[Toni Shapiro]

Hi Ally, Thank you for this post. Although it is without saying that I would rather not have PD I have learned a number of things, many positive, about myself that I would not have know otherwise. I am more aware than ever about my privilege and sad that not everyone in the world has access to things that I have that makes living with this disease easier. I have the resources to get the best care, I live in the best country in a wonderful place by the sea, I have the love and support of my husband who has been so helpful to me as well as family and friends. I have a counselor who is also a medical professional specializing in Parkinson’s as well as a neurologist who is part of a movement disorder clinic that involves PT,OT, Speech professionals that provide free services when needed. Even though I am by nature a grateful person, since my diagnosis I I constantly embrace this and feel the stronger for it. I have most every PD symptom, known and lesser known but there are many things out there that are so much worse so I continue to be thankful. This doesn’t mean that I don’t ever complain or live in denial. I know full well what a challenge PD is. Before PD I would never have known any of this about myself in crisis nor would I have the experience of my body and my brain having limits and how people look at me as a disabled person. I have a keen interest in the complicated workings of PD which has lead me to learning many things PD related and not that I would not have known.

[Toni Shapiro]

Hi Kim, I really understand what you are saying about wondering if your symptoms are not the norm.  The more I learn about Parkinson’s the more I realize it impacts pretty much everything in your body.  Apparently low back pain and PD together are common. The stiffness of our trunk muscles doesn’t help and my understanding is that Central Pain changes how the brain feels pain.  Also learning about the Vagus nerve was helpful in helping me to feel I wasn’t crazy thinking many of my issues are PD related. Whatever the reason, like you, my lower back causes me a lot of pain particularly when I bend.  I still exercise and walk but at times the pain gets worse when I am very active or use weights or stand for a more than 10 minutes.  I do notice that just prior to taking my next L/C dose it gets worse.  It doesn’t eliminate the pain but it is better after taking the L/C.

[Toni Shapiro]

Thanks Mary Beth…Yes, I use humour all the time.  Love, love humour! It makes me smile and even if I am making a joke about myself it lifts me.  I notice that other people become more comfortable when I use it and will make funny observations about me in return.  My husband and I banter and have fun. I enjoy it. Yes,  I am aware my Parkinson’s is a terrible disease and I do suffer from it but I don’t want it to make me take it so seriously that there is no room for anything else.

[Toni Shapiro]

Hi Richard, I am wondering if you recall where you saw the statements about the reduction or elimination of Levodopa and if you feel ok sharing that?  Have you ever forgotten your dose every so often and felt great rather than the usual off feeling like I have? Thanks, all the best. Toni

[Toni Shapiro]

I have had 2 L/C increases this past year.  It helped the off times I was having about 30 minutes prior to my next dose.  I can usually tell when its close to the time to take L/C.  It mostly starts with my inner Parkinson’s acting up and/or RLS and/or pain in my legs.  That said there are times when I realize that I am well over an hour past due for my scheduled dose and I feel fine, absolutely fine.  During these times I think maybe I should ask my neurologist if I can reduce my meds.  Does anyone else ever feel like they did before Parkinson’s?  I have most all of the symptoms people have listed in the “what are your symptoms thread ” yet there are times I feel well and wonder about not taking L/C which has been so helpful.  I started taking L/C just after diagnosis. I really would be interested if anyone was able to stop L/C and function well without surgery.  Based on what is now known about Parkinson’s and dopamine it doesn’t seems possible.

 

[Toni Shapiro]

Yes Sherman, I hear you and I feel it too.  When I was asked what is the thing I miss the most my answer was driving.  I sold may car and gave up my license a few years ago.  That was very, very difficult for me but the best decision I could have made.  I noticed that my judgement was off in that I couldn’t tell just how close or far away another vehicle was, my leg would freeze or I would experience RLS, my anxiety was over the top which made my tremors worse.  Always thinking what if I had a sleep attack or have an accident and so on. Like you I could never live with myself if I caused an accident and hurt someone because of my pride and desire to keep my independence. It was a blow but I found that using public transportation had advantages in that it relieved my anxiety, gave me exercise in longer walking times, got me out among people, allowed me to see new things from the window and helped to make  me feel competent and still in control.  I have been open to all the positives of public transport and it helped greatly in easing my loss however I am realistic  and not in a fantasy about it.  I still wish I could drive and know it has limited my world but I shudder when I think that I had my grandchildren in the car when my driving was reckless. I am grateful I recognized that it was time.  I share your loss but I keep concentrating on the positives of letting go and I am ok.  I am sure you will be too.  Take care.

