[Toni Shapiro]

Hi,

Right now I am incredibly frustrated as I started this twice so far, writing quite a lot, only to have my catcher mit hands do something, I have no idea what, cause all my work to delete itself!!! Twice!! It takes so much time to try and redo things!! UGG!!  This is not even my bizarre symptom lol

Like Jo S it’s hard to pick just one bizarre symptom.  I have a lot of them.  The one that causes me the most embarrassment is my way over the top startle reflex.  I stand in front of an elevator waiting for it to open and if someone is a bit to the side inside the elevator and steps out…I scream!  I lose balance and move backwards and my arms jump up in the air.  Usually seeing my embarrassment people laugh and make light of it saying something like they never thought they were so scary looking.  I do the same in my own condo that I share with my husband.  He will just walk into a room I am in and I will scream, (and I really do mean scream), shaking me up to the point of losing balance and him saying, “I live here!”.  It also happens watching a movie when some one gets shot, even though you can almost see it coming.  The other day I was napping with only the screen in the door near my bedroom. A neighbour came to the screen and called my name and I jumped from my sleep screaming and so startled.  (For years I have not been able to move my body that fast. Lol .) She was terrified something horrible had happened to me. That’s one of my bizarre symptoms.  Drama Queen startle reflex!

[Toni Shapiro]

Hi Garrett,  The pandemic has been a relief for me too. I also find zooming friends and family an effort.  Once on a group family zoom I fell trying to move my computer and ended up with a very colourful shiner!  My anxiety levels can get over the top particularly because I know what I want to contribute to a conversation but can’t get the things to come out correctly from my mouth, if at all.  It’s more and more difficult to explain what I want to say so I give up. People can only wait so long for a response. I am inarticulate, I stutter trying to get a word out, I abruptly stop talking because I don’t remember the word I need, I shake inside and out with frustration.   All of this causes me to shut down. Writing messages on email or WA is much better for me because I can take as long as I want to find the word to complete a thought.  I just have to make a lot of typing correcting because I don’t always hit the right key.

[Toni Shapiro]

Hi Amy, Barbara and Sharon,

Thanks so much for replying. Being cooped up with COVID apparently makes my humming particularly annoying to people. No escape! Maybe I should check out the caregivers forum to see if anyone has written about it there.

I was talking to my PD counselor about it and she mentioned that my voice is strong for someone with PD. Everything else about me and PD is not good and progressing more quickly than what we thought…. but my voice is pretty strong, unless I am Off.  I also still have my smell which is excellent and unusual I think.  It left her wondering about it and she is interested in doing some research because she said that humming is one of the exercises she gives for soft spoken patients. Maybe unconscious to me I am treating my own voice. So, my question to you is…. do you have a rather strong voice?

Thanks!

 

[Toni Shapiro]

I often don’t tell the truth.  People must be sick of hearing  me say “I’m struggling these days” as opposed to my big smile and upbeat conversation with them just a number of months ago… so I lie. Sometimes I just leave it as “well, today could be better” rather than going into detail, as some days my list is incredibly long ,and then go straight into asking them how they are to get off topic. I don’t want people to avoid me.

I can relate to much of what Robert said.  I am lucky that I have a PD counsellor who I speak to every two weeks and I can tell her anything.  I feel very fortunate to be able to vent with limited guilt.

[Toni Shapiro]

Hi All,
First, I would have never thought that any of you had trouble typing or constructing good sentences. Gosh I already had to go back and make 4 corrections in one sentence! Anyway, good for you because you would never know from your posts.
I liked what was said that I can I give rather than take. Yeah, It always helps me Robert H. Although I can’t manuver the knitchen well and using flour and such and mesuring T and t forget it! (It would take 10 people to clean the kitchen if I tried it again lol)So painfully I compromised and used some commercial things. My husband bought cookie dough and I mixed various seeds nuts and dried fruit kneading into store bought dough which exercises my hands too. My hands feel useless like I have on boxing gloves but I can enjoy kneding. In the end it is a great feeling to accomplish something and have the cookies deliverd to my neighbours who have been so supportive.
Robert I will take that bath this afteroon. It sounds perfect for my inside shakes this morning.
One thing. My PD counsellor suggests to me to sometimes allow the thing that hurts or frightens me inside and wallow in it a bit rather than fight it all the time. I works for me most of the time. Constantly telling myself I should do this I should do that is exhausting so just like before I had PD I will take a pajama day and not do anything much. Most times the next day I am ready enthusisastically. same thing with my depression and anxiety.
have a good day all,.
ression, tried everything for my fatigue that doesnt respond to exercise or much of anything,

