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

franann50
Posts: 19
Joined: Thu Jul 12, 2007 10:28 am
Location: Brockton, MA

Re: How is everyone?

Post by franann50 »

Gloria, my thoughts and Prayers are with you.
I am a 2 time Breast Cancer Survivor. you can get through it. I am not making light of it, but just keep your positive attitude and you will make it!!
I also had a scare this summer -I thought oh! no! not again, but it turned out to be scar tissue.Thank goodness.
Good luck,
Fran in MA
Joan
Posts: 32
Joined: Mon Mar 31, 2008 6:19 pm
Location: Vancouver B.C. Canada

Re: How is everyone?

Post by Joan »

Hi aussiepommy,
I've been thinking about you for several days now and wanting to respond to you. I don't have problems with my hips and wonder if that is related to the pregnancy or did you have it before? Is it sore or aching or what?
I hear you that you can only stand for a few seconds and then you have to sit. since I read your post I realized how far I've come with accepting this OT. I remember wedging myself into a corner to cook and freaking out if I had to move to let someone in the cupboard ( nowhere to go ). My attitude has changed. I have it. what can I do about it? The hardest part was getting over the self conciousness about it. Now I am grateful it's not MS or Parkinsons.
So... I have a stool in the kitchen I sit on for peeling veggies and preparing food. I also have a computer chair that I wheel around in ( perfect for taking things out of the oven ).
I have a folding stool that I take everywhere. We walk everyday and the stool tucks under my arm. If someone wants to visit I open the stool and sit down. I'm way more comfy than the other people standing and I tell them I have a balance problem. I take it to the store and sit in line, sit to shop, it hooks over my shopping cart. People don't even notice me, I find everyone is more involved with themselves.
Having a baby is a lot of work in itself, thank goodness it's not your first so you are more relaxed about it. Let your kids help all they can. We know so many children that have had to do chores when they were kids and we found that it gave them much better coping skills for life. It's really a gift you are giving them.
I think a lot of it is learning to give up control and rely on others. People ( including your family ) are more than willing to help and feel good about doing it, it's just that we can be too proud to ask.
You ask about exercise. Do what you can. Sit on a chair and lift light weights. Stretch. And when the baby comes, walk. You can do it, just differently.
I agree with Mike, there must be some help you can get from the Government. I know when my daughter had her babies I moved in and did everything and just let her enjoy her babies. Is your husband allowed maternity leave? Can the family help ?
Anyway I rambled but I wanted to answer you and tell you there is hope and quality of life is as good as your attitude. This is a lucky baby!!
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Hi Aussiepommy, I too suffer with hip problems which I think is related to the OT, the pain is particulary bad when I try and do housework etc hence I do it as fast as I can, and I have to sit lots in between each chore. In my experience I find an inner strength comes from somewhere and I am sure you will also find it when you have your new baby, a clean home is, I know, a pleasure but to have healthy happy children is something to be proud of and many people who cannot have children would give their right arm to have what you have. So as everyone on here says keep smiling and be happy it helps so much.

Take care, Patty

ps. does your name mean you are part British?
irish4411
Posts: 22
Joined: Wed Jul 30, 2008 10:46 am
Location: Cape May, NJ
Contact:

Re: How is everyone?

Post by irish4411 »

It's been awhile since I posted. Just bought a house and have been getting settled.
Here is the issue.
Got into a pretty serious car accident. Was sitting at a stop sign and got hit by a car coming from my left. My car (a chevy Tahoe) was totaled. Front end comletely destroyed. Now, my right knee is swollen and has thrown me completely off balance, like I needed that.!!!!!!!!!!!!!The emergency room doctor sent me home with a kneeimmobilizer and cruthches, only you can imagine what a fiasco that is. I told him about my condition but I swear it fell on deaf ears. I'm left to deal with it the best way I can but now the imbalance has set of a new problem with my sciatic nerve. Seems like it has aggravated my OT and now I guess I'm worried that it will shorted the good time I have left.
Any ideas on how to deal with this????

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

Re: How is everyone?

