[Toni Shapiro]

Thank you Ally and Lori.  I appreciate the information and you taking the time to reply.  I am aware of some of what you have recommended and I will be watching a new one from Parkinsons Society BC, CA on Feb 17. I believe it is open to everyone.

Rather than see another webinar or read another article I was hoping some people would share their personal stories here but so far I have been disappointed.  I understand it may be too personal.

 

[Toni Shapiro]

Yes, I have experienced bumping into things as well as finding bruises that were obviously from me hitting something but I did not recall how it happened..  I don’t think it’s weird though.  One of the reasons I stopped driving was that my depth judgement was/is off.  I misjudge door openings and my balance was off which were pre my formal PD diagnosis and anw indication that something was not quite ok with me.  I continue to bump into things today but much less since a levodopa adjustment.  I still find the occasional questionable bruise but not as much. My best guess is that it happens at night getting out of bed to go to the bathroom and I forget what I bumped by the time I awake to start the day.  For a time I would act out my dreams, sometimes wildly which could have easily caused my bruising.  Do you also experience sleep disorders?

 

[Toni Shapiro]

It has been over a year since my July 2020 post and I am still humming.  Like Amy I hum ring tones and just about anything I hear but whatever I am humming it is constant. Like others on this post it seems like I do it when I am content in the kitchen focusing on cooking or baking.  However it seems to be comforting and makes my throat feel better I interrupt it when I make a mess or can’t make myself do what I want to do, with  loud, frustration profanities.

[Toni Shapiro]

I look for and I need humor in my life.  Calling myself “Parkie” lifts my spirits and oddly  makes me feel more normal……until it doesn’t and I choke when I say it..  I embrace it and I hate it if that is even possible.

[Toni Shapiro]

I dream every time I am asleep for longer than a few minutes. My dreams are very clear and I can recall in detail maybe 60% of the time, although lately I am having more difficulty. I have multi dreams each sleep so varied topics in one snooze. I can dream about anything but most have something to do with my PD. Occasionally I thrash in my sleep, (I don’t mean Akathisia incidents),and I speak or I howl like a wolf or a dog. My poor husband! Recently he said I was talking in my sleep in a childs voice. I have taken about 6 months off using my CPAP. I should go back on it but wearing it was making me anxious.

[Toni Shapiro]

Hi Gary,
This is my fourth attempt to answer your post. I hope it goes through. I was very interested in what you had to say about flying and how after flights your Akathisia would be much worse. I know that you read my previous posts describing how horrific my symptoms were and much like yous. I have had almost a year of being Akathisia free after my neuro increased my levo/carb. However, I started flying again recently and now my Akathisia is back in full force, leaving my nights with little to no sleep and me moving most all of myself around and round and feeling like I am losing my mind. Your post was the first time I made a connection between flying and my symptoms. Yes, I was fully aware that it was symptoms intense during the actual flights but didn’t realize my symptoms would continue after. Thank you for your post. Like you I have physical and mental pain,have tried everything from diet to vitamins to new medications, and most of the rest. I also have skin issues with the cold as well as having the creepy crawlies all over my body. You mentioned Benadryl. I realized that during the time I was not flying I was taking antihistamine. I stopped it about the time I started flying again. I have a neuro appointment next month and will ask about increasing my levo/carb, as much as I hate to do it I am desperate. One bit of relief I get is Ativan but I take it maybe only once a month as as to avoid dependence. All the best to you Gary. I hope you get relief soon.

[Toni Shapiro]

Hi, Yes please. Today I have written lengthy replies to Gary regarding his Akathisia post. The first one was never posted and the second one I know I clicked reply and submit and actually saw it but it said ERROR (reply to reply or something like that. All I know is that neither have appeared. Can you please check what happened for me? It’s difficult to type and is frustrating to think I may have to start over again. Thank you so much. Toni

[Toni Shapiro]

I very much appreciate everyone who posted on this thread.  Thank you.  Your posts nudged me to think about my anxiety and some depression that has increased this past year.  I find the anxiety most difficult to deal with as I have little control over it where as with any depression that pops up I can exercise it away. I know other people can’t do that so I am lucky.