[Toni Shapiro]

Hi again Robert,
Toni here. I just want to add how much I liked what you said about not telling people what to do. You post was perfectly worded and I appreciate it. I will be seeing my neuro in September if I can wait that long for upped meds. May I ask your doseage to keep in mind when I see the doctor? It sounds like it is helping. Thanks again

[Toni Shapiro]

Hi Robert,
Thank you so much for your post. I really appreciate you taking the time,especially as your PD is also fast pace. I have only found one other that has the same problem. I will be having my neuro doctor up my meds. It sounds like it will be the best thing for now. May I ask when you were diagnosed? Also is it just motor symptoms that are getting worse quickly or is it all non motor? Thanks again. Take good care.

[Toni Shapiro]

Hi Ally, Thanks…I am really fine with it. I was just surprised when I saw it. ? Thank you for checking for me.Hope you have a nice evening.

[Toni Shapiro]

Hi Ally,

Your post has prompted me to write. I too suffer from sleep issues and agree that the fallout of that adds to my daily stress and anxiety.

In just over a year and a half, since my official diagnosis, I have gone from minimal function restrictions due to my PD to significant changes both motor and non motor. I started out very positive and grateful that I had PD rather than ALS or some other horrible disease. I had no sense of being depressed and I was in high spirits. People would remark on what a fantastic attitude I had.

I knew little about PD and was very interested in learning more. I was surprised how complicated it all is and how symptoms are not the same for everyone. Although I realize the best thing for me is to focus on today and move forward, I am stressed and anxious and depressed about what I think is a very fast progression of my PD. I thought it is suppose to be slow moving. I can’t help but wonder how long have I really had it? My neurologist has suggested I had it for a few years before diagnosis but I had tremors on my right side for at least 10 years. I always thought it was essential tremor until I was told if you shake at rest, which I have always done, then it’s PD. All the stress of not knowing is really getting to me because I think knowing the timing would help me to gauge where I am at at this point. Certainly I couldn’t go from where I was a year and a half ago to using a walker unless I have had it for a much longer time or can I?

Has anyone else had a quick progression? Any insights to this would be helpful. Please note that Yes,I know the research and I exercise, I go to physio, massage, I have a PD counselor, I take medication for anxiety and I do everything I can to be the best I can be. I also know I can’t dwell on this and I need to move forward.

Thank you for this forum. I very much appreciate it.

[Toni Shapiro]

Hi Ally,

Wow, a new home how exciting! I hope you will have many wonderful wins in that house.

I had a lovely zoom video with my daughter and grandchildren who I havn’t been able to visit in a long time.

Also,  friend brought me a beautiful  sunflower bouquet.

I am still smiling.

[Toni Shapiro]

Allie J, Hi,

I can’t thank you enough for your post. It helped me so much to read what you had to say. It was awful thinking I might be the only one who goes through this and I would doubt myself over and over. I want to copy some of your wording because it so much reflects my experiences.

I messaged my sister, and in detail described what her pressure feels like to me.  She was very open to listening to me and thinks she has a better understanding now.  I have told her all this before but I think she so much wants me to be the way I was that it’s too hard for her to accept. I think this is something I will have to remind friends and family about.  So all is good for now Allie.  Thank you. I will take your advice for future when this happen again with her or others.  I will be firm.

[Toni Shapiro]

Hi Ally, Yes I do like to plan for the future, particularly now that I have Parkinson’s we need to adjust our retirement budget to reflect that. It’s been interesting how small purchases like shower seat with handles, toilet seat bidets, bed rails, canes, altered clothes so you can dress, shoes you can get on with help of 3 foot shoe horn, massage, physio therapy, etc. can all add up quickly. These things were not part of our original budget. The idea of nursing care or assisted living scares me financially as well as emotionally.
Yes, prior to diagnosis we did have a plan. We were very much wanting to spend a year living in Europe. It had been a dream of ours. Unfortunately it will not be possible. I wish it was just delayed but we know we can not do it so need to change plans. Our new plan is to live as healthy and positive as we can, move our bodies as much as we can and take adventures even if it means in the slow walkers lane. Now if I can only get my super anxiety under control!