Post by gloria »

Hi! everyone:
My, my things have been quiet on our favorite communicating spot. I like to call it Mikes' Column. Here in New Jersey, we are busy thinking about holiday shopping which I no longer do since it is not my favorite sport. I'm going for physical therapy prescribed by a new neurologist to strengthen my leg muscles and hips. I have arthritic knees and the whole idea is if I strengthen the muscles it might help the knees especially if I need knee replacements in the future. Has anyone had knee replacements? I'm hoping I can avoid it if possible. Of interest to our bicycling friends, I have purchased a stationery bicycle at the suggestion of my therapist and put it in my den so I can watch TV during my workout. I can not use a bicycle outdoors because my neighborhood terrain is much too hilly. Our weather has not been very good so I miss my outdoor walking too. Soooooo, how is everyone? Gloria
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: How is everyone?

Post by jolarson »

It has been a while since I posted and thought I would update. I wote a few months ago that UCLA doctors put me on Gabapentin along with the Clonazepam that I take in small doses every day. The Gabapentin had terrible side effects for me and I quickly had to stop. Then 2 weeks ago I went again to UCLA and they decided I should try Topomax. I was ok for about 2 days, then on the 3rd day I felt slightly down and uncomfortable. On the 4th day I was writing thank you notes, emails etc. and I simply could not spell elementary words like soon, good, come, some. I had to stop what I was doing and let it sit. The next day I started over and the same thing happened and I thought I was losing it! I had kept my information from the pharmacy about side effects of this drug and sure enough language, memory problems were on the list. Since I stopped the drug immediately I have been fine and not entering dementia!!!! So I am just using the Clonazepam in small doses and although it doesn't help with the shaky legs it does take the edge off the anxiety. So I am wondering if anyone has tried Topomax and had the same results. The doctors told me the side effect would be losing weight aand appetite but that was not the case for me.

But I do want to wish everyone a Happy Holiday. I know it is hard for us to do shopping, at least for me it is. I have to go where there are carts to lean on but I have found checks and gift cards are much easier. This stuff we go through is something I fight every day but I still have so much to be grateful for. And Gloria is one, the person who gave us all this site for which I am so thankful to read and know others are going through the same travails. Everyone enjoy the holidays and lets keep connecting in 2009.
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: How is everyone?

Post by Marianne »

Hello and Happy Holidays to all! I'm happy to report that I have stopped trying medications recommended to me by my neurologist. In the years he's been treating me, I can probably write out a laundry list of every drug ever described on this forum. I'm just taking 4mg Clonazepam daily, which as jolarson says doesn't do anything to control the tremors but sort of takes the edge off. My tremors are status quo for the moment (hopefully they cannot get much worse than what they are). Like Gloria, I have just purchased a recumbant bicycle for indoor exercise. Hopefully it will keep my legs from atrophying and help my arthritic knee (which may need replacement).

Stay well and keep smiling :)
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

I saw Dr. Matsumoto recently as a patient in Rochester. (He was the person who spoke to us OT people last spring at our meeting in Rochester) He said hello to everyone and said he very much enjoyed meeting everyone. He said he learned much from listening to us. Dr did another EMG and noticed that when I was lying on the gurney at rest there were no tremors noted. When isometric exercises were done the tremors were evident. He asked me to return for further testing since he has not had a patient with tremors while lying down. (Of course he said he needed to get some money so I would not have to pay for the testing.) He was excited and said he may be able to tell where the tremors originate with more testing. Has anyone else had tremors while lying down with isometric exercises? He also mentioned another medicine called primidone that may help. I declined the offer since I have not had good experiences with any previous medications. I do take lorazapam daily that does take the edge off.
Merry Christmas to all and I hope it is not as cold wherever you are since it is -9F here and going down.
Lorie M
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Just wanted to wish you all a very happy Christmas and a New Year of positive improvement for our OT.

One good thing has come out of this condition we have and that is the communication between us all, so thanks once again to Gloria for setting up this site without her I would still be thinking it was all in my mind, we just need a genious now to find a cure or a remedy to help without the horrible side effects.

Take care all and enjoy the festive season.

Patty x
Betty
Posts: 391
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 written anything on the forum; however, I check it daily to see what others are experiencing.

This is for jolarson! I am one of those people who is very sensitive to almost all medications. I have tried a laundry list suggested, but have been unable to tolerate anything except Klonopin (Clonazepam). I take a minimal amount; 2mg in a.m. and 2mg. in p.m. but my tremors continue to worsen.

