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

Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello again Cindy,

I am happy if I was at all helpful to you. As for essential tremors, I don't have any problems with my head or face, just my hands and that's when I try to do some tasks. However, typing is one thing I can still do with no problems.

I most certainly WILL get in touch with you if we get to CA. It is so special to meet and talk to someone else who has OT. I think there are others who live in CA that I have seen on this site. You might go to the top of the page ~ right side ~ there is a space "SEARCH". You might type in CA and see what comes up. Perhaps someone lives close enough you could meet. If you are ever in FL, let me know and we will try to meet.

Regarding DBS; there has been some discussion on this site. As I recall, it isn't something anyone has considered doing because the neurologists don't know EXACTLY what part of the brain is affected. More is known about what part of the brain is affected with Parkinson's and even with essential tremors.

I think we need to know more about DBS before trying it.....just my opinion.

We all continue to search for ways to help tremors; one day it will happen.

Betty
lorna
Posts: 29
Joined: Mon Feb 09, 2004 8:28 am
Location: Victoria, Australia.

Re: How is everyone?

Post by lorna »

Hi All, Its been some time since I have posted anything, but do check the site from time to time. I have a question for people who are taking Lyrica. I have been on it for 8 years and I was checking Lyrica on the internet and found a forum where people discuss how they cope on it (for all sorts of medical problems). I found quite a few people complaining of protruding stomach, people saying they look 7 months pregnant, men included. I also have that problem, I hate it, even thought of having a tummy tuck. I would be interested if any of our OT sufferes have this problem on Lyrica.

I am a mad gardener, always have been, I spend as much time as possible in it and get so much pleasure out of it, but now its becoming a real struggle, mostly getting up off the ground ( is this an age thing), I have now made my vegie garden much easier, purchased metal bins and can now sit on a stool and tend to things, so much easier. I also had many roses but have had to take out half of them (very sad), as I can no longer stand long enough prune them. I did move some of them to places that I can now sit to do the job. My husband said that he would do them for me, not likely, his pruning and my pruning are completely different, plus he complains of the thorns, I am sure we would have a domestic if he did them.

I must say the past 6 months has been really hard, I find I cannot stand for more than half a minute, I am relying on my wheelie walker much more, and am getting very frustrated at times. I am now 70 and many people start to slow down, but I question myself if its the OT getting harder to control or is it age related. I am a person that has to be doing something all the time, grrrrr.

kind regards to you all, Lorna
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 »

Hi Lorna, I, too, love to garden and find it harder to do because I can stand only for a minute or so. I take a fold up chair outside so I can sit to trim hedges/flowers. Sometimes when I need to use the hose, I sit to water. One day, a man driving by saw me sitting and watering and laughed at me. I guess he thought I was being lazy. Alway, I've had this condition since my forties and I'm 58 now. I think that keeping our bodies moving anyway we can is the right thing to do, so I'm glad your still at your gardening. Hope you never give it up. I've seen something in garden magazines that one can kneel on to garden (it cushions the knees) and has rails on each side to pull you up with. I might get it because trying to stand after being on the ground is getting hard for me, too.

Did anyone see the Disneyland/World article about "rich" people who hire people w/ disabilities to take their kids in the short line so they don't have to wait in the long lines? My husband works at Disneyland helping disabled people off rides when they get stuck or the ride breaks down. A few times while at Disneyland, I have noticed groups of people doing this, (you can take a group of five w/ you). It's hard to tell if someone is disabled because like many of us, we walk fine, but can't stand for more than a minute. Disneyland is looking for solutions to this problem because there are lots of cheaters, sad to say. Here's your chance to help if you have any ideas to stop this problem.
Currently, a person w/ a disability must go to Disneyland's City Hall and ask for a handicap pass and state how many are in their party. They need to show this pass to take the shortcut on the rides that have this option (not all do). One person suggested to me that handicap people should just stay home. I thought that was really mean because everyone should be allowed to have a little fun now and then.

Regards!
Cindy
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello all,

I wanted to jump in here and add my two cents, for what it's worth! :wink:

First Lorna: I have tried Lyrica, but didn't have the side effects you described; mine were swelling of my eyes and face and I felt drugged and dull....but, I am one of those people who is very sensitive to almost all medications. The only one I have found I am able to tolerate is Klonopin, and I don't know how much good it really does for me.

Hi Cindy, it's been a while since we have chatted. I think it is wonderful both you and Lorna enjoy your gardens; I have never been one to do too much of that; perhaps because it is so hot here in Florida. However, I did have roses some years ago and they were beautiful, I did enjoy working with them.

Regarding the ability to stand; at this point my standing time is just a few seconds. Leaning helps, but then I become "frozen" and have difficulty getting started walking again. Do either of you experience this?

Cindy, I haven't been to Disney World (here in FL) in many, many years, so am unaware of what some people will do to get in front of the lines. I feel Disney will get a handle on this problem and make sure only those who really need a handicap pass or wheelchair would be allowed to get one.

