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 »

To all my OT friends may your Holidays be filled with Joy and we have Peace on this EARTH !

There are some of you that I have known since the very beginning of the website, starting in 2000 with only two pages but look at us now, we are a OT Community thanks to the foresight of my son Jeff . We have remained friends no matter how long in time or how far we are from one another. The reason of course is we are bonded with OT that has changed the way we live from the norm. We are VERY special friends because we get understanding from one another that we cannot find from those around us. We communicate by posting our introductions, histories, new information , asking questions and helping others. Updating how we are doing as the years go by gives another ongoing picture of life with OT. We learn as time passes, our bodies sometimes develop other problems that have associated pain or other symptoms that mistakenly we think is part of OT when it could be from some other developed ailment that should be investigated and treated. Osteoarthritis in my spine is causing a lot of pain in different parts of my legs as it presses on the nerve messages to my muscles. Interestingly,most of the pain I feel starts when lying in bed at night. My neurologist and I think positional sleeping pressure issues are involved .

“ Best medicine” to date is physical therapy, exercising & WALKING! Oh! yes, 72% dark chocolate, too !

How are you doing?????? Gloria
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Gloria,
Sorry to hear about the spine problems. It can be very frustrating and painful. Someone told me the other day that she did not mind getting older but aging was not good! When I get a problem and they say it is "age related" it is annoying to say the least.
Best of luck with the other health issues and I like the idea of "chocolate".
Merry Christmas to all! Peace to all in 2014 and beyond.
Lorie M
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

OT Friends :I have a request of interest to make of all OT friends . I’m hoping you will please make an assessment of your OT life from the beginning to the present and what observations, adjustments and accommodations you have made at different stages both physically and maybe psychologically. This will be a response of members helping each other with their story reviews. “ Comparing notes” is a very friendly experience. .

Looking forward to your updates, Gloria
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

In the beginning, I was in my mid forties and thought that I had Parkinson's or some weird side affect of menopause. My hands shook also, so I was told I had Essential Tremor. Three doctors (2 neurologists) didn't have a clue about my legs not working right, and one just told me to teach sitting on a stool and take beta blockers. The meds caused me to become depressed, but when I quit taking them, I became my usual happy self again. I quit my job due to worsening handwriting and balance problems. I use a cane now, to let people know that there is something wrong w/ me and hopefully they will let me have a chair. My father started showing signs of OT in his 80s, long after I got it. I go regularly to the gym and walk the beach weekly. My husband thinks I'm getting worse, but I tend to ignore my tremors and do the best I can gardening and house chores. I really miss having a job and sometimes feel like I'm not very useful. I just had a double mastectomy, so I'm more focused on taking care of the long healing process that comes w/ cancer. Even though OT has taken away things I used to do (like snow skiing), I still feel blessed to have my family's love and support. I try everyday to be more understanding w/ people around me because I don't know what health issues they might be suffering from. There are lots of people who have conditions that can't be seen just by looking at them.
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

Just had a 10 min sprinkle of snow in Southport... Makes the summer house look like a winter palace.
Wishing all Worldwide O,T,s Happiness and Best Wishes for 2014.
Regards Maureen
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Maureen: Thank-you for always remembering your OT family thru out the year " by reporting in frequently" and now with your Holiday Wishes. Have a Happy too! Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Cindy: Thanks so much for your reply to my posting requesting reviews "of life with OT". You presented not only a picture of your experiences but you hold such understanding sentiments for other people not knowing what health issues they might have. Well stated, Gloria
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: How is everyone?

Post by golfnut »

Hi all,
I sometimes feel as if the OT is worse in the morning - just after getting up. But that it then settles down to a "better level" when I've woken up properly and the body has moved about a bit..

Anyone had similar feelings?

Best wishes for the new year,
the nut
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,
My OT is very bad when I first get up out of bed or if I get up in the night for a visit to the bathroom. Once I get moving around it definitely improves and my best time is the morning.

At suppertime it is not good again, trying to deal with kitchen stuff.

Would you consider using your name to sign your messages rather than using your what I assume is your "user name" - "golfnut".

It is nice to refer to someone by their proper name - using "golfnut" does not seem right. Thank you for considering this.

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

Re: How is everyone?

Post by gloria »

Hi all,

I've started a new discussion on Chair Yoga and exercise. The link also contains introductory video lessons, 15 min, 30 min sessions etc. OT and exercise don't always get along. Let's discuss what works for you, chair yoga or other things too!

http://bit.ly/chairYoga_discussion

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

Re: How is everyone?