( Charles, I feel sad for what you have been going through.  With all you have endured, the the long term grief alone would be very difficult for me to cope with and I can’t hardly imagine your pain.  I am glad you are on the forum and hope you reach out to others for support.  I wish you well.)

My anxiety can be brutal.  It’s as if I am on a terrible OFF period even though it is not at a usual Off time.  I can change in a flash when it happens.  I can be looking and feeling good and then when something bad and unexpected happens I start shaking all over, almost fall, off balance, can’t  think how to say what I need to and my speech is off.  Thankfully this doesn’t happen often but when it does it is frightening. My startle reflex is over the top and I pretty much scream and jump at the slightest surprise or things I don’t see coming my way. I don’t expect any answers, it is what it is. I just wanted to share this because I find it helpful to see posts that I can relate to personally so if others have this problem I want you to know you are not alone.

[Toni Shapiro]

I would say it’s very important to understand that everyone with Parkinson’s is different and to always keep that in mind.  What may help one may not help the other.  There are so many parts/ symptoms related to P.D. that are not widely  known so keeping tract of everything you experience is a good way to start and share it all with your doctor.  Not all doctors have the knowledge or understanding of PD so find a neurologist/ movement doctor who specialized in P.D.. Take your medication seriously and take it on time. Educate yourself beyond basic information.

[Toni Shapiro]

Hi Jean,

I really get it.  It bothered me as well to increase my medication but I would have done anything to make it go away. My Akthisia was unbearable.  I was grateful there was something to relieve it.  Thanks to Jo’s posts and her support I was able to see my way though it.

I also remember how supportive you were to me and others when you were a forum monitor.  You helped me.  Thank you.  I am happy you are giving yourself permission to lighten your load.  Happy Holidays.

Toni

[Toni Shapiro]

Hi Jean, It has been awhile since I have seen a post from you.  I always liked what you had to say.  I am very sorry you think you have Akathisia.  It’s a terrible feeling.  I have been mostly free from that suffering since my neurologist added two more 100/25 Levocarbs at 9pm and two 100/25 Levocarbs CR at 10:30 pm.  My Akathisia would happen at night.  The increase of the Levocarbs and taking the CR’s closer together seemed to do the trick.  I hope you can get some relief soon.

[Toni Shapiro]

Hi Dave,

Yes, it’s a terrible symptom to live with. Click on Parkinsons Disease Symptoms under FORUMS on this site. Scroll down,  there are 11 descriptive posts from 4 weeks ago on this topic. I think it will be of interest to you.

I would have nights where I would move my whole body for hours at night.  I thought I was going out of my mind. My neurologist increased my Levocarb closer to bed time and also has me take 2 LevocarbCR right at bedtime.  That did the trick for me.  My Akathisia is pretty much gone.  Some milder restlessness.

Although this worked for me,(thanks to a post from an Akathisia sufferer suggesting increased medication and who validated my symptoms), every PD case is different and not all of us respond to medication in the same way.  I think it’s important for your relative to visit a neurologist. I hope you check out the Symptoms Forum’s old posts. All the best to you and your relative.  Support is a great thing for those of us with PD

[Toni Shapiro]

Hi Jo,

I sent you a private message.

[Toni Shapiro]

Hi Rob,

I havn’t had my toxin levels tested but I want to have it done and will look around for the best way to get it done in my area. Thanks for mentioning it. It reminded me that it is something I wanted to have done.

Yes I do have REM sleep Disorder. I am on CPAP which has helped me.  I also have gut problems so I am interested in the testing and the diet you mention.