You ladies keep up the gardening and enjoy the "fruits of your labor of love". :)

Do stay positive and keep us informed as to how you are doing.

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 all
I too love to garden and find it more of a challenge each year. We have huge perennial borders with some winding walkways through them. This enables me to use my little wheeled garden cart to get in and tend to the flowers and shrubs. My husband does help in the areas I find hard to reach. I have incorporated a lot of easy care plants which bloom most of the summer. We do love sitting on our deck and the various benches throughout the garden watching the birds and wildlife as well as the grandchildren playing.
I find I am only able to stand for a few seconds now before the tremor gets really intense. If I do try to lean or am in a tight space my legs become extremely rigid and I find it very difficult to get moving again. Sometimes I feel like a zombie when I start to walk again.....sounds weird I know!!
Nice hearing from everyone.
All the best and enjoy the summer.
Chris
lorna
Posts: 29
Joined: Mon Feb 09, 2004 8:28 am
Location: Victoria, Australia.

Re: How is everyone?

Post by lorna »

Hi All I am back again, had a chuckle about people using disable people to get into Dinsneyland, not surprised. What really gives me a laugh is when I am shopping with my three legged camping stool, I use it quite a lot and its mainly checkout chicks, they see me sitting on the stool and most laugh, and I look at them and say "I have a tremor and cannot stand", the look of embarassment on their faces is priceless, they will think twice about commenting again, disability in Australia is taken very seriously, haha

Yes I will keep on gardening, its my favorite past time, its where I loose myself, great therapy.

As for taking off walking, yes we all have the same problem, it takes a few steps to get going, I call it my drunken walk, very strange isn't it.

Cheers Lorna
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Lorna,

I have had experiences as you mentioned when standing (or sitting for you), in a line and waiting to pay for items. It is very difficult for me as I do not have a three legged stool. I have used my cane, but it is not helpful; it is to make others aware I have a problem.

But....before I started using my cane, I would be in a line, trying so hard to get things together and leave. My tremors would be so severe I had difficulty writing my name. There have been times when someone behind me would "sigh", indicating their lack of patience.

I have learned to turn around and as nicely as I can say, "I am sorry if I am holding you up, but I have a neurological problem and this is the best I can do. I will be out of your way as quickly as I can." They will then say, "Oh no! You are fine, don't rush!"; and I can see their embarassment as well.

We do what we must and get on with our lives.

Keep up your gardening and enjoy!

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

Re: How is everyone?

Post by gloria »

Hello Friends:

It is wonderful to hear that we have a large group of OT gardeners. It has always been my favorite hobby. Like most of you I go out with gardening stool in hand but gardening has been a challenge for me because of the deer and ground hogs who like most all of the perennials that would be my first choice.. Nonetheless, gardening for me is an uplifting and mood changing time or as Lorna says “ great therapy”. Too bad we all live large distances apart or we could start an OT Gardening Club.

Keep digging and trimming, Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello again: I'm reporting a surgery I recently had done on my foot called Arthroplasty..... anyone have the same surgery? Basically it was to remove part of a bone in the 5th toe or baby toe that was rubbing on the outside of the toe causing painful ulcers. Of course this was the first time my surgeon had done the surgery with someone with OT. Lucky me! but he did listen carefully about our problem and it became a mutual adventure for the both of us. I told him my main concern was to remain as mobile as possible during the healing process. It as been five weeks now, the first week I tried to keep the foot elevated as much as possible and then graduately increased my time walking on the foot. There was some pain and burning sensation but that is subsiding. It was a learning procedure for the both of us but it was a good experience for me again as I keep reminding all that we must be inventful in so many things that confront us but we can do it when it is a necessity and it removes a problem in our lives..In four weeks I was so mobile that I was able with Beth & Jeff to have a quick lunch with Sue Boyd in NYC as you can read about on another part of the site. I did not even think about my foot that day because it was an awesome experience to meet and talk with such a wonderful person ..........

How is everyone doing?? How about an update everyone ?? Remember we are gaining strength as a group and must continue to go forward together... As always, 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 »

Hi Gloria,

Glad to hear that your foot is healing and that it's not stopping you from getting out for some fun.

I recently had to give up my job of keeping the church kitchen clean because of my legs (too much standing). Even using a tall stool didn't stop the tremors from kicking in and knock things off the lower shelf. The good news is that a tutoring job opened up for me, so I am so happy to be teaching math again to twin girls, who have serious anxiety w/ the subject. It's wonderful to see them build confidence in this area, and it gives me a sense of purpose.

My husband and I came back a few weeks ago from a cruise to Alaska. What a beautiful place it is and the ship was very accommodating for those of us w/ disabilities.

That's all for now, anyone else willing to give us all an update?

