Toni Shapiro
Forum Replies Created
-
Hi Garrett,
I just started 2 CR tabs along with 2 100/25 tabs just before bed. Its the first time in a long time I have been able to sleep past 5 am and wake up energized without bad tremors and being very unbalanced to the point of having to break falls. The idea of using CR in stressful situations is interesting to me. I suffer from anxiety in social situations and my tremor and balance goes off the wall. I will talk to my nuro about if he thinks the CR could also help with my anxiety since it is working so well at night.
-
Hi, Thank you for including this information. I didn’t realize there were guidelines so I really appreciate it.
-
Hi, I just had an increase in my meds 2 days ago. I started out with 1/2 Apo- Levocarb 100/25, 3 times a day, increased to 1 tab 3 times a day after 1 week then 1.5, 3 times a day after another week. This was going to be my dosage and was working well for about 4 months. I couldn’t believe how it helped with pain. I went from hurting everyday to almost nothing and my tremors were better. I didn’t expect that so it was wonderful. 4 months in I was increased to 2, 100/25, 3 times day. After 3 months I noticed that in the morning I was incredibly shaky and off balance and would have to wait until 8:30 am to take my first Levocarb dose. I also could not sleep past 5 am the latest. My nuro prescribed 2, 100/25 Apo-Levocarb CR, (time released) at bedtime along with my 6 regular pills throughout the day. Although it’s only been 2 days I have been able to sleep past 5 am and I wake up feeling energized without the awful shaking and balance issues. I don’t like medication and the idea of taking 8 pills a day just for my PD, not including anxiety medication, upsets me, however it works so I am very grateful.
-
Thank you for sharing this Tina. I appreciate your support and that of Lou and others. I think whatever it is/was is starting to lift. Maybe I just needed to let it all out. I am feeling much better. Filling out those insurance forms made it all so real, so final. Anyway, I havn’t craved a coke all day LOL!
-
Hi, Wow, this resonates with me. I have been using Rogaine for years now because I was losing my hair like crazy. It has stopped as long as I keep up the Rogaine. I havn’t seen anything about hair and PD so I am interested if others have found hair loss to be a problem. I was thinking maybe the Rogaine gave me PD but I realize that I have had this disease many years prior to diagnosis.
-
Hi, this post is timely because my husband and I have been entertaining the thought of a move due to my condition. I can’t drive anymore but I can slowly get on a bus or train and it helps to make me feel somewhat independent. We would like to live in an area where public transportation is more available and less of a problem than it is where we presently reside. Also we have recently thought about our future with this disease and realize out of town family will be coming often to help out when necessary and we just have a small condo. We need more space to accommodate them or at least reconfigure things here for a murphy bed or bunks or something. Moving is expensive and just the thought of it makes us stressed and stress is my worst enemy. Not sure what we will decide.
-
Hi Lou, I appreciate your response. I have read about compulsive behavious but usually in reference to gambling, shopping or sex so I never thought about it pertaining to food so this is interesting to me. I am on Apo Levocarb and I don’t think it’s one of the medications that provokes it but I will do some research.
Since my original post I have had a counseling session and after discussing my eating issue my counselor said that it surly is depression, that I am depressed. All the food I eat are carbs, kid foods, those from my childhood which makes me feel better mentally ….at least for a little while. So, she thinks I am wanting more serotonin to lift the depression.
It was very interesting to me as for almost a full year after diagnosis I have been in very good spirits, feeling fortunate that my life has been wonderful up to now and that I have great support, that I could have something worse. I was very positive and I kept reading that depression was a symptom of PD. I never understood why I never felt depressed because I had every other symptom under the sun. That said, I had my first breakdown recently when I was calling my insurance company to inform them of my PD. After the phone call I was shaking like crazy all over and cried like a baby. It really hit me that this isn’t some research project I have, it’s real and it’s my life forever and it will get worse. It was the first time I cried or had such intense feelings about it. It may have been my first true acceptance.
-
Ah ha! Now I see where I am suppose to answer you… after first sending my response to you to myself lol.I should know this by now.
