!)
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Non-motor: depression, anxiety, apathy, fatigue.
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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?
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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).
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My sister has Parkinson’s and her orthostatic hypotension/dizziness is making her suicidal. Please give any helpful info!
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Ruth does she have any pets I and others on this site have pets and I can state for myself they are life savers.
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She can’t manage pets now. I was thinking of medication.
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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!
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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.
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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.
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Cognitive issues
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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.
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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
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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.
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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.
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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.
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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.
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Fatigue is the most difficult for me at this time.
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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
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Are there movement doctors also? With Parkinson, you should be seeing a movement doctor but he can be a neurologist also.
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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.
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You meet the nicest people by accident.
id say it’s time for someone else to drive you around.
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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
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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.
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Have you tried Botox? It can help.
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