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

LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: How is everyone?

Post by LMP1 »

Hello Mike
Yes, your video describes it all very well, although when I sit down again my legs do take a few minutes to settle. They feel like there is an electrical current running through them until I am completely rested. I also notice that as well as shortness of breath, I start to sweat.

I am currently trying to get my body back to some "normality" after a stressful couple of months while waiting on the results of medical tests my husband was having. He had been unwell with continuing pain in the stomach region and early tests throwing up some "curly" results for the doctors. Of course, human nature being as it is, we and the doctors were thinking tumors, mainly because of his family history - father dying from pancreatic cancer, and mother having bowel cancer. Just on three weeks ago after he had an MRI, we finally had a result. Gallstones had made their way into his bile duct, causing a blockage, and this was causing serious infection. The Specialists didn't want him to go back to work on the Chatham Islands until he had surgery, so the following week we flew to Wellington for him to firstly have an endoscopic procedure to remove the stones from his bile duct, then the next morning to have keyhole surgery to remove his gallbladder. Unfortunately, during the surgery another stone was found in another branch of the duct, so it was back to theatre later that day for another endoscopic procedure to remove it. With two very heavy sedations and a full anaesthetic in less than 24 hours, it took a toll on his body (and mine!) and they were very concerned at his shallow breathing when he came back to his room. I sat with him for nearly two hours poking him to make sure he was breathing.

By the next morning my OT was kicking in big time - I guess I managed to keep it at bay up until then - so one of his nurses saw me at my shaky best. I took the opportunity to tell her about OT ....... so, that's one more person who has been made aware of what this frustrating disease can do to us. We returned to my home town of Blenheim where my husband has been recuperating. I thought things for me would settle down again within a few days, but I'm finding fatigue is still leaving me feeling very 'flat'. It is incredible what a bit of stress does to us.

Gloria, good luck with your decision on knee surgery. The surgery that I had on my foot last September was a big success - no more pain when I walk - and I'm so pleased I went ahead and had it done, despite my big concern that it would trigger more shakes from the OT. My fears were unfounded, so much so that I had surgery on both hands earlier this year to release tendons, without any affect on the OT. In fact, my husband's surgery has generated more problems for me than my own.

Regards from a very frosty and cool Blenheim.
Lynette
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Claudia a member of the French TOP/OT group traveled with others from the group and has shared some wonderful photos. Merci!

"Last week we met for the second time in Franche-Comté around BESANCON, PONTARLIER, MORTEAU, and NEUCHATEL IN SWISS; 5 top, 1 driver and 1 photograph !
It was a several days meeting and very nice one !
Chris Taline Claudia and Nathalie went from Alsace, Katia from Sarthe, Marie-JO welcomed us very kindly and 2 other friends with TOP joined us.
We spend great and happy moments ! "

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

Re: How is everyone?

Post by gloria »

H! to our French OT friends: I'm very happy that you were able to have a GET- TOGETHER. I always believe it is the most rewarding way to chase the feeling of OT loneliness away. For years whenever I have gone to a OT meeting and watch a new OT person walk in thru the door and how quickly realize they are not " ALONE ". I have been to a number of meetings and I still feel I'm in the comfort of " my world " and no explaining necessary. Thanks for posting, Gloria

PS: If any of you have not registered on the website, please do we would love to have you as a member.
andreamartinez
Posts: 3
Joined: Thu Jul 23, 2015 10:12 am
Location: United States

Re: How is everyone?

Post by andreamartinez »

Hi I'm very much okay. Very thankful for helpful ideas in this forum
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain
Contact:

Re: How is everyone?

Post by MikeS »

Hi Everyone
Well its that time again ..time for a catch up .So what's been happening ?
My daughter finished her PhD and is now Dr Sarah Senker so I'm even prouder of her than usual but I'm not sure that I can be because she has always made me proud ever since she was tiny.
My health is pretty good .The OT seems to get worse in the summer and I'm sure its progressing a bit ,I have a question for you all Has anyone else lost their sense of smell ? T he reason I ask is because I was out with 2 of friends who happen to suffer from Parkinsons (yeah I mix with a wild bunch)and we were discussing cologne and I said although I wear it I have no idea what it smells like because I have no sense of smell and they said that losing your sense of smell is an early signs of Parkinsons and they had both lost theirs, Here's an article

https://www.michaeljfox.org/understandi ... smell-loss

I have never read anything about it re OT and I do not recall it ever being talked about at any of our meetings with researchers or Drs. Please let me know
So this is the first September after our meeting in Omaha where it was decided that it would be OT awareness month and thanks to all the committee and a special thanks to Patricia for the letters and press release which have been sent out .
Our English speaking paper here in Spain ran it and I am also doing an interview on the 29th on Talk Radio Europe and to be honest without the kick up the backside from Patricia It wouldn't have happened my end So big big thanks .
I'm off on some more travels soon my Godson has decided he wants to celebrate hi 21st birthday in Miami so off we go...I'll then 'pop' over to Las Vegas just to check on how the poker rooms are doing !
I'm also going to go yo Houston for the meeting in March so hopefully Ill see some of you there
In the meantime
Keep smiling
Mike
:)
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Mike

All good news! and congratulations to your daughter too! PhD... with your genes? :D

all the best

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

Re: How is everyone?

