How is everyone?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

dottiesport
Posts: 24
Joined: Mon Nov 28, 2011 10:07 am
Location: Bradenton, Fl.

Re: How is everyone?

Post by dottiesport »

Have not been on this site for a while and Good to see more people have been on since you have posted and requested people to say what they are doing and Mike I enjoyed watching you explain what OT is all about , very interesting......I am from Bradenton , Florida , have had OT for many years , can not stand for more than a few seconds and it has gotten worse thru the years... would like to find someone in my area just to have something in common with as people really do not understand what you go thru everyday, tried all the drugs nothing helped, tried acupuncture, exercise, etc . In watching your you tube I noticed you have a stoolwith wheels and also adjustable and wanted to know from you or anyone else that is reading this , has it helped getting around? I have a tall bar stool but not very helpful....do not use any devices outside of the home even thou I struggle everyday but unwilling to give up or let it get me down. Would also like to know if there is any compensation for people like us. I just have my regular SOcial security and also pay for my blue cross supplement insurance ...maybe I am missing out on something and do not know about. Also can we get a credit for property tax if we are disabled. Just do not know what is out there for us and maybe someone can help. I am active where I still work at the local theater volunteerwhich has plays and musicals , I do not tell anyone I have this, just do not usher anymore but give out hearing devices or lean on the wall to take tickets, help out in church also help people by cooking for them that are ill, it makes me feel good to help and makes me not feel down on myself. Would love some feedback ....and a cure for what we are challenged with...
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Dottie

I found several options for low stools available on Amazon, you will want to check the minimum and maximum height to make sure it would be a good fit. It would be interesting to hear how many people are using something similar. You some other very good questions, hopefully others will have some thoughts to share.

Image
Boss Caressoft Medical Stool, Beige
Boss Beige Caressoft Medical Stool W/Back Beig
PARTYSAVING Extra Large Adjustable Hydraulic Swivel Salon Stool Chair for Massage Spa Tattoo Beauty Seat APL1159, Black
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: How is everyone?

Post by gardenlily »

Good morning, everyone,
Since my diagnosis in March of this year, I have been taking clonazepam(beginning with a small dosage, and gradually having the dosage increased). However, after a few weeks on the stronger dosage, I realized(as did my husband) that I was becoming quite "zombie-like" and my personality was changing drastically). I contacted my neurologist and we agreed that I should return to taking 0.5mg in the morning and 0.5mg in the evening, and this has helped return my mental health to "normal" again. :lol:

I find that I am getting some relief from the tremors but when I have exerted myself too much(standing in line at stores, too much housework, etc.,) I become very tired and the tremors return with a vengeance. :| I was wondering if other people have experienced the same sort of thing and if they have found ways to cope with it(other than looking for the first available seat!!).

I will be following up with my doctor in July and I have been trying to keep a running log of how I feel during the day/evening. Has anyone tried any specific exercises or massage therapy to help?

I must say how appreciative I am to have found this forum and to know that "one is not alone" with this. Things could be a lot worse, and thankfully, they are not!
Keep well everyone!
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi Gardenlily: Adjusting dosage and times meds are taken is normal. There is nothing that makes our tremors stop completely it just lessens their onset time. Sometimes it means changing to another med completely. Regardless by the end of the day we OT'ers are very tired if we over exert ourselves as you have found out. Nonetheless you are learning very well your challenges and please keep us informed on your coping with this bane in our lives.
Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! My OT friends: This is a reminder for our OT friends who have had OT for a number of years if they would please give a catch up history of how the time frame of their average day has changed since the begaining of their OT symptoms. The website is a great scource of information about OT from those of us who have this ban in our lives and we must continue to discuss the changes we feel with our OT. As for me I have had OT for 30 years and my standing time is only seconds and not easy to cope with any longer. However my walking distance remains good. How are you doing ? Gloria
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Jane has posted an interesting poll for people with OT. To insure that the poll is only taken once, you will need to be logged into the forum to take the poll, but the results are posted anonymously. You can read more about it and participate from the link below:

Link to OT Poll
dottiesport
Posts: 24
Joined: Mon Nov 28, 2011 10:07 am
Location: Bradenton, Fl.

Re: How is everyone?