I don’t really snack. I eat snack food for my breakfast lunch and dinner with nothing inbetween. So maybe chips for breakfast or spaghetti if I am nauscous (yeah I know…crazy). I like things you would never think of to eat when nauscous. I eat olives and big macs and packaged kraft dinner or mr. Noodle or ice cream and bananas or apples and salt. Does your Dad eat when nauscous too? I can only eat what I crave and keep it down. Did your Dad eat junk food before and is eating more or did it just start? I can’t believe I drink coke. You are a wonderful daughter Mary Beth. You Dad is a lucky guy.
-
Although I am fairly new to this form I want to thank you for your encouraging words and insights. I look for your name on the form to make sure I read what you have written. I can’t express how much I appreciate this forum. It’s the first thing I look for every day…..and coffee! All the very best to you Jean.
-
<p style=”text-align: center;”> Hi Ally, Yes, I have had 3 of my posts held up for moderation. I don’t understand and I have no idea why this happens. It’s very frustrating.</p>
-
Again my post is held up for moderation and I never know why this happens. Has anyone else had their posts held up? Thank you.
-
Hi Jean,Yes I have also decided to donate my brain to research. I was surprised at how difficult the process was for you. It shouldn’t be that way, particularly seeing how desperately research is needed. I am looking into the ins and outs of how to do this in Canada. I will soon be discussing this with my neurologist in hopes he will instruct me to the least frustrating way to to it. Thank you for this article. I too feel its the least I can do.
-
I wrote earlier about how RLS drives me crazy….sitting on a plane or trying to get to sleep is killer. While reading other peoples stories on the form I came across INTERNAL TREMOURS. I had never heard of that before. It was a relief for me to have a name for something I have been experiencing for years. I used to describe it as having ginger ale bubbling in my veins and throughout my whole body but mostly in arms and legs. I am thinking my RLS is worse because I am sure I have internal tremours. I looked it up as a topic but couldnt find anything specific to it. I so appreciate this form. Knowing its a real thing helps me.
-
Thank you Joel. I will look at the studies. I haven’t heard of Lions Mane so I appreciate you bringing this to my attention. The only thing I notice so far is that if I have constant good sleeps on my CPAP my memory is much better. Thanks again
-
Hi Mary Beth, I think I screwed up again and posted on the wrong thing. I just wanted to say Yes, I am closer to my husband. I am surprised that he has been so supportive and caring and interested and I feel like I have let him down by getting this disease. He has been wonderful and it’s very difficult for me to accept his help and understanding. I was always the active one, the care giver to all. That part is not easy. I knowvI am changing his life but we are very close.
-
Hi Curtis, Thank you for your message. I appreciate knowing it’s not just me althougj I wish no one else has to go through it. The good thing for me is that I might forget but usually it does come back to me after a minut or so. Thank you again
-
Hi Mike, Thank you so much for your response. It’s very helpful. I have an appointment with my neurologist in January and plan to go over it with him then. I wrote it all down so I don’t forget which in itself is kind of funny. I like the meds I am on because I am in good spirits, feel very positive and happy and grateful for many things. Must be the “dope” in the dopamine LOL! Thanks again.
-
I am glad to see this on the forum as I have a terrible time getting in my husbands suv which is actually smaller than most. I can not longer drive so my Honda has been sold but I had trouble getting in and out of that one too. So low or high is a struggle for me. Does anyone find that handles on the sides of a car to help yourself in are of no use to you? The only way I get in is if I pull myself from a handle at the ceiling. Same for getting out of bed. I could do it better if there was some kind of handle from the ceiling I could grasp. Any aides for holding that are on the sides don’t help me at all.
-
Hi Jean, It does seem like I have most every symptom ….maybe because I went through the form topics and added to many members posts to let them know they arn’t alone when their postings rang true for me.
-
Thank you Jean. I appreciate your feedback.
-
Yes, I have pins and needle feeling in my feet. If I move them it stops soon after.
-
Yes, I do it frequently. I have had 2 root canals and have dead teeth due to grinding my teeth to the point of trauma. My jaw hurts and I have to constantly remind myself to relax my jaw.
-
I never have been able to sing but I find I get hoarse often, have lower sounding voice and will start coughing if I speak too long.
-
RLS comes and goes. It can drive me to tears. It feels like I am losing my mind and I move my legs violently at times. I will ask my neurologist about that medication. Thank you.