How is everyone?

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Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello all...

It has been quite a while since I have posted, but decided I would today, with a question. I think I saw in another area "Has anyone experienced this?" ~ and I have experienced something very different ~ for me.

This past week, I have experienced chills and fever in the early morning hours. Chills lasting for a couple of hours or more. I would add more blankets, no help. Chills more severe than I have ever experienced in my life. Temperature from 100 degrees to 102 degrees ~ this just in early morning hours. Early Tuesday morning I awakened and my bedding, night gown, pillow and hair were soaking wet. Something else new for me. Nothing during the day. This has made my OT sooooo much worse, and has made me much weaker; has this happened to anyone else?????

I have no cold, no sore throat, no cough, no ear problems ~ nothing. Of course the severe shaking from the chills make my whole body sore and exerts a lot of energy, thus, I am tired the next day.

Monday, the 29th of February, my legs were very weak, much weaker than usual and I was using my walker (which I hardly ever do). We had just finished dinner and I was going from the kitchen to the bedroom; I could feel my legs getting VERY weak and I knew I was about to fall. I was trying to turn my walker around so I could sit, before falling; didn't make it. My legs were like 'wet noodles' and just gave way. I fell from a standing position to the floor (which is tile) flat on my bottom ~ FIRST time I have ever fallen!

It was quite a hard fall. I hit my shoulder on a china cabinet and my head hit the wall. Paul came running and asked what happened and if I was okay. I explained what had happened and said, I was okay, just in a lot of pain.

He got me up and I made it to the bedroom. I went to the doctor Wednesday, 2nd of March, then for blood work and x-rays. Nothing was broken, just badly bruised ~ my bones are strong. For that I am thankful.

I'm still using my walker in the house, having great difficulty walking because of pain, but "this too shall pass".

I just wanted to know if anyone else has experienced OT getting worse after being ill.

So sorry we will not be attending the Houston meeting ~ would love to be there and see everyone, but just wasn't meant to be this year. We can only hope we will be able to make the next one. I know Pat will do her usual excellent job of note taking and post them on the Forum for all who could not attend. Thanks Pat. Of course pictures would also be appreciated.

Betty
Last edited by Betty on Fri Apr 01, 2016 9:09 am, edited 1 time in total.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Oh! Betty, I'm so sorry to hear about your strange experience! Did your doctor think it might have been a fast moving virus?? The fact that your OT has worsen makes me wonder if possibly OT is connected with a virus and in your case a reccurring one. It will be interesting to see if there are any OT friends who have had a similar experience or if they have reason to believed that their OT was caused by virus in their history.

Will certainly miss you and Paul at the OT meeting in Houston but please take care and keep me posted on how you are feeling. Gloria



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Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

My dear Gloria,

You are always so prompt to reply to all messages and I do appreciate your prompt reply to mine. I hope to hear if anyone else has experienced anything like this ~ it is so very strange.

My doctor couldn't find anything wrong with me; did mention there is something going around, but I didn't present with any of the symptoms others did. He was at a loss as to what was going on with me. At his office, I had no fever, that only happens in the early morning hours. I haven't experienced anything in a couple of days. I always seem to be the 'odd ball out'.

I don't remember having any sort of virus when my OT started in 1994. The only thing I can say is...at that time I was under a lot of stress taking care of parents, in-laws and my aunt. We all know stress in NOT our friend. Maybe one day the doctors will put this puzzle together.

Again, thanks for your note and enjoy your trip to Houston. Please give my best to all there and my love to you, Beth and Jeff.

Your long time OT friend,
Betty
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: How is everyone?

Post by Nin »

Before I got my Cpap machine, I used to wake up sweaty. Not with a fever though. Have you ever been tested for Sleep apnea? The lack of oxygen while sleeping can cause all kinds of problems besides sleepiness. That being said, when I'm sick, my OT is much worse. I guess stress is stress, be it emotional or physical.
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Nin,

Thanks for your reply. No, I have not been tested for sleep apnea, but am well aware of what it is. I don't think that is my problem, it's something else, yet to be determined.

My husband has it, has had surgery for it and our older son also has severe sleep apnea. He also had surgery, but it didn't help him. He is now using a CPAP machine and it has helped.

You are right....stress is stress whether it is physical or emotional.

Again, thank you for your suggestion. Take care of yourself.

Betty
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Re: How is everyone?

Post by Chris »

Hi Betty
So sorry to hear of all your troubles. I do from time to time get a low grade fever and chills but usually in the evening. I have trouble getting warm and my whole body shakes like crazy for awhile. I am not sure why I get like this but I have put it down to over doing things and my body is just telling me to slow down or I have picked up some sort of bug and I am just fighting if off. I too am really sore afterwards probably because of all the shaking On the whole I am pretty healthy. My tremors are definitely a lot worse now and I find my legs are almost hard to control at times...I feel like I walk like a penguin when I first get up and start walking.
My husband and I will not be going to Houston as well but really hope we can attend the next time we all get together. We were really hoping we could make it but we have too many other things happening in our lives right now. Take care and hang in there and hope you feel better soon. Chris
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Chris,

Thanks for your reply; I know by the end of the day, I am spent. I don't experience any sort of low grade temperature as you do, I am just very fatigued. This was my first experience with such severe chills and fever. Still have no answers, but perhaps one day.