Post by dottiesport »

Finally bought my stool with the back and wheels and is adjustable to different heights.....so far love it....I use to wash clothes and sit on the floor and go from washer to dryer now I just roll from the washer to the dryer and sit and fold the clothes from there....also going thru the closets to get rid of clothes , use to stand and grab one item and have to sit this has made life a lot easier , I know I will find a lot of other uses for it and if anyone would write what helps them, it would make things easier for all of us...I first had bought a high stool no wheels and had to keep picking it up and then it was not always the right height........I also go to the gym three times a week and do the treadmill, bike and row machine, do not find it has helped with my balance but helps me feel I am doing something good for my health....Hope to see more comments on this site.....
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Dottie: I have a question, I gather that most of your great exercise program to keep yourself in good health is inside at a gym and you do not mention going for walks outdoors which is no. 1 for most OT people therefore is it the Florida heat that you find indoor exercising more pleasant ? My aunt who lived in Florida worked out at the gym constantly and lived to ninety four. Just interested ??????? All the best , Gloria
dottiesport
Posts: 24
Joined: Mon Nov 28, 2011 10:07 am
Location: Bradenton, Fl.

Re: How is everyone?

Post by dottiesport »

Answer to your question Gloria , one reason I work out at the gym is yes it is hot in Florida and people want to stop and talk which I cannot do and seeing other people also work out, time goes by faster and easier to workout when others are doing it the same time ...I did full marathons all over last one in Alaska raising money for leukemia and stopped at the age of 67 as my knees went bad and had to have replacements which they are fine now , even forget I ever had it done as they are very flexible, so even thou I cannot stand for more than a couple of seconds i
keep very active as I do not want my OT to take over my life ...glad to hear that you do exercise by walking , we cannot give up to the challenge we have but sure wish we could find a cure. I want to thank you and your son for all that you do for OT. Nice to look at the site on what people are doing and helps get idea etc.
franann50
Posts: 19
Joined: Thu Jul 12, 2007 10:28 am
Location: Brockton, MA

Re: How is everyone?

Post by franann50 »

Hi Dottiesport ( hope I got that right)
I have had rolling stools for s few yes now and couldn't do without them! Ad you said- laundry is soooo much easier!! Cooking, just getting around the kitchen- what a lifesaver! Now I just need something to help with making the bed- instead of sitting while I go around each side!!! Haha!
I am looking for anyone in Massachusetts to connect with. I think that would be helpful
Oh! I also have a cane seat!! Not a stool- more like a sling seat. It is priceless when standing in line at grocery store etc. I am OK walking around store for short while then lean on shopping cart and head for checkout. Open my slingseat and unload cart. By then I can walk again!!
Fran in Massachusetts
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi All: As you might have heard most of the USA is undergoing a heat wave as well as heavy storms. I have found heat & humidity does not go well with my OT in fact it does exacerbate it. Thanks for air conditioning inside however my garden is outside and it needs me desperately because I'm in the middle of making a few changes. Tried early mornings but that is not working because the sun comes up early too and humidity can't tell the difference between day or night .
Does heat and your OT not get along too ? Gloria
franann50
Posts: 19
Joined: Thu Jul 12, 2007 10:28 am
Location: Brockton, MA

Re: How is everyone?

Post by franann50 »

I agree!the heat and humidity are not good for me either! We are in Massachusetts (anyone else from Massachusetts?) and it'seems we are lucky compared to many other States . Thankfully no floods or tornado, etc.
Guess we just plug along and do the best we can ,while we can.
Hang in there-soon we will be shoveling snow!!
Fran
kellytherev
Posts: 7
Joined: Sat Feb 13, 2016 8:55 pm

Re: How is everyone?

Post by kellytherev »

Hello Everyone, (especially Mike).

I am very much not done with exploring options. My manifestation of OT means that I have significant barriers in my role as the primary breadwinner in my family. I am an Episcopal Priest. I sit during worship. I use a cane when on TV. I'm 39...with 6 years of symptoms behind me. I am headed to Mayo in Sept.

This condition reframes just about everything I do. Yes, I can serve well with a tremor, but I rely on my husband to do most of the house work. I have cut back on travel. My kids know that they cannot hug me while I am standing.

I am simultaneously successful in accepting my limitations, and fiercely pursuing non-pharmaceutical treatment options. Every drug I have tried has been terrible.

I'm happy that you're in this community. Please keep your posts current. My morale is improved knowing that there are others out there who haven't given up.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Kelly: " Stacking coping skills" will help your everyday life with OT ! Please keep us posted how you are doing and ask questions of all your OT community of friends.

All the best, Gloria
shakeylady43
Posts: 13
Joined: Sat Oct 25, 2014 2:33 pm
Location: troy illinois

Re: How is everyone?

Post by shakeylady43 »

Just heard from Dr at University of Florida who stated they hope to start trials in August on local patients with OT. If they are successful he will again contact me. My question is have any of my OT friends in Florida been contacted?
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