Post by gloria »

Hello All:
How is everyone ??? Sometime ago one of our OT friends posted a question about aging with OT. For some reason that question was never answered. Recently I thought of a lovely lady who might be the perfect one to answer that question for us, read on :


For some unknown reason Gloria asked me to write a little article about OT and OA. OT being Orthostatic Tremors and OA being Old Age! I have no idea why she choose me, I’m 92.

The first time I noticed leg tremors is an incident when I was still working. I had a job at Riverview Medical Center, Red Bank, NJ, managing the Department of Pastoral Care. We were having a meeting of all our clergy and was standing in back of the room to greet the different clergy as they arrived and my legs were shaking. I wasn’t nervous , I loved what I was doing. ( I was in my late 60’s) . Of course the trembling incidents increased and when I was in my 70’s I started doctoring. The first neurologist I went to was very nice but admitted he was stumped. He did not know what was wrong but recommended I see a Dr. Alan Pertchik ( whom I am still seeing) and at that time head of Neurology at Riverview Medical Center. Dr. Perchik diagnosed my condition as Orthostatic Tremors and encouraged me to see other specialists which I did. We doctored from Massachusetts to Florida. They all agreed I had OT, but none of them had any different to offer in the way of help than Dr. Pertchik did. That is, experiment with every medication there was. After years of doctoring we have zeroed in on Gabapentin and Proprandnol. I don’t think they help much, but when I try to cut back on them I knew it. I also use a walker with a seat full time. I’m completely dependent on it. I’ve had extremely unpleasant side affects with my OT. When I have that overwhelming need to sit and can’t I have had anxiety attacks , I freeze in place and I have even had a seizure. Not much fun! In order to avoid these episodes I go out of my way to avoid situations that will bring these these attacks on. Now in the meantime something else is progressing, I’m growing older....... considerably older. We moved to a retirement facility, one of those places that offers everything from Medical Center to hairdressers, etc. . Get the picture! We have a nice two bedroom apartment, are very comfortable and secure. About a year after we moved here my husband died. I devastated , now 85. Age is something you don’t want and it isn’t just grey hair and wrinkles, it is aches and pains, Arthritis, and memory loss, bladder problems, orthopedic problems, blood pressure problems , lack of strength, lack of ambition.... oh! a whole bunch of unwelcome problems! Most of us keep smiling, enjoying the good times, keep busy and talk too much. ( that’s me ). But when we seniors have miserable OT and OA the problem obviously is exacerbated, either way. I was still playing golf when I first contracted OT, I was only 65 maybe 70. Today I could no longer stand in front of a ball. Club in hand , swing no way. The few people that I know with OT are pleasant, informed, optimistic people but of course they are young relatively speaking!!! Eleanor Thomson

Thanks Eleanor, great writing!!! Gloria
Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Re: How is everyone?

Post by Abinadi »

Thank you Eleanor.

You are now a new role model for me. At age 73, I have known that I have OT for 19 years now. After hearing your story as well as others, I have determined to forgo any medication for this disorder as the tradeoff of benefit vs costs and side effects do not seem worth it to me.

Regarding aging, you know the funny thing is that I have been aging ever since I was two years old but I seem to notice the effects of aging more now than I used to. I wonder what that's about?

Keep on smiling and shake as little as possible!

Rich
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

Thank you Eleanor, I agree with Adinadi you are an inspiration.

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

Re: How is everyone?

Post by LMP1 »

Hello All

In response to Gloria's request about posting on life with OT, I thought it was about time I made an updated contribution. For me and my husband it was a great relief to be given a name to what was ailing me in 2009 when I saw my Neurologist - no relief in that he told us there was nothing he could do to help me except advice to keep walking, but just relief that this 'thing' that was going on with my body had a name. We set too and found out as much as we could, and finding this site of Gloria's was of great benefit. At that time I was living on an Island, Chatham Island, 800km off the east coast of New Zealand - very isolated - so having this web site to refer to decreased my isolation. I continued to work part time after my diagnosis, but made sure everyone in the office knew about the condition - they learnt to keep out of my way when I was on the move!! As things deteriorated, my Neurologist suggested I start taking Clonazepam. Having read about the debilitating effects of the medication, I decided not to take it as I wanted to be in control of my daily routine. Fatigue was taking a toll on my body so I gave up work. I continued to walk as much as possible and we got another dog as further encouragement for me to walk daily. I also noticed that the tremor had moved into my hands and arms leaving me much weaker when doing things like opening a jar.