Post by Betty »

Hi Mike,

It's been a while since I have been on the forum, but is always good to read your posts.

As Jeff said....congratulations to your daughter on her PhD.

Also, wonderful you were able to get Pat's news release into such a large paper. When you have your interview the 29th on Talk Radio Europe, do you think you will be able to get a copy and have Jeff put it on the forum for all to hear? That would be wonderful.

Take care and safe travels.

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

Re: How is everyone?

Post by gloria »

Hi! Mike : Once again you are always there with great ways to introduce OT to the world and your interview on Talk Radio Europe on the 29th, is a great media to spread the word again about OT as it was with the 2010 broadcast which brought OT Awareness to a more international level. Yes, Pat really compiled an amazing news release, many thanks to her too. Enjoy your upcoming traveling and good luck when you check out the poker rooms in Vegas. Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Mike's question for all to answer "How is everyone? is a comforting way to stay in touch as a group of understanding friends and how we are living a life with OT as part of it. I believe it is a good way to study and compare perhaps the progression of OT. We are a special group of friends that supports each other so if we have not heard from you lately now is a good time . Thanks, Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! All: Here is the latest report on my deciding not to have knee surgery. I have been analyzing my existence with knees that are truly bone on bone for years but I have been living with this stituation for those many years and the degree of pain is the same and I have been tolerating that amount for the same amount of time. I have been discussing my situation with family, neurologist and doctor friends and we all agree I will do better not having surgery but rather intensive physically therapy to strengthen the mis-used and wrong messaged leg muscles. I'm going to a group of highly medically trained therapists and I was scripted to them by my neurologist who thinks this is the right procedure for me to follow. I go twice a week for this physcial therapy and already feel pain reduction in my knees and legs. Anyone else using physical therapy ? Gloria
shakeylady43
Posts: 13
Joined: Sat Oct 25, 2014 2:33 pm
Location: troy illinois

Re: How is everyone?

Post by shakeylady43 »

Just had to share my adventure of this past Sunday. I have always wanted to do a hot air balloon ride and was given one for my birthday in August. My son and daughters were concerned that I wouldn't be able to take the length of time standing. I wasn't sure myself!!! BUT, I was determined to do it. AND I DID IT. One beautiful hour plus hour ride over beautiful wooded areas of Missouri. The worst part for me, was the standing around before and after the ride and I did a lot of walking because there was no place to sit. On the ride I hung onto the side of the basket and because of my will to prove I could do the ride, I did. I'm not sure how much of my body was being held up by my feet. I must say Monday my body was completely worn down:) What a way to get completely exhausted. :lol: MaryAnn from Illinois
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Congratulations on a successful flight! and a whole lotta' will power too...
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Standing for an hour ,Wow!!!!!!!!! Now that you have had your wish do you think you will try it again? Gloria
shakeylady43
Posts: 13
Joined: Sat Oct 25, 2014 2:33 pm
Location: troy illinois

Re: How is everyone?

Post by shakeylady43 »

Yes!!!!!! As long as my arms can hold me up....I would go again tomorrow. I have never felt so at ease. It was so great to be able to "hang on" for the hour. I can no longer stand unaided for more than about 30-45 seconds and this enabled me to be at the same height as all the other riders.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi Again all OT friends:

From the very begnning this "How is everyone ?" section of the website started by Mike, has been a place where we all feel connected and closer to other understanding friends. It is not quite the same as going to a meeting of OT friends but it is very comforting nonetheless. OT is a lonely disorder but here we can chat and question without long explanation. I spent quite some time this afternoon going over a good part of this section and it is so nice to read the input with the spirit of helping each other. My latest pondering has been should I have knee replacements but my final decision was not to but rather I have been doing extensive leg muscle strengthening instead. This makes my OT legs feel more steady while walking. It does not make my standing time any longer however because I'm in the late stages of OT and seconds are still all I have. This is where I am today so as Mike would ask "How is everyone?" As always , Gloria
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