How is everyone?

[Lake of the Woods]

Hello everyone,
Through our OT meetings, Helen and I met and because of our shared interest in keeping active became friends.

Last month, along with 2 other female friends, we travelled to Florida and spent a week biking in the morning and relaxing and enjoying the warm weather.

Helen was not comfortable with a regular bike, but rented a 3 wheel bike and she advised that it was extremely comfortable and easy to operate - this was her first time on a bike of this type.

We rented a place right on the bike trail so there was no busy street to cross to access the trail. There are many designated trails across the U.S. and for more information on this go to http://www.railstotrails.com. All the trails do not allow any motorized vehicles on them. I noticed also that they were patrolled daily by a trail ranger to ensure all was well on the trail. They were also exceptionally clean and well maintained.

I noticed also that there were many different kinds of bikes available to rent and by posting this we are hoping that it might give you the idea to try this activity.

We certainly enjoyed our time there and spent a few hours each morning biking!

Helen and Peggy

[Gary]

This relates to the side effects of chemotherapy leading to OT. In discussion with my oncologist, he said that they are seeing "tremors" as a side effect from the drug Nelarabine. I was on it for about 8 months and saw my OT get slightly worse. The oncologist said that he had a patient on much higher dosages who had severe tremors. Despite my trying to have him add OT to his comments, he still does not distinguish and calls it "tremors." Got to have MD's refer "tremors" to a competent neurologist for the diagnosis.
Gary

[ssglen]

Wow, I just decided that this is my disease. I am seeing my third neurologist next week and no one understood. My friend found your website and my whole life changed. I am going through all of these things. My doctor has me on a new drug and more tests, pretty discouraging but I have to keep trying. I will definitely be watching and posting

[gloria]

ssglen: Happy the website was of help. Perhaps if you look for a large medical institution that has a Neurological Movement Disorder Center to call and ask for a neurologist who knows about OT for you to make an appointment with. They should be able to test you for a confirming diagnosis. How long have you had your symptoms? Please keep us informed, Gloria

[babyboomer54]

Hi all,

I was prescribed the medication clonezapan but stopped taking it as I didn't like how I was feeling. My memories not the best but the medication made it far worse. I have also heard that if it does work that you have to keep upping the dose to get the same results.
I was interested to hear that the fatigue that I feel from time to time may be a side effect as well.l have cavalier spaniels and love to take them for walks but I can no longer walk on uneven surfaces. My grandson tim came to my rescue recently as my legs started to go at the beach and he was the only thing available to hang onto. OT has certainly made me feel old at 60
Denise

[cinsim1@yahoo.com]

Hi Denise, I was prescribed Clonezapan, also and had the same results you did. I'm 59 and have been taking all sorts of drugs to manage my OT. Fortunately, when I can't get to sleep sometimes, I take a 1/2 of pill (Clonezapan) and I sleep like a baby w/ no side effects the next morning.
This year I had a double mastectomy, so I have been changing my diet to assist in my healing. I was wondering if anyone has changed their diet (gone gluten free or any other changes) and seen an improvement w/ their tremors? There was a neurologist on PBS, who claims that sugar, white flour, and gluten can cause tremors along w/ other health problems as we age. He showed a patient (a younger man w/ full body tremors) who got noticeably better months after he made diet changes w/ no additional drugs. Anyone see that on TY and any opinions??
Cindy

[babyboomer54]

Hi,
l hope everyone is well as possible? I have an appointment with my neurologist this week but l am wondering if l should go as I have decided not to take medication he has precribed as it makes me foggy and really doesn't help. He also charges a great deal for 5 minutes of his time. My doctor says that in order to stop the movement in my legs the medication dulls the brain.
I am finding more and more jobs difficult. I seem to reach for solid things to hang onto. I used to love shopping in the city but now I dread it as its hard to stand to look at things and l tire easily. I have booked a trip to greece next year normally l would be very excited but I find myself wondering how I will go sightseeing. I think l will have to invest in a fold up stool.l suddenly feel old at only 60.
Denise