[Toni Shapiro]

Hi Joanna,  I was surprised to read that you don’t find much that is positive on this site. Personally I find  positives in all of the Forums. The Forums are helpful to me in various ways and contain information that does embrace the positive, including the Symptoms Forum and Living With Parkinson’s Forum.  To me a symptom is not a negative in itself, symptoms are simply facts. I can deal with those facts in positive ways, ie connecting with someone on this Forum while exchanging symptom information, as well as ways to work on something specific to improve my situation and to live my life to the  fullest.  I feel empowered by this. I like to keep in mind that living our best lives doesn’t look the same for everyone. Forum users identifying symptoms provide information for others with similar issues to go forward and do their own research, discover alternative treatments and/or suggest helpful exercise/physio info, etc. which seems quite positive to me.  It’s possible you are missing information you could relate to by deleting Forums or posts based on the titles alone or ones that include symptoms in the title.  You mentioned exercise and alternative treatments. Both topics have  individual Forums…..Parkinson’s and Exercise and Parkinson’s Alternative Treatment. I hope you can find what you are looking for. I wish you the best.

 

[Toni Shapiro]

Yes, I like goal setting.  I like what Ally said about breaking down goals into manageable smaller milestones.  I find I can overwhelm myself with all that I want to do and become frustrated and anxious which isn’t helpful. Presently I write down what many would call just a daily to do list but is very much like goal setting to me and keeps me focused.  One long goal I had and worked towards by concentrating on my mental and physical health was to take the bus and rapid transit to downtown to see a production by myself and I did it. It was very uplifting.  I am so grateful that it was a day my pain and symptoms happened to be minor and that I had an opportunity to do it.

[Toni Shapiro]

Hi,  I would say having to give up my driver’s license.  I drove for 60 years and loved every minute behind the wheel. I drove a stick shift until I couldn’t manage the clutch anymore and although driving an automatic was boring it still gave me a good sense of independence. It was incredibly sad and painful for me to give up driving altogether but any risk of a possible accident being my fault and maybe causing harm to someone was too awful to think about so I turned in my license. I felt like a failure and a terrible burden to my family. It honestly only took about a week of feeling sorry for myself that I got on a bus ….and guess what! I enjoyed myself!  I live in a not too friendly public transit area but I manage and I do it on my own which is very freeing. Thank you Ally.

[Toni Shapiro]

Why is my post on hold?  Thanks! Toni

[Toni Shapiro]

Thank you to all who responded to my post.  It is so helpful and I very much appreciate it. Karlyn, I noticed that you included sciatica.  I too have it and just this year I realized that there is a connection. The spinal cord and brain stem seem to play in everything. Jeffery, I was interested in what you said about stress.  I have it big time and it upsets me to think how I react to it.  I too shake all over.  I don’t scream at people but I do yell out loud to no one  or to myself, often swearing my head off.  I get so frustrated with it I actually want to throw things. Not at people, just in general.  When I stress like that all my symptoms get much, much worse so it’s like a chain reaction.  I am now on Zoloft which is helpful.  If I can feel a stress episode coming on I take an Ativan.  I only use maybe 1 every 6 weeks or so. Robert, when you mentioned the sobbing I wonder if you think it is either inappropriate and/or an over the top reaction to something that is not that terrible.  This year I noticed that I react with sobs inappropriately, meaning that I go way overboard, crying at nothing really,  just for seeing a friend of my nieces. One incident I was very emotional toward my son in law who made a fun joke that usually I would have laughed hard at.  I cried, sobbed embarrassed myself and went on and on.  It was awful.  I had absolutely no control over it. I have since learned of something called Pseudobulbar Affect (PBA) that is associated with PD.  Of course it could be anything really considering our emotions can be problematic when PD is in the mix.  Patricia, I too have mouth issues and lost a tooth. I also see my dentist regularly and care for my teeth and gums but it doesn’t seem to matter. Katherine, thank you again for all that information.  I very much appreciate knowing whatever I can.  As far as Macular Degeneration goes there does appear to be a connection to PD.  I have read some Journal articles and studies re Ophthalmology and PD and it is listed as one of  diseases that is associated with AMD.  There are several. The retina is dependent on neurotransmitters to do their work and neurodegeneration plays a role  because of the cells in the retina. It has something to do with oxidative stress as well I think. I no longer have many off times since my Levocarb was increased and I take my meds on time.  I find if I have had a stressful day or was too active or did too much exercise or I am in pain that I seem to use up my dopamine much quicker and may have an off time under those circumstances. I have a PD counselor who said that yes it can be used up faster under stressful situations. Yes, I am on Zoloft now which has helped at lot.  It’s a change from something else, the name escapes me,  but was not good for people of my age so I was switched.  I also will take an Ativan if I feel a stress or anxiety episode coming on.  I take them sparingly using maybe 10 in 12 months. I have never had a Hiccup problem.  I notice that I have some symptoms it seems that few others share yet symptoms often noted by those with PD I do not.  Go figure. It shows once again how different we all are and for me personally when I find someone who shares my experience I don’t feel so alone. I have a very strong voice and I could be a wine or perfume tester as my sense of smell is extremely good.  I also do not have weight loss in spite of my GERD, esophagus and mouth problems.  I am overweight. I do know about ANS and agree wholeheartedly that it is really interesting and sheds light on much of my wondering. Now if I could only remember all the names of all the various branches, ganglia and the rest of it. OOOPS!  is memory a part of this? LOL  I hope I answered all your questions. Thanks again to all.  I learned a lot.  I hope the thread was helpful to others as well.