I posted about my excessive exercise and how research shows that it can cause free radical damage to muscles, tissue, membranes, etc. (I found this very interesting when I first read about it).  Anyway, unlike a distance runner or athlete I went from the very minimum of exercise immediately into full on attack.  In effect, assaulting myself and not allowing my body rest for about a 5 month period.  That is why I am suspicious.  If I had been a runner or did regular work outs I wouldn’t have thought about it for the reasons you mentioned. Going at it the way I did, I still can’t believe I was capable of it especially with all the pain, is why I wonder.

 

[Toni Shapiro]

Hi Mary Beth,

Thanks for this post as it has brought up things for me that I haven’t thought of for a long time.  I’d like to add to my above post concerning my excessive physical training because I am thinking that the combination of my early exposure to pollutants and the over the top training are most likely the reason I have PD today. Although I 100% agree that exercise is very, very important for health, particularly if you have PD, I do know that it is a fact that excessive endurance exercise increases oxygen consumption that increases the production of free radicals and causes oxidative damage to muscles and other tissues, membranes and genes, DNA and leads to a state of chronic, systemic inflammation.  Common exercise can actually can build the antioxidant free radical defense system, but intense and high volume exercise overwhelms these defenses and cause significant free radical damage. The Oxidative stress from from free radicals damages cellular proteins. That chronic, systemic  inflammation is implicated in diseases such as cancer, heart disease,strokes, MS, Alzheimer’s, PARKINSONS, premature aging and in most debilitating, degenerative conditions. The more I think of this the more I am convinced this is the reason.

[Toni Shapiro]

Boy I wish I knew the answer as to where this came from in my case. There doesn’t appear to be a genetic predisposition.

I spent the first 24 years of my life in an area that has been noted to have a high percentage of persons with PD.  At the time I lived there it was very industrial but since that time the steel mills have closed. I am thinking that could be it.

I also wonder if I abused by body to the point of damaged, as symptoms that I now know are related to PD, began just after I went overboard with training for the Victoria marathon.  Within a period of just a few months I finished a half marathon and then completed a full marathon without ever even trying a 10k in previous years.  My friend and I would fast walk an average of 12-15 miles almost every day and to make sure we could finish the 26 miles, a week or two  before the marathon we did 26 miles.  I know, I know, that was incredibly stupid and not how you train for an event. A short time after I developed many of my PD symptoms.  I couldn’t lift myself out of bed or get out of a chair, my balance was off, I’d shuffle and I’d walk into walls, I was in a lot of pain, my hands would shake and I had pins and needles and my brain was off.  The neurologist at the time couldn’t find a cause but after a number of months I got better but I was never  the same.  Exercising moderately now has been helpful to me although if I do too much it takes me days to recover. I wonder if this played a part in development of my PD.

 

[Toni Shapiro]

Yes, the forum has been very helpful. I have learned so much from others.  I greatly appreciate that I have a place to bring up things I may not tell my friends.  There have been so many ah ha! moments for me when I read that I share an issue with other posters. I don’t feel alone.  So thank you to all who makes this possible.

[Toni Shapiro]

Hi everyone,  I also have many of the same issues with freezing as in all of your posts except for freezing when I come in contact with a dog.  So many strange things with this disease. Like Caroline I know anxiety plays a big role for me so because I worry about my speech and losing balance  so I freeze when I see someone I know.  Dogs ok….people not so much LOL! I experience the same as Vickie. I freeze getting out of a chair and was the reason why I fell with my computer and gave myself a black eye.  It’s bad enough that I fall or lose my balance when freezing but once I am down I can’t get back up on my own. Having my husband pick me up embarrasses me and makes me sad.  Doorways and corners are a challenge and I have no perception so I bump into things. I also have to make a conscious effort to walk and to do most everything.  Like Robert and RJ nothing is automatic anymore. Thanks for this subject post Mary Beth.