[cinsim1@yahoo.com]

Hi Denise,
I feel just like you. I hope you go to Greece in spite of your condition. I think it will help you get your mind off this terrible disorder. Plus, how many people get the opportunity to go to Greece? Make sure you bring a cane if you don't already use one. It helps people to notice that you need a chair.
Hugs!
Cindy

[Di Di]

Hi ...I know there is a lot of Didi up on the forum , but I have to put my pennies worth in to this one as its just so important ........Denise I totally agree with Cindy .you go for it !!....the trip to Greece that is ,not sure about and understand your hesitation in going to the specialists ,when you are intending not to take the medication offered ..
Like Cindy says use a cane ,even if you don't need it at times, it shows others around you , you have a problem and they make allowances ................. order a wheel chair at the airports , they [the airport ] would sooner you do that than have a problem in the queues, there is staff employed just to do that job [keep them feeling needed , so everyone wins]

I am trying to stay drug free as long as possible , and am now looking at buying a walker with a seat just to use for cloths shopping as I have not shopped properly for some years [good on the pocket]but beginning to look a bit shabby ....believe it will work a treat ,can perch myself on it infront of a rack of cloths and go for it ....think it folds down , but not sure how good it would be for air travel ....others may tell us ?
with some careful forward planning ....Do Go To Greece...please , lecture over ..............................Didi NZ
P.S. my cane is called Henry ...the walker will be `able Mable `!#!

[babyboomer54]

Thanks its nice to know you understand how I feel.
Regards Denise

[gloria]

DiDi: Your help by answering the postings of other OT people is what our OT community is all about! You apply your knowledge and experience living with OT and sharing it with others to encourage them to go forward with new challenges. DiDi there is no limit to your "pennies worth" here on this website. It really means so much to all our members ( new or old ) trying to keep on doing things in their lives. Thanks so much for your great spirit ! Gloria

[Vera]

Thank you everyone who posted here. So much is "understandable' and yet never spoken (written) anywhere else. (This is my first post.)
I, Vera, am not diagnosed with O.T., but many of the experiences expressed on this site are also mine. The CBC documentary also rang true. I do not dare go anywhere without my cane chair. It works very well. Years ago I also froze with a mammogram, so was comforted when you shared your experiences. The cane chair has also solved this problem.
Has anyone mentioned having a constant feeling of nausea much like the presence of head noises that increase when triggered? This feeling of nausea is almost a constant for me that increases when standing, sometimes even after a second or two. Also sound frequencies can set off the same anxiety like symptoms experienced while standing. Can anyone relate to this? Your mention of small motor difficulties were also of particular interest.
The many encouragements gifted in your posts have buoyed my spirits - ie. the effort to go out, not to allow depression to set, to find ways to deal with O.T.'s limitations. Thank you also for voicing your frustrations and bewilderments.

[brittasmom]

Vera, I too have a constant feeling of a low nausea. I've had it for years. I go to bed with it and wake up with it. Often blame it on my allergies. But maybe this is another symptom of OT. I am so use to it that I forget that it is an ongoing thing that my body copes with.

[Foster]

Vera, Brittasmom, I too have had nausea, for years, diagnosed with OT in 2008, I always thought it was something I ate that didn't agree with me, never even occurred to me it may be part of the OT so very interesting. Also have had a lot of indigestion & the like. I have recently stopped eating dairy & all grains, anything processed etc.well about 90% so far (pretty hard to get rid of it all). I have noticed a huge difference, the real reason I am trying this route is I read a article about a lady who had OT & put it in total remission, with a Drs. & her son's help by eliminating the dairy & grains, figure anything is worth a try.
Thanks for this observation what we learn on this forum is amazing....
Shirley

[Foster]

Vera, I just noticed you are from Pentiction, was just there a few weeks ago camping, if you like please send me a email privately or on line, would be nice to compare notes with someone close by.
Shirley