[Toni Shapiro]

Katherine, thank you so much for your contributions to this forum.  Your posts have been very helpful to me and you have the same kind of questions about PD that I have.  I also believe most doctors are unaware of many other symptoms that are related to PD and that more and more will be attributed to it in time. There is a thread here that asks what is your weirdest symptom that may be of interest to you and others.

I have quite a few symptoms related to PD and I am grateful that so far I haven’t had them all at the same time! True, but that was a bit of a joke.  I have a great deal of difficulty explaining my issues to my doctors.  I don’t expect everything to ever actually be resolved but I would like to have a better understand the whys of it all.                                                       I have the standard movement issues that are well known like Dyskinesia  however my physio has helped me with freezing, slowness and my gate.   I have/had all of the following:            Various skin disorders I did not have before, constant itching, bruising, crusted scalp, oily face.    Cognitive issues, can’t find words, use words incorrectly, slurred and stuttered speech,  forget information just relayed to me.   Difficulty swallowing, dry throat, water goes down wrong so I choke, clearing throat. Loss of dexterity, can’t pick up pills, fine motor    skills are bad etc. Either excessive sweating or no sweating at all.   Can not tolerate heat, feels like I can’t breath in heat.  RLS maybe Akathisia is so awful at times I truly want to throw myself off a bridge.  Thankfully increasing my Levocarb has lessened the craziness of it.  Also I can be very rigid. Legs swelling, sometimes only one leg, sometimes both, sometimes includes feet other times not, charley horse cramps at night terribly painful.  Macular Degeneration, dry eye, vision issues. Big time anxiety but meds helping. Chest Pain/Pressure on chest/Cardio problems that cardiologist is still investigating.  Constipation is mostly under control with drugs and magnesium, heartburn and sharp as well as dull abdominal/gut pain. Terrible sleeps, REM, very clear dreams, insomnia. Slowness in doing everything.  Fatigue but better since my Blood Pressure med was lowered. I have pain most every day but don’t know what is PD related and what is arthritis. Crazy Blood Pressure readings. Hum constantly many times not even aware.  I Scream very, very loudly when surprised like if my spouse enters a room I am in,if someone gets on or off the elevator and I am not expecting it, I have no control over the screams.  Cry hard at inappropriate times. That is all I can think of right now that I have experience with PD.

[Toni Shapiro]

Hi Katherine,

This is Toni.  Thank you for your post.  When you mentioned at least 20 symptoms and that one day you would list them all I found myself wishing you would have done that in your post. I am very interested.  I posted a new topic asking if participants would list all of their symptoms that are PD related.  I think we can learn a lot from each other.    Had  Jorge not posted this thread it might have taken me a much longer time to make the connection between cardio and PD.  Since seeing his post I have been reading research papers and other articles on the topic and and I am grateful for all the information that is out there.

[Toni Shapiro]

Hi Jorge,

I don’t know what is going on with the pain and pressure I feel in my chest almost daily. Until I read your post I hadn’t thought that it could be Parkinson’s related.  I don’t know why it didn’t occur to me since pretty much every thing else I have is related.  I am waiting for the results of a chest x ray and a dye scan but to date my doctors can’t tell me exactly what it is or what it isn’t so I wasn’t given a treatment.  I just live with it and take detailed notes as to where the pain is, degree of pain, time of day, what I was doing at the time and a description of the pain as my Doctor requested.  I also report my Blood Pressure and Heart Rate that I take numerous times a day. Hopefully the doctors will figure it out once they have the information I am collecting. Unfortunately I don’t have any information concerning treatments.   I can understand your frustration. All the best to you.

[Toni Shapiro]

Hi Mary Beth,

I like to do research.  It helps to make me feel like I am doing something to help myself.  Knowledge is power and I often feel powerless.  Just when I think I know almost everything about Parkinson’s ????I learn something else.  It is particularly helpful when researching symptoms that are not well reported or when I come across something that is related to Parkinson’s that I was unaware of.