[Toni Shapiro]

Hi,

Thank you to everyone who responded to my Akathisia post. Except for the jumping jacks (way to go Jo) and the stairs, (only because I can no longer manage those kinds of movements anymore), I totally relate to Jo’s posting.  She described the symptoms perfectly and in great detail which I very much appreciate.  I agree, I want to jump out of my skin and yes, 100% my movements are purposeful and deliberate.  I will say to myself maybe if I do bicycle pumps, maybe if I stand up and hold on to something and shake my legs, maybe if I squirm and twist my body, maybe if I swing my arms for as long as I can, maybe if I sit down and pound my legs, maybe if I rock back and forth, all of these things I think of first and then execute. Like Russell it mostly happens to me at night.  This can go on for hours.  Long enough for me to worry about my sanity during the longer episodes.  Articles that call what I experience “restlessness “is so off base. I have RLS and it is not what I am talking about.  It’s like calling an ocean a puddle. Thankfully I see my neurologist in a few weeks and will discuss.

[Toni Shapiro]

Hi David,

Thank you for your very thoughtful reply.  I am aware of the connection between voice and swallowing which is why I mentioned my swallowing issues on your voice post.  My PD counselor tells me my voice is strong for having PD so I find it strange that I  have difficulty swallowing yet have a strong voice. She thinks it may be because of my constant humming and that I consciously raise my voice loud on a daily basis to speak to my husband and my mother who are both hard of hearing. Yes, it’s true that I can think I am doing something but realize I may not be correct. I will try your suggestion of taping myself. Thank you for the information on the Parkinsons Voice Project.  I think that last year Parkinsons News had an article on it. It looks like they are  doing great things. Although the website it says you do not need a Facebook account to join the webcam, when I went to enroll it appeared I would have a Facebook account and I don’t want one.  I will investigate further as anything to do with my throat scares me.

[Toni Shapiro]

Hi David,

I am at the stage where I have to use a walker and other aids to assist me.  Even though I am probably past midway with PD I think I still have a strong voice.  I choke on my food and pills a lot of the time but my voice remains  good although sometimes when off or talking on the phone too long I get hoarse. I do nothing purposefully to keep it strong but I hum constantly, day in day out.  My PD counselor said that humming is an exercise she gives PD clients to strengthen the voice.  I guess you could say that is what I am doing to keep my voice strong even though it’s unconscious.

[Toni Shapiro]

Hi Jo,  I am so sorry about the lack of empathy you have received. It made me sad and angry that all that happened to you.  I don’t know what it is about PD but it seems to trigger those kind of supportless, (is that even  a word), responses. I am very happy you have your husband.  I am also sorry about your first experience with the doctor. What a way to be introduced to Parkinsons. My husband was in the waiting room too.  I never thought to ask him to come in because I was so sure I didn’t have it.  He accompanies me to all my appointments now.  It’s helpful because I forget or stumble over my words and he clarifies either to me or for me. I can’t imagine how I would have felt if my Doctor yelled at me to bring him into the room. I just wanted to reach out to you and tell you that I hear you.  I think there is a thread somewhere in here about the frustration of talking to family about it. If I find it I’ll post it to you on this thread.  Take care.

 

[Toni Shapiro]

I told my husband first because he was in the waiting room when I had an appointment with my neurologist. When I came out of the Doctor’s office my husband asked what happened and all I said was, “I have it.” Apparently I didn’t ask the doctor any questions so I couldn’t answer any of my husbands questions to me. Going into the appointment I was sure I didn’t have it even though my GP had said I did. I had an explanation for everything that was wrong with me and insisted PD wasn’t part of it. At the time I knew very little about Parkinson’s yet I just sat there, thanked the doctor and walked out the door.  I didn’t ask him anything.  He came after me in the waiting room and handed me a Parkinson’s brochure and we left.

Yes, my husband is the one I depend on most but our relationship has changed. I get a lot of help from my PD counselor and I am so grateful for her.

[Toni Shapiro]

Hi Gary, Oh No…I just wrote piles of text in answer to your post. I am very appreciative of it and had lots to say. It looks like it didn’t go through on the thread and I can’t find it anywhere else YIKES!!! I will have to do it over but can’t do it righ now as it takes me a long while. Thank you for the post and I think you may find my similarities interesting once I get them in print again. Take care Toni