In 2012 as the pain in my legs began to take a toll on my health, we began to talk about me moving to a warmer and drier climate on Mainland New Zealand. The Chatham Islands can be very cold and damp, especially in the winter, and this was aggravating the pain. To make the move would mean my husband and I living in separate parts of the country - he on Chatham Island and me in Blenheim at the top of the South Island. It has now been just over a year since our new living arrangements started. I have certainly enjoyed the beautiful sunny days that Blenheim offers, but do find the summer heat can be a bit much at times. Our basset hound, Zoe, moved with me and she and I continue to have our daily walks. It is unfortunately getting harder for me to take her out as the pain in my legs has worsened and I have now developed pain in my feet, but I know I need to do some exercise, so I just keep going. I do need to immediately sit down and rest my legs on my return from the walk. My GP prescribed me painkillers and advised me to wear good walking shoes and socks (which I already do), but I found the medication upset my stomach so stopped taking it. He did want me to stop walking but I said the dog needed her exercise and there was no-one else to take her out so I had to continue - he suggested I bike with the dog running on her lead beside me, but for anyone who knows about basset hounds, that would mean disaster as they are all over the place checking out every new smell!!!

My husband comes to the Mainland about once a month for various meetings so always comes to Blenheim for a couple of days during those trips. We also use skype daily to keep in touch. I have learnt to cope on my own reasonably well and know that our daughter is only ten minutes up the road should I need her. I try to keep the gardens tidy by myself, but the heavier work I leave for when my husband is here. I have a man mow the lawns and keep the edges tidy and I can call on him for other work such as weed spraying when needed. I've had to learn to say no to our daughter on some occasions when she needs a babysitter - we have three grandchildren (8, 5 and 3). When I first moved to Blenheim I thought I would be able to cope running after children, but over several months I found it was getting too much for me so now I say no if I'm too tired. It is hard to say no, but I keep telling myself I moved to Blenheim for the sake of my health and therefore I need to look after myself first.

I manage to control the shaking in my legs reasonably well. Whenever I'm out walking, I will lean on whatever is available (fence or lamp post) or stand astride if someone stops to talk to me - can happen quite a lot when walking a basset hound as Zoe is one of only three in Blenheim - and I use a shopping trolley for support when at the supermarket. I suspect that because I am so stubborn in not wanting to let OT take over my life, I may be doing myself some harm, especially aggravating the pain in my legs and feet because I don't sit down enough. Since the beginning of the year I have been trying to be kinder to myself, but it's still hard, especially when I see things around the house or grounds that need tidying. Last weekend I had my first bad shaking event for quite awhile when attending our grandson's third birthday. With several children surrounding him after we gave him his present, all of them helping to pull off the wrapper, I immediately felt my legs start to shake uncontrollably so had to sit down. It meant I then spent the rest of the time seated on the couch away from all the festivities, only getting up when the cake came out and happy birthday was sung. Then I stood at the back of everyone, holding onto my husband's arm as my legs continued to shake. Very frustrating not being able to join in and having to have food brought to me.

Overall, my biggest battle is still coping with the pain, especially at night. During the day when I am busy I can push the pain to the back of my mind, but once lying in bed it does tend to take over. I've also noticed when lying down that I have an almost continual quivering in my thighs (I described it to my sister as a whole lot of little men running up and down under my skin - we have to joke about it!). It makes a mockery of the experts who say we only get the shakes when standing!! I believe it's related to the OT, as it is a completely different sensation than what I've experienced from Restless Leg Syndrome.

Well I see I've taken up much more space than I intended so I'll finish now. Best wishes to those of you around the world experiencing some very extreme weather - from a very sunny and warm Blenheim, New Zealand. (Sorry, just had to make you a little envious!!)

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 again Lynette:

Thank you for your wonderful update. I know that everyone appreciates hearing about how we are getting on with our lives.

"Sorry, just had to make you a little envious!!"


Even with all of your sacrifices you have kept your humor!

There was a time when I would care for my elder son’s dog when they would go on vacations etc. However I reached a point in time when found I could no longer walk a dog because of the “stop and smell times”. I now have a cat as a pet that has his own indoor potty !!!!!!!!

Thanks again, your snowbound friend from New Jersey , USA,
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