This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By Chris
Hi all
I have been struggling with this disease since 2004 and the tremors have now progressed to basically no standing time or a few seconds on a good day. Some times I even find it hard to get up from a chair and get going as the tremors seem to kick in so quickly. At home I can move from chair to stool to chair so I have that covered but outside in the big world it is becoming a whole different story. Some days I find it difficult to even walk a few feet without sitting down. My husband has to follow with my wheel chair or I must know there is somewhere to sit very close by. It is almost like I have to play mind games with myself so I don't panic and reassure myself that I will have somewhere to sit down if necessary. My legs seem to have a mind of their own at times. I am hoping that I will be able to increase my walking time as we have been trying to work on longer walks but some days are definitely better than others. I do participate in Chair Exercises/Yoga three days a week which has really helped build up my core if I could just get a bit more walking ability. Hope to see some of you in Omaha next month. Chris
By MikeS
Hi Everyone
So I havent posted for a long long time and I thought it might be time for an update ,Firstly Im looking forward to catching up with my fellow ' teddy bear' legs friends in a couple of weeks ,
I went to my neuroligist last week ,not the one that diagnosed me back in 2008 as he isnt here anymore he went to Switzerland but a new one who was about 12 yearss old and did not have a clue what OT was he had vaugely heard of it but that was it I told him about all my new bits and bobs that had started going on and he looked at me although I was talking In Martian He couldnt offer me anything didnt want to test me or offer any kind of ......well anything basically I got up and left.
I really hope that the Omaha tests are as good as last time Ive booked my self in for the whole week and am hoping to get some answers re my total loss of smell, a weird spasam that i get in my left hand and the weirdest one that I sometimes shake uncontrolably in my sleep ..that has been compared to a scared dog , you know like when they hear fireworks or a storm .
Ive decided this will be my last trip of this sort I always make a bit of a holiday of it Ill go to Las Vegas first then LA after Omaha but to be honest its a long way from Spain and I have to go via Lndon and Im now finding the travelling a bit too much as I do it on my own and my standing time is now a matter of seconds and Im fed up trying to explain it to the security at airports.
Apart fron that I am remarkably well I havent worked for years but I write a weekly coloum for an English speaking paper in Spain and have my own half hour slot on Talk Radio Europe every other Friday both of them consist of me being grumpy and complaing about stuff but in a light hearted manner.
Thats about it really look forward to seeing you all soon and of course a special big hug to Gloria my inspiration and dear friend
Keep Smiling
Mike :)
By Chris
Hi Mike I am looking forward to seeing you again too and having a nice chat in Omaha. I have definitely noticed quite a significant difference in my tremors and standing time since the last time we were there and travelling is becoming quite tiring and difficult for me too but I am not ready to give it all up yet. See you soon. Chris
By Lorie M
Sorry we can not be in Omaha to see everyone. Would love to hear you with your great sense of humor. We met in Rochester MN at Mayo clinic research meeting.
A few years ago I was having a cough and doctor said it may have been because I was taking an "ace inhibitor". He told me to stop it for several days before he started me on a different BP med. My tremors became very, very noticable. I thought of you when you had a heart problem years ago. How is everything now?
Lorie M
By Betty
Hello from Florida!

I thought I would update you on what is happening as Irma comes ashore here in Florida. It is coming up the west coast and we live on the east coast in Melbourne ~ near Cocoa Beach. We thought it would come up the east coast or the middle of he state, but it moved west and now the whole west coast is in the path.

We have lived in Florida almost all our lives and have never seen a hurricane as large in size as Irma. It covers the WHOLE state. Even though we are on the other coast, we will get hurricane winds, storm surge and rain. Andrew wasn't as large and came ashore in the Miami area, but went south to Homestead and destroyed it.

We have several cases of bottled water, filled the bathtub to use for minor bathing and flushing the toilet, hurricane shutters are closed and locked, canned foods which can be eaten if we lose power, and a small charcoal grill, so we feel we have done all we can to prepare.

The west coast will be hit hard and high water surges are expected. I will update you as I can.

By golfnut
The Golfnut is back for a little update. All is well actually. Medicine free, coping with most things - not letting OT take the lead in my life.
Standing time - 12 seconds perhaps? Not really counted, some times it feels longer, sometimes like 5 sec. But if I lean on something I can stand longer of course. Tummy against counter or zink and a showerstool to sit on - there are ways to cope.

I've posted a longer report in my thread, if anyone wants to know more. Oh - an I'm in Sweden by the way if someone wants to reach out.

Take care everyone,
the nut
By BobSweden
Robert From Sweden here again,

Last sign from me was January 2017, later in february my wife (now 67) got a new session with our local Neurologist. Unlike the first time he really took his time and made a waste couple of different exercises. Good but also really bad !!! My wifes eyes where now wide open for how "bad" she really was !! Strong as she is, I now knew that she had lived in some kind of denial and she was thrown into a looong time of depression. Sorry to post facts like this but I want to show one aspect common when it comes to all severe medical conditions - denial ! Even to walk the dog for a short P is no longer possible. Also for me a heavier workload but so far bearable ! At last my wifes mood is a bit better and the good news is that she has been remitted to a neurologist at SU a universityconnected hospital in Göteborg, Sweden for a second opinion. Our expectations are as you can understand moderate close to positive. Unneccesary to add my wife is a 100% OT+ now !! I will be glad to report a n y t h i n g good !