You mentioned your doctor wanted you to try Tomamax, and you experienced memory problems. I was also given Topamax in 2003 and after a couple of days experienced severe loss of appetite (almost anorexia), and depression! I was not told of any side effects and did not ask because I wanted to try with no preconceived ideas of what I might experience.

It did cause me to be confused and my thinking processes were not normal. I also experienced more fatigue, dizziness, more problems walking, pain in back,hips and finally my whole body. I also experienced very dry mouth; but the main problems were the anorexia and depression. When I realized what was happening (after seven days), I called the doctors' office to report what was happening and asked if I should stop taking Topamax. No one called, so because I was so confused, I continued taking Topamax for another week until I was to see the doctor.

I must tell you, because my thought processes were so compromised, I didn't press the doctor for an answer (which is what I would have done under normal circumstances). By the time I saw the doctor, I had lost 14 pounds and was quite depressed. When the nurse came into the room to take notes, B/P, etc, I questioned her about my call and if there were any notes from the doctor. She said the doctor had written on my file I should STOP taking Topamax immediately ~ NO ONE EVER CALLED ME; so I continued taking the medication another week.

I told her how angry I was because no one from the office had called to tell me to stop taking the medication. She quickly got up and left the room. When the doctor came in, he said, "I understand you are a bit upset with me." I told him that didn't even begin to cover how I felt. I had to continue taking it for another couple of weeks, backing off slowly. It took approximately four months for it to totally get out of my system and for me to regain my appetite and weight. The depression also disappeared.

I realize I have written way too much, but I think it is very important for all of us to question what side effects we might experience when trying a new medication. I have decided I will stick with the Clonazepam. It does very little for my tremors or anxiety, but it is better than nothing.

As you said jolarson, we have much for which we should be thankful; things could be worse.

I also want to wish everyone a very Merry Christmas or Happy Holiday Season and a Happy and Healthy New Year.

Betty 8)
stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

Re: How is everyone?

Post by stella R »

HELLO EVERYONE
WOULD LIKE TO WISH ALL OUT FRIENDS OUT THERE A VERY MERRY CHRISTMAS
AND A PEACEFUL 2009

WE WILL KEEP ON ENCOURAGEING EACH OTHER AND HELP EACH OTHER
IN ANY WAY WE CAN
BEST WISHES TO ALL
STELLA
gardenwoman
Posts: 20
Joined: Fri Jan 27, 2006 12:04 pm
Location: Cheshire, UK

Re: How is everyone?

Post by gardenwoman »

Hello everyone, This is about something that helps but I am posting it here because these seem to be the most read posts and the message needs to be read quickly . There is a 4 wheeled shop-a-seat for sale on eBay uk that is currently only 99p, It ends at 10.45am on Sunday 28th. I have got one myself from ebay (cost more that that, but still a bargain since they can be up to £100 new). I am finding it very useful to help me get out and about without the panic of looking for a seat. Just thought that there might be someone in the uk that would find this helpful, I have no involvement in the sale myself. You can view shop-a-seat at the company website.
I am not getting any better with the OT but I suppose acknowledging the problem more which means that I do accept help and use whatever helps me to manage, so this means I can get out more. This acceptance is a long time coming.
delwebb
Posts: 1
Joined: Thu Dec 11, 2008 9:35 pm

Re: How is everyone?

Post by delwebb »

