How is everyone?

[kjwill]

I needed a good laugh and all of you supplied it. Your stories are wonderful. I've just recently had my tremors increase while I was taking a new drug Neupro. I have stopped using this and am now experiencing a return of brain function I didn't know I had lost. I had only used this for about a month and hadn't noticed the fuzzy brain that I had when taking Clonazepan, etc. I don't think I will try any more at least for awhile. I was having trouble driving while using these drugs. Couldn't see right or function like normal. My dining room chairs all have wheels so I can wheel myself around to vacuum and do some chores. I have used the electric carts in some stores but find them hard to use in the grocery store. I have a walker or (chair on wheels) to use sometimes. It is helpful to use a treadmill for exercise so I don't have to make a fool of myself on the street. We need to laugh at ourselves as we go through life with our problems.

[gloria]

kiwill: You are right in showing a lighter side to our lives. I take most things as OT challenges that I need to work around to make my days doable. The main problem with OT is it is disabling in a way non-OT people can not get past the vision of us walking OK but than we say " I can not stand still " ........a concept nobody can understand why including ourselves???????????????? I remember a few years ago a friend of mine phoned me and said " Gloria," I saw you in town today walking so well , I guess you were feeling better." ..... (no not really !!!!) Gloria

[shakeylady43]

Oh my, I hear that so much! A friend will come up to me and inform me, "you aren't shaking today". I may have been sitting down for a few minutes enjoying being "normal". It feels that I constantly have to explain this "disease". Then I have some dear friends who will remind me to sit down when I am trying to remain standing and even one dear friend who will slide next to me and say, "lean on me". To the nonbelievers I will stand up and show them what OT is....then they get it!

[gloria]

Mike asked the question " How is everyone ?" and it is a section of the website where we all should return to every so often and give a catch-up of where we are individually living with OT. I've been living with OT for 30 plus years as you have read on my "Experience Page". I have gone thru the different stages from a few minutes of standing to now just seconds. Mentally and physically I found I have had to make many changes in coping with my more limiting everyday. However having said that, I have eased into these changes...... walking remaining the best stablizer and strengthening part of my mobility. I need someone to help with my shopping and my love of gardening is done with a stool. But the one thing that OT does not take away from us is driving a car and behind the wheel I do not think about OT, I feel like a normal person! Well this is my stage in life with OT........let's compare notes and learn from each other how OT progresses with time. Gloria

[Peachy]

Hello from Mississippi! Just wondering if anyone else has trouble with hands and feet tingling. I wake up all during the night with numb hands. They will go numb while using my phone after a few minutes. They will go numb while driving. My feet do the same if I sit very long. I have been experiencing some leg throbbing. Lower back hurts all the time. I am experiencing some vision problems. Sometimes its blurry and sometimes its like I am seeing things stacked on each other,example :headlights on cars. I can see 2 sets of lights.Each set looks like theres 2 but one on top of the other.I also have lots of twitching in my eyes and face. I have ringing in my ears.I have noticed that the tremors are affecting my arms. I can start out writing good but after a few minutes it gets worse. Household chores take me all day and then I am exhausted. I take klonopin 5mg x3 at night. I was prescribed B-12 injections. When I take them I am nauseous for about a week.My tremors have been acting up since last of December. I helped my husband chaperone the youth group to a conference in Gatlinburg. Lots of walking. When we got back, I just can't seem to get going. I am 45 years old.I have a wonderful husband who is very supportive of me and my condition. I also experience numbness in the vaginal area, which is not good when you want to make your husband "happy". Is there anyone else have any of these symptoms with their OT or you think something else is going on?

[gloria]

Peachy: In answer to your question [ Is there anyone else have any of these symptoms with their OT or you think something else is going on?] My answer is yes I do think there is something else going on and I hope you will get additional medical help with your symptoms. Please keep us informed when you do. Gloria

[Francesca]

Hi, I am very new to the forum although I have had OT for several years. I have taken most of the medication but am going to take Clonazapam second time around. I was interested to read Patty's approach to taking Cl.
Just before going out and so I am going to try it. I was also diagnosed by Dr. Peter Bain in London.
Everyone on this site seems very positive. I have recently felt scared of the future but I hope to learn from you the right attitude to have. Thank you all. From Francesca

[gloria]

Francesca: At what age did you first notice the symptoms of OT? Are you suspicious of anything in your history that might have caused the onset? About how long is your standing time before the symptoms of OT begin? Please do not be afraid of your future, here on the