By lorna
Hi all OT friends, It has been such a very long time since I have made contact to the OT site, mainly because nothing has changed for me in years, I have had OT for well over 20 years. Like so many of you out there I have tried many meds with little success. I have been on Lyrica for about 10 years and only took 75mg for most of that time, even though I could have taken much higher doses, I found that 75 mg was enough just to TAKE THE EDGE OFF. I use a wheelie walker when shopping and cannot do without it now, but that's ok. I employ a house cleaner once a fortnight to do floors and shower etc, which I find impossible to do myself. My husband is very good, doing other chores, especially changing the beds, I could not do this myself unless I crawled around the floor. I love my garden and either sit on a stool or on the ground, I refuse to let OT stop me from enjoying this past time.

About 5 weeks ago I changed my GP and told him about this tremor and he asked me if I had tried Sifrol (Parkinson drug), and told him I am only taking Lyrica. He asked me to try the lowest dose of Sifrol for a month, which I did, still taking Lyrica. I found that my stability with walking was so much better, so I have now increased Sifrol to 0.25mg and now not taking Lyrica. I still have the tremor, but feel more stable than I ever had when walking. I will keep you informed in a couple of months to let you know my progress. Kind regards to all. Lorna from Down Under :wink:
By Betty
Hi Lorna,

So good to hear your news regarding the drug, Sifrol. I have not heard of this one, but I have not seen a neurologist in several years now. I know I have OT Plus, so I just try to deal with it.

I may try to find a good neurologist in my area and check out this drug for Parkinson's; certainly can't hurt. Do keep us posted as to how you progress.

Betty in Florida
By adrianoconnor
Hi Mike. Hope you are well. Just came across your post with reference to travel and how hard it can be. For the last four or five years I have requested/booked wheel chair assistance when flying. I find I get treated like royalty and find it most enjoyable. When you get to the airport you go to the disabled assistance desk and check-in. you sit down and then some one will take you through customs etc. I know it feel strange at first being in a wheel chair when your able to walk. but what people don't know, is that, you cant stand. So next time you book a flight also book wheel chair assistance. There is no cost so take advantage of it.
The reason I came across your post is the fact that, with very little new inputs, I often look through old post and find someone I can help. Hope this helps !
Best wishes from Adrian O'Connor, Ireland
By Nancy Linthicum
Adrian, I totally agree with you about using wheelchair assistance at the airport. I resisted this for several years but now realize I was making my husband's as well as my trip much more difficult and tiring. Especially if you are also renting a car. For an appropriate tip I have had complete assistance from curbside to the gate. I also have realized that I can continue to do most of our shopping at Costco and grocery stores, etc by using their electric courtesy carts, or my rollingchair/walker. I STILL REMAIN TOO SELF- CONCIOUS TO DO THIS SOCIALLY, HOWEVER, AVOIDING CHURCH FUNCTIONS, ETC. UNLESS I KNOW NEARBY SEATS ARE AVAILABLE AND A CANE WILL TEMPORARILY SUFFICE. Vanity still reins at my nearly 80 years of ag.but I suspect I will come to terms with this adjustment also. As we all age and encounter increasing unsteadiness and inabilities to do what we used to do because of both OT and other health and aging problems I realize I can still see, hear. taste, feel and think - be it not as well as when I was untouched by life's realities. KEEP OUR CHINS UP.AND KEEP SEARCHING..we know the alteratives aren't helping.

VAYA CON DIOS from your AZ OTher.
By Theresaann
I was self-conscious at first at using a rollator. Then my mother's words of many years ago rang in my head: "If I use my cane (and eventually a classic walker), others will see me and know there's no shame in using it. I hope seeing me will give others courage." (She was in her late 70s with arthritis.)
By Donna Sauber
Hi, I'm Donna. I have had OT for over 20 years, luckily not severely until I retired from teaching Jr. Hi! I had to go to a few dr'.s before I got a correct diagnosis as so few know OT. The last few years I have had several major surgeries for various issues and the tremors has gotten worse. . . until I started a new drug Fycompa, and began putting in major time at the fittness gym. I work very hard at balance and my posture is horrible from trying to keep on my feet but the gym helps that too. I'm in the Easy Does It classes and work particular machines for leg strength. Still taking carba-dopa leva-dopa and clonazapam 3 X a day but lowering those doses to try to wean off. Isn't it a *B?/*&" to have to take so many drugs? I use those electric carbasket things in the stores that have them, a cane for church, avoid lines at all cost, just like so many of you, and Mike, you are right, it is too difficult to explain what we have to the unknowers! I am nearly 78 and going to France next week. Yeah! My advice - never give in to the disease, keep fighting for stability.
By adrianoconnor
Hi Donna. Sounds like you're doing all the right things. I know how hard it is to try and lead a normal life with OT and other illnesses. But I guess we have to try. I've heard a lot about Fycompa and was wondering if was as good as people say. I'm thinking of giving it a try if my neurologist agrees.
Enough of this. I hope you have a good time in France . My wife and I had two weeks touring around in Brittany in May, in our small camper van .
Best wishes
Adrian O'Connor
By Theresaann
I want to remind everyone that medications can have different names and labels, depending upon in what country you live. Even within the same country, a medication can have different names, depending upon what pharmaceutical company developed/manufactures the medication. Also, be aware of the side effects. Be sure to research the side effects and discuss them with your doctor before taking any new med. Also, be aware that many medications cannot be stopped abruptly. Some medications (and not just antidepressants) may have to be weaned in gradually decreasing dosages in order to be stopped safely. Severe side effects could occur if the weaning is not done correctly. (For example, stopping Gabapentin [Neurontin, FusePaq Fanatrex, Gabarone, Gralise - US labs] abruptly could cause serious seizures.) Your physician should be consulted before you discontinue any medication.
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