Hello everyone! I am a new member to the Ortostatic Community Forum. Was recently diagnosed with orthostatic myoclonus. Prescribed clonazapam. Physical therapy at home. Initially was using wheelchair, but now am able to use wheelchair only when going shopping. Using the walker outside and cane inside the house. What treatments have been sucessful? Doe anyone utilize aqua therapy or hydrotherapy? What is a good jacuzzi for optimal results? If anyone has this condition I would reccomend the doctors at Mayo Clinic. They are superb and very professional and knowledgeable. The delivery of care I am very pleased with also. JS :shock: :shock:
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi So how is everyone....this post has come to a halt .....Why?
So its been a while hasnt it ? I got a gentle reminder from the boss( Gloria )the other day that I hadnt posted for some time.This got me thinking which is never a good thing .Why havent I posted ? Well I guess its because its hard to accept whats going on with my teddy bear legs.As most of you know I was only diagnosed last year and like everyone I started off with this positive attitude that this darn ( I wont cuss ) condition wont beat me and to a certain extent it hasnt ,but i have to say I am struggling as it seems to be progressing at a rate of knots.I can now only stand for a few seconds.It takes me at least 1 and half hours to get ready to go out in the morning I have just decided to go back to work and meeting and greeting people is a nightmare because the first thing you do is stand up and shake hands or if you are coming in to a room stop and shake hands ....and thats it I then imediatley try and explain I need a chair NOW but that takes precious seconds.When I go shoping to stores I have accepted that I must use my wheelchair which I push then sit in when I want to browse.
So what else, I had to have my dog put down and I miss our walks even though he stopped at every lampost...... I miss him just being around 12yrs is a long time.The ironical thing is his legs went and he couldnt walk.
Now I am realising why I havent posted .Who wants to read all this....You are all in the same position...sitting down.. :lol:
I am not taking any medication and this deep brain thingy certainly isnt for me thats for sure.Bored yet?
Publicity is hard to get even though I was sure my contacts would help and I have asked people that I know to try and raise some money for NORD.
Its taking me some time to write this I keep leaving it and coming back to it I am trying to think of how OT is really affecting me. I have never been the best time keeper in the world but now everybody knows I am going to be lateI have become more impatient than I was, Im snappy especially if I am ready to go somewhere and those around me are still chatting I just get up and go.I put off doing so many things that I should if I know there is going to be a line to stand in ...I walked in the bank the other day looked around and walked out again.I now just go into my old haunts and just plonk my self down in the nearest chair and wait for people to came and talk to me.Dont get me wrong I am not feeling sorry for myself I am just so angry all the time. Is it only me ?
My general health is still same dodgy heart, kidneys working at 47% enlarged liver,hieatus hernia border line diabetic and an ingrown toenail...thank God this isnt a dating site...some catch eh?
So is there any good news.....let me think ......errr no cant think of any...except I still have my sense of humour ..just about...
Well Im sure this was worth waiting for...lol
Keep smiling
Mike
:D
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: How is everyone?

Post by Marianne »

Hi Mike: Yes, you have been silent for a while, but I'm happy to see a posting from you. I quite understand your emotions. Angry is a very appropriate emotion as it is the same description I would give to what I am feeeling. I was diagnosed in 1996; however, what you are feeling right now is how my legs are responding right now. Last April, I felt the condition had worsened to a point where I could not really do my job productively. I was not ready to retire, but as you know, the best laid plans never work out. Here in the States we have what is known as Social Security which we, as we work, contribute to. When retirement age comes around (62 is the minimum age you can collect benefits) you can file. If you become disabled and can no longer productivly hold down your job, you can also apply (at any age). To make a long story short, I applied for and was awarded Social Security disability benefits. I did this by myself, without the assistance of attorneys (who would have cost me at least $5,000). It took about 6 months of paperwork, seeing the Government's doctors, but in the end, I was awarded disability based on all of my personal physician's documentation and the determination of the government's doctors.

However, now that I am "free" and do not have to worry about going to work each morning, I am feeling angry that all that my husband and I planned to do at retirement has made a 360 degree turn. We had planned to make one more trip to Italy, but traveling to Europe requires that you walk. So that trip has gone by the wayside. Yes, I can walk about the house (short walks, then sit), but if I have to go out and it means "walking around", I need to have my scooter. Many retail stores have begun to have these scooters in their stores; however, some do not. My scooter is always with me just in case. To make things worse, I'm probably going to need left knee replacement at some point. Angry is what I'm feeling right now because this dreaded OT has turned our lives around. I do not dwell on it, otherwise it will really depress me, humor is what gets me through. The winter here in NJ has been cold; we just had about 3-4 inches of snow yesterday. Hoping that warmer weather will soon be upon us. Well enough of my rantings.
Condolences on the loss of your dog. I too lost the youngest of my two Shih-Tsu's. She was only 9 and it was very hard for me. The older is still going strong.

Stay well, keep smiling and always maintain your humor. :)

Kaylie
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