[Toni Shapiro]

Hi Cynthia,

I also clench my jaw very tightly, to the point of giving myself a head ache but what I am really interested in is what you said about your tongue.  I have that too.  My tongue seems to fill my entire mouth and the sides of my tongue are often sore, some times bloody,  due to my teeth biting it. My tongue is always in the way.  If feels as if it is swollen.  I very much appreciate your input as I thought I might be the only one.  I am sorry about your recent diagnosis Cynthia.  I hope you have loving support.

[Toni Shapiro]

My startle reflex is off the charts.  I can not control it and it causes me much embarassment.  I have had if for a long time, especially so since my PD diagnosis and it is getting much worse. It doesn’t matter if I am having a series of good days or bad days and  I have no issues with my meds. I make startle like noises with varying degrees of loudness. The loudness of my screams and the body shakes that come with my reflex doesn’t seem to follow a pattern in that I can scream loudly at just dropping a pen and have a lesser noise response to someone coming up behind me.

If my husband comes into the room I let out a scream, if a gun goes off on television I scream, if someone gets off the elevator while I am waiting for it I scream, if someone comes up behind me I scream, if I drop something I scream. If I almost drop something I scream. Last night I yelled so loudly at a bomb going off on a  tv show that my husband thought the neighbors below us would call the police LOL. Today I dropped a piece of paper and screamed loudly. It feels like my heart is beating a mile a minute when it happens.

I would greatly appreciate it if someone experiences this, or even remotely like this, if you could please reply to this thread.  Thank you.

 

[Toni Shapiro]

Hello, Yes my speech has changed, particularly when I am anxious and or due for my meds.  I do experience some social anxiety and  I am dealing with that but I stutter, slur, can’t find words to complete my thoughts, can’t articulate and usually just give up trying to finish a conversation and just stop talking.  At other times I can carry on a conversation normally. Although I have many of the lesser known PD symptoms along with the usual, unlike many my voice has not  softened so my speech issues are quite noticeable.  My husband is very hard of hearing so I always have to raise my voice which often hurts my throat.  Maybe that’s why my voice is still strong.

[Toni Shapiro]

Hi Ann,

I am really glad that you mentioned pseudobulbar.  In my post where I list most of my symptoms, at the end I mention crying inappropriately.  I should have mentioned pseudobular by name in the post as that is what I have.  It would have been helpful to anyone not familiar with the term but has the symptom, so thank you for adding this.  I thought I had mentioned it… brain fog!!!!  It is so unexpected when it happens and I can’t control it.  I am thankful that I haven’t had an episode in many months.  I appreciate people sharing so much information.  As you said…just when you think you knew it all. It amazes me what is involved in this disease and I learn something from someone every day. I find educating myself to be a very powerful experience.  I am always looking at symptoms on the threads to note other lesser known symptoms.  The more information I have the more I believe I can help myself. Thanks!

[Toni Shapiro]

No, I live in the suburbs and transit isn’t good here however Vancouver, 20 minutes away, has a good transportation system that is expanding as I write this.

[Toni Shapiro]

Hi Ally,  Yes, Thank you.  My post appeared a day or two later.  The bus taking has been fun except when I need to take my walker. I like to people watch too.  It’s like I am a part of society again. Unfortunately I can’t read well anymore which was second to driving in what used to give me the greatest pleasure.  PD has played around with my eyes to the point it’s almost painful to focus on the print. Just sitting there looking out the window is good.  I have noticed many things of interest that escaped me when I drove.  (Ally, I saw a post and from it I am thinking  you are also Canadian.????????)

[Toni Shapiro]

Hi Judy, Same with me re sciatica.  I was surprised to learn the various PD issues that come from the spine.

[Toni Shapiro]

Hi Tom, When you say seeing problems do you mean eye problems or hallucinations? I also have the tingling in my feet, bees buzzing in my feet, bubbles in my feet.  It really bothers me too.  For me I think it is the business of the spinal cord and sciatica which is linked to PD.

[Toni Shapiro]

Hi Dick, I just saw your reply now.  I am so glad you mentioned Akathisia.  I started a thread in 2020 and there were many responses going through to 2021.  Many of the posts are very detailed which I found extremely helpful.  Jo was great with  details.  It is good when a post is descriptive as often there is so much to it you miss something that could be of value to someone else.  I suggest you  look up the Tags Akathisis, Amantadine, Inner Parkinsons, RLS on this FOURMS site. It will pop up just below the bubble where you type in the tags. There is so much information and sharing and relief for  those of us knowing we aren’t crazy.  Let me know if you find it please. I would appreciate your thoughts after you read it all. Further to this, my new neurologist thinks this is a really bad case of RLS.  I remember when I was researching this there were videos on line of people displaying Akathisia symptoms and it could have been me.  No matter what any of us call it for me it had been the most terrible part of this disease.  Those symptoms I describe in the other thread only happen now once in a great while.  The only change that was made was an increase in my Levecarb. Best of luck to you Dick.  I feel for you.