[Toni Shapiro]

Hi Mary Beth, Hope your Dad is doing well.
I chose to take medication right after my formal diagnosis. It was obvious that I had had Parkinson’s long before. My neurologist also thought it was in my best interest to start right away and I am glad I did. I had almost immediate relief. Although my medication has changed a few times last year I think I have the right mix at present. But only for present not for future. I think regulating is tricky is because things keep changing; symptoms, on and off times, progression etc. Parkinson’s itself is very tricky and it follows that regulating medications would also be an issue. I think it is a given that my medications will keep changing.

[Toni Shapiro]

Terrible sleeper for years. CPAP machine has helped greatly. Without it my husband says I jump around in bed sit upright and howl just like a dog. In the morning sheets and covers are all twisted and mostly off the bed. I flail my arms and legs and yell things. Pretty scary for him. It doesnt happen when I am on my CPAP.

[Toni Shapiro]

Hi Ally,
You probably won’t believe this but I’ve never logged on to a podcast before. I have u tubed but not heard a computer podcast. I wasn’t sure how to get on. I thought I would try since you mentioned it. I listened to some of When Life Gives You Parkinson’s and I think I am hooked. Thank you. It’s good to hear what other’s go through so as not to feel so alone. I am from the Vancouver area and watch Global TV but I don’t remember anything about Parkinson’s being on so I really appreciate your post and bringing it to my attention.

[Toni Shapiro]

Hi,
I had posted something about me and exercise awhile back and I didn’t find all of the responses very helpful even though I appreciated that people took the time to respond. After reading Jean, Carolyn,John, Robert and Mary Beths posts I don’t feel so alone with my pain and fatigue and nausea during and after exercise. I am happy that some Parkies are able to exercise vigorously. I know some feel strongly that others should follow suit but the truth is we are all different with different abilities and symptoms. In spite of the pain I do in fact exercise most every day as well as go to physiotherapy but now I will only do what I can do and only for as long as I can. If I do extra I am off for 2 days where I can’t exercise at all due to pain and fatigue. I was a certified personal trainer for awhile in my life before PD so I am aware of the benefits of exercise but we need to do so at our own pace. I look forward to reading your article Jean.

[Toni Shapiro]

Hi,
Thank you for this information Argya. I too am interested in the psychological aspects of PD. Also I will look up the blogs suggested by George. I get quite a bit of my information via the library and The Michael J. Fox Foundation. The MJFF often has Utube videos, Davis Phinny in particular, that my family finds helpful in attempting to understand this disease and my symptoms.

[Toni Shapiro]

Hi,
Thank you for this topic. I also have a big problem with constipation. I always drink extra water, eat lots of fiber, take magnesium 150 high absorption 2 times a day, senokot stool softner, restoraLax (suggested by my neuro) and glycerine suppositories when necessary. However, I can and I do have bowel movements with this regime. The issue I have is that I spend a great amount of time in the bathroom whether I go or don’t go. Strain or don’t strain. I spend an amazing amount of time in the bathroom either way. I find I wake up between 3-5 am most every morning because of bowel pressure. My average time in the bathroom is 45 minutes but at times I wait over an hour. The rest of my day is similar. I’m sorry to be so graphic but I havn’t read anything very specific on this topic. Most of us just say constipated but like all of PD symptoms each of us can experience something odd or different. I don’t know if anyone can relate to what I mean and if others have this kind of bowel issue. My massage therapist has suggested stomach massage that she says can be very helpful. I will be trying it soon and will come back to this post if I find it helpful.

[Toni Shapiro]

Hi Shirley,

Thank you so much for your post. It prompted me to research this and  I am going out today to get xylitol.  My dysphagia is very upsetting to me and difficult to live with, particularly as you stated, aspirational pneumonia is the major cause of death for people with PD. I too did not hear that xylitol was helpful for PD patients so I am excited by this.  Awhile back my dentist gave me samples of XYLIMELTS, a time released xylitol that fixes to the side of your tooth.  At the time I thought it was for dry mouth but I realize now that she gave it to me because of my PD.  She had commented that I need to see her more regularly because of PD and how mouth health is particularly important now that I have the disease.

