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

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Lorie: Last night snow arrived here too in NJ and it looks like the introduction of the holidays. From the beginning of the website we have always presented walking and exercising the " BEST" thing there is for OT mobility... being "a couch potato" is not recomended!!!! Our OT friend Helen from Canada extended her expertise to us as a Marathon participant and her recommedation of walking and exercise. At our meetings you will always find her a
great example of " practicing what you preach". All the best, Gloria
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: How is everyone?

Post by gardenlily »

Just wanted to wish everyone a Merry Christmas or happy holiday season from me (Rae, aka Gardenlily)up here in Kingston, Ontario. Hope everyone is doing well and coping with this disorder.
Best wishes to you all and keep well in the New Year.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello All: Here we are in a few days it will be the beginning of a New Year ( without OT would be nice but in our reality that will not happen!!!!) I have been thinking of something that I have felt for a long time and and I have not questioned you my OT friends if you experience anything like this. The temperature that I need to sleep well in must be a very cool room temperature and the lower part of my legs up to my knees I cover with only sheet to keep them cool although my upper body is covered with a heavier blanket . I believe OT generates heat although we are not standing. Also I must lay on my back. If I do not keep that part of my legs cool I will wake up in disconfort and sometimes leg pain. Has anyone else had a similar experience? Gloria
Fiona
Posts: 8
Joined: Mon Dec 26, 2016 6:27 pm

Re: How is everyone?

Post by Fiona »

We slept last night on top of cotton sheets with the door open and the overhead fan going. 36 degrees celcius here today, and 40 yesterday. I had noticed that I am getting hotter during the night (not just now but also during winter) - I thought that was just getting older and a little closer to menopause. I wonder if it is something to do with OT, as I find myself putting my feet outside the coverings, and that works well.
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: How is everyone?

Post by LMP1 »

Hello Gloria. I have been experiencing heat/sweating in bed for a number of years and find I need to be as cool as possible or my legs overheat and ache. When they do ache, I find the coldest part of the bed and lie on my stomach to let the cold sheets ease the pain. We moved into our new home in Kaikoura in late October. We have a centralised heating system for the whole house, except the main bedroom where it has it's own system because I could not stand the thought of having a hot bedroom when we need to turn the heating on for the rest of the house.

Happy New Year to you and all our OT friends.
Regards, Lynette
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello Lynette & Fiona: Thanks for reporting that you too experience being uncomfortable with heat while sleeping ....Also I think that pain while sleeping could be "positional" .......I discussed this with my neurologist one time and she believed that might be true and possibly we individually need to find a comfortable position because of possible back or spinal problems we might have. All the best, Gloria
Nancy Linthicum
Posts: 9
Joined: Sat Nov 05, 2016 11:00 am
Location: Green Valley AZ

Re: How is everyone?

Post by Nancy Linthicum »

I have for several years needed to sleep with at least one foot out of the covers. However, if my ankles or lower leg are too far out I wake up with incredible pain, not numbness like "my legs are asleep" as i used to describe leg cramps, etc., but a very painful ache that endures for several minutes until I can rub my ankle to warm it. Needless to say, I now just let my foot out cautiously - toes mostly.

Night sweats are much worse than during my menopause, now requesting a towel on my pillow and changing gowns each night. As I have diabetes, I assumed this was an increase due to that disease but perhaps OT is involved in this extreme sweating. Nancy
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! Nancy: I don't hang my legs out of the bed, I might have tried it years ago but I quickly learned for me that I was pulling on the leg muscles when having them out of the bed not resting on something. What I do at night is I lay on my back and pull the blankets from the bottom of the bed up and off my legs to my knees leaving only a sheet covering my lower legs and feet and the blanket covering my upper body from my knees up. Sounds strange but it works to keep my lower legs cool but then again I do not have sweating problems like you. Gloria
kellytherev
Posts: 7
Joined: Sat Feb 13, 2016 8:55 pm

Re: How is everyone?

Post by kellytherev »

Happy New Year!

I will have DBS surgery #1 on March 13 at Mayo. Surgery #2 on March 20. If you have connections with someone who has undergone DBS, please let me know. Otherwise, if you are a praying person, please add me to your list.

Gratefully,
Kelly
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello Kelly: Thank you for posting your impending schedules for your DBS surgery #1 & #2. If you go to the top of this page on the left hand side you will see a black strip, click on SEARCH , type in DBS and that will take you where you can read different experiences with the procedure. Please keep us posted when your have the procedures and we all wish you the best results. Gloria
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

kellytherev wrote:Happy New Year!

I will have DBS surgery #1 on March 13 at Mayo. Surgery #2 on March 20. If you have connections with someone who has undergone DBS, please let me know. Otherwise, if you are a praying person, please add me to your list.

Gratefully,
Kelly
Thinking of you Kelly xxxx
.I am still undecided :cry:
Maureen B
Frankie
Posts: 11
Joined: Wed Oct 19, 2016 1:31 pm
Location: Cross Plains, Tn
Contact:

Re: How is everyone?

Post by Frankie »

Hello to all of my OT friends out there. I've mentioned before that the doctor has put me on Sentemet 3 times a day, for my tremors. I went to visit my sister the other day & while we were standing & talking, she noticed I wasn't trembling. I live alone, so I hadn't noticed. I'm very excited & can hardly wait for my appointment on Jan. 17th with my Neurologist. I pray this just might help someone else.


Take care & God Bless
Frankie
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Frankie: I'm happy you feel the Sinement has stopped your tremors and you were able to stand while talking with your sister. Has your neurologist taken an EMG yet ? ......... wondering if the "nervous breakdown " that you entered the hospital with was the cause of your tremors and hoping you do not have OT.

All the best and keep us posted. Gloria
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

"Lessons I have learned from my patients: everyday life with primary orthostatic tremor"
A new report from researchers : Marie VidailhetEmail author, Emmanuel Roze, Lucie Maugest and Cécile Gallea
As described in the report the format is “how my patients taught me”. Many thanks to the researchers for their dedicated work.

Click to read the full report

Lessons I have learned from my patients: everyday life with primary orthostatic tremor
DOI: 10.1186/s40734-016-0048-5 ©
Marie VidailhetEmail author, Emmanuel Roze, Lucie Maugest and Cécile Gallea
Journal of Clinical Movement Disorders20174:1
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello!

This is for Gloria, Fiona, Lynette and Nancy; I am a little late responding to your comments regarding the temperature you feel most comfortable sleeping. I guess I am STILL the 'odd one out'! :roll:

I seem to be opposite to all of you; I must have my legs (from knees down to feet) covered and warm. I also sleep with 'footies' on my feet to keep them warm ~ perhaps poor circulation ~ but if not warm, I awaken with cramps from feet to knees. We have our bedroom nice and cool, and I sometimes must put my arms out to cool off, but never my feet ~ strange!

Betty
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