I am regaining my strength, my legs are feeling a bit stronger (but not truly strong) and I am walking without my walker as much. I am VERY careful ~ certainly don't want another fall.

Sorry you are unable to make the Houston trip this time; perhaps we will all make the next one.

Take care of yourself....

Betty
jitterbug2
Posts: 16
Joined: Fri Sep 25, 2015 11:24 am

Re: How is everyone?

Post by jitterbug2 »

Hi, Mike,
Great to meet you and the other members of the OT Gang in Houston. I took your tip and upgraded my homeward flight to Premium. I figured that 170 Euros was a fair price for an aisle seat with free leg room and a reclining seat, however, within an hour the empty seat accompanying mine was given to a 300 Pound German Biker and the snug armchair provided by KLM was no longer habitable. This meant I could not sleep properly and woke up with a bad headache and was unable to stand or walk. As I never normally have headaches (not even with hangovers) I attributed that to the lack of oxygen in the cabin. This might support your idea of oxygen as a reliever for OT symptoms. Worth further investigation, I think.
All the best
John
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! All: What a wonderful meeting! I was so happy to be with OT friends both new and old. As we all sat around the table of the Houston meeting there was a feeling of not "being the only one", certainly a rare experience for those of us with our OT. We shared our life stories and asked questions that had meaning by possibly matching a life experience. OT is a puzzle indeed but by sharing history of our experiences such as onset with age, or if you think you know a possible cause of yours, or things that help or things that exacerbate etc. I hope ALL OT friends will post updatings of their OT on the website so we get a better understanding of the progression of this ban in our lives. We are all part of this puzzle so please be a continuing contributor of filling in possible parts. I will look forward to your postings, this will also help the medical field to better understand our lives. Gloria
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

RTV NOORD has posted a news story on Orthostatic Tremor.

The story and video is in Dutch. I am sure that everyone can understand the impact of Orthostatic Tremor from the video even without the words.

(unfortunately I don’t speak Dutch, below is a computer translation of the text from the story)

Many thanks to Mieke for helping to spread awareness and understanding of OT.

__________

"Mieke can never stand with rare disease"

Mieke Vonk from Garsthuizen suffers from a rare condition that receives little attention. She and her husband traveled to the Netherlands to find out what she has. It appears to be orthostatic tremor. In other words, she can not stand still. "Very simple things are difficult. Vacuuming, washing, hanging the laundry, you name it. It's all difficult, 'says Mieke. The grocery shopping, shopping or to a party. It's not easy to do. "If we have to go shopping, then she would run through the shop. queuing is not possible, so we go quickly to the car, "says her husband Joost Vonk.

No brain surgery - Drugs are there, but these make Mieke very drowsy. That's why they want to stop using. Major surgery and brain surgery she feels is not appropriate. "I especially hope for an understanding of my condition. A lot of people get depressed with this disease because they are not understood by their surroundings . In Netherlands there are forty to eighty people with orthostatic tremor.



Link to RTS NOORD article and video
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Good video, it did not matter that she was not speaking English, watching the movement of her OT body I knew exactly what she was feeling, the stress that she had little time to accomplish the chore she was trying to finish. Gloria
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Tigermoth has started an interesting discussion about creating an informative letter that describes OT and it's challenges. First she created a list of ways OT impacts daily life and then her neurologist drafted a letter. She found the letter to be a very helpful tool, especially since it is such a rare disorder.

Have you had a similar letter created by your doctor/neurologist?
Do you have any ideas on the topic?
Would it be helpful for your doctor to write a letter?

You can read more at the following topic: LInk to discussion
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

"How is everyone?" I guess it is my turn to update where I am at this time. Because OT is progressive in the sense that we have less standing time as the years goes by and I have had OT for 30yrs so it is reasonable to say that most of my coping skills indoors and out for whatever standing situations I'm confronted with I must sit almost immediately to do ANYTHING !! Walking is still the best thing I can do for my "misinformed legs" . Therefore for me a nice heal-toe placement for my feet on the street, deep breathing and a good pace as I walk up and around my neighborhood streets works well for me. Many of my neighbors are walkers too but the hard part is I can not stop and talk to them but most of them understand. Some will walk with me to my house and we will stop and talk sitting in my backyard. Most like my garden and ask for tips for theirs. I kid them and tell them to get " the LOOK " my garden has you must create it "sitting down"..... True, life is harder and more tiring as time passes but doable !!

How are you doing with your OT place in time?? Please report how you have structured you life with OT. This gives ideas to all . Gloria
shakeylady43
Posts: 13
Joined: Sat Oct 25, 2014 2:33 pm
Location: troy illinois

Re: How is everyone?

Post by shakeylady43 »

Last week I heard from the study on OT being conducted in Florida. Waiting for more information to be sent. One point they highlighted was that they hope to have OT participants who live close to Gainsville, Florida. Is anyone aware of anyone that has been selected for this study?
Lake of the Woods
Posts: 263
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: How is everyone?

Post by Lake of the Woods »

Hello,
I know personally of two OT people registered to participate in this. Last I heard, they were waiting for Florida people to contact them.
I know they will be reporting back to our website once they have more info.

Peggy
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