[Toni Shapiro]

Hello,

I was under the impression that our posts were private in the sense that it was open only to log in members.  I just googled “mini exercise bikes and PD” as suggested in the forum in response to my post asking if anyone had experience with a mini exercise bike and to my shock my exact post was on the google page with ads for mini bikes for anyone to see.  My full name was included.  Is this normal practice? Do our actual posts come up on google under the Parkinsons Today News Forum? Is the Forum aware of this?

Thank you

[Toni Shapiro]

Yes, I have had many opportunities to educated family and friends about PD.  Before my diagnosis I knew next to nothing about it and what I did know, or rather what thought I knew, was a myth (ie everyone who has Parkinsons has tremors.) Since then I have done quite a bit of research and surprisingly find new things about Parkinsons every day.  There are a million of them and as you know it is a very complicated disease.  It seems to me that there has been more press about PD this past year or so, most likely because of the number of celebrities who have come forward to say they have the Disease, still, most people I come across have no idea about it.  I am happy to share my personal experience with anyone and to point out that others with PD may look different from me, feel different from me and have different symptoms.

[Toni Shapiro]

Yes, I had to buy different shoes, tops, pants etc..  I can’t bend over and my hands are bad so I can’t tie shoes and sketchers that are cloth or any other cloth type shoe leaves holes in the toes due to my PD shuffle and my big toes curling upwards so now I wear slip ons and need to get leather.  I bought a 3 foot shoe horn that I love and is very helpful.  Forget buttons…I went from not being able to do small buttons to med and now large leave me too frustrated and helpless.  I leave the button or snap to my jeans undone and sometimes only half zipped. I wear elastic waists as often as I can. I have been buying larger type pullovers with big  openings at the head space with no closures or buttons.  I  stopped wearing  coats or jackets unless it is really cold or rainy because I have to ask for help getting it on or off and I hate asking.  I have to lay on the bed then balance on the edge to get on underware and if I freeze forget it.  I try to avoid socks altogether.  It takes a long time to get dressed and it’s very frustrating.  Frances, I love the idea of a long length scarf that covers the knees when you go out to eat.  I will look for one, thank you. I use an over the shoulder cape to go out because it doesn’t have sleeves so it’s great….. until it slips off my shoulders Lol! I am starting to realize how PD can nickle and dime you into the poor house.

[Toni Shapiro]

Thank you David.  I appreciate any and all information I can gather.

[Toni Shapiro]

Hey Mary Beth, Tina, Ally, Shannon, Matt and Robert.  Thank you so much for your input.  I can’t tell you how much I appreciate it.  It’s good information sharing and great support.  Since my original post I have seen my neuro and my GP as well as had a telephone counseling session, massage and physio (who suggested I turn in my cane for a walker and that shook me up.)  Sheesch!  this PD is a full time job and the guilt that since I can’t drive anymore that my husband has to cart me around to everything is now starting to get to me.

FYI My neuro added 2 levocarb CR at bedtime to my cocktail and it has been working.  The time release is helping. I wake up feeling good with minimal shakes and balance issues and havnt fallen out of bed again since.  Also my GP increased my Citalopram as well as gave me 10, .05Ativan to take if my anxiety is really bad. (Not all at once haha),  So far so good.  I have been having massage which not just relaxes me and helps my anxiety but my tremors too.  As well I am doing physio so I have exercises specific to me.  I continue to use the treadmill and hold on for dear life but most always feel good after I do it so yes I do see the benefit in exercise.  As far as the counseling goes the first session was ok in that we concluded I was depressed which I hadnt considered because of my good spirits .  I scheduled another much needed appointment that never happened due to the counselor and insurance company’s choice of service provider that left much to be desired but that is another topic that I will call “Fits of Anger “on my next post lol. I was surprised at how terribly upset I was when the counselor failed to call and it made me look at other areas that I am angry about.  I worked for a crisis/suicide as well as an abused women and their children 10 bed facility for almost 20 years so you would think Id have more insight.  So that’s the latest.  Thanks again for listening.