Cindy
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Hello everyone from sunny UK (makes a change). I thought you might be interested in a seniors medical check I had recently at my doctors surgery.
It all went wrong right from the start as the appointment was the day before! Now that has nothing to do with OT does it? Anyway the young chap who was doing the medical managed to fit me in.
He asked me many questions to do with my general health and family history, eventually he needed to take my weight height and waist measurement. I explained to him that I had a condition called Orthostatic Tremor which meant he had to do the above things as quickly as possible, I think I weighed anything between twelve and thirteen stone, I was at least four inches shorter and my waist (what waist) HUGE, he was so worried that I would start shaking that he did it all a little, shall we say, fast, so now I'm an overweight pot bellied midget, oh well never mind that's the last of my worries and I ended up with quite a good bill of health, amazingly!!!
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: How is everyone?

Post by owen-lynettepickles »

Hello Patty

What a laugh I had about your medical experience - at least the Doctor took notice of what you told him about OT!! Earlier this year I moved to a warmer and drier part of New Zealand in the hope that I could reduce the pain I suffered in my legs, especially during the cold and damp conditions of the Chatham Islands. I have found the move to be very beneficial in that regard, however the general shakiness and unsteadiness (rubber legs I call it) has returned with a vengeance since I caught one of the winter viruses doing the rounds here which led to a severe chest infection, despite having had a flu injection. It has been over three weeks since I was ill, but I still get the rubber legs as soon as I try to do anything around the house or the garden. Extra things such as looking after a grandchild for a couple of hours are a real trial. This is all very frustrating after having such a good result with getting rid of the pain, so I just need to learn to be patient and take things easy until hopefully things get back to "normal". Hopefully the warmer days we have been having will help, although they make me want to get out in the garden and overdo things!!

On another note, I had to get a new Doctor with my move. On my first visit to him when we were covering my medical history, I was pleased to find that he knew all about OT so I didn't have to give him a long explanation of the condition. What a relief to find a Doctor who knew about it.

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

Re: How is everyone?

Post by gloria »

Dear Lynette:

So sorry to hear you had a bout with the flu. I hope it passes over soon. Getting sick for you is not happy thing after the great meeting you attended in Australia . I was looking at the video of the meeting and I was wondering if you can identify a picture of yourself for me if you were in one of video pictures of the event. By the way did you see the picture of Sue Boyle and myself on the website. Beth, Jeff and I were very lucky to have the opportunity to meet Sue in NYC while she was visiting in this area. She is a delightful person, sorry we do not live closer. Hope you feel better soon, Gloria
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: How is everyone?

Post by owen-lynettepickles »

Hello Gloria
Yes I did see your post about your lunch with Sue. When I presented her with the plaque she mentioned to me that she was hoping to meet you and Jeff.

The video has been broken down into several sections - I know you will definitely see me on the last section presenting Sue with the plaque. It is near the end as the presentation was at the conclusion of the day. I am also on an earlier section trying out the balance board, but would need to go back to the video to check which one it was.

Very grey and wet day here today (rain much needed) so a good opportunity to put my feet up and relax and hopefully get over these "rubber" legs.

Kind regards, Lynette
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

Hi my name is Graham I'm 69 years old and I am responding to a request from Gloria to tell my story. I was diagnosed with prostate cancer in 2005 and had Hormone therapy and went thru female menopause, I can now sympathize with all you ladies out there. I also had radio therapy which has left me with a damaged bowel and bladder, constant diarrhoea and frequent urinating. I mention this as I saw another gentleman's posting saying that he had chemo just before the onslaught of OT. My first sign was probably 2 to 3 years after my treatment. I was under the shower washing my hair and I felt very dizzy, so much so that I rang in sick for work. I then began to notice that it was difficult standing waiting for the traffic lights to change and standing in the queue at the bank. About six months later I went to my GP and then of course all the tests started, eventually I was sent to a neurologist and after a long conversation with him all the tests started, walking, standing still, standing still with my eyes closed you all know the drill, he then took me to see another doctor in the practice who hooked me up to a machine that measured the shakes and tremors. I am now seeing a neuro (John) at my local hospital. I have been subscribed Gaba pentin which as you may know is used for epilepsy. It helps slightly but all the symptoms are still there making everyday things difficult to do, just simple things like standing in a queue, I guess you just learn to cope better as time goes on. John is very kind and genuinely concerned but doesn't know what it's like living with OT. The last time I saw John he said that Val ium would take away all the symptoms but because I have an addictive nature I decide not to take it until I really have to. Does anybody have any suggestions I could put forward to John? In my experience moderate amounts of alcohol takes away the shakes and helps with my balance, go figure. Has anybody else found this. Sorry this is such a long post but it is the first time that I have been able to talk about OT to somebody that understands. Thank you Gloria and everybody for being there it has made a huge difference to my outlook on life knowing there are people who know....Many thanks....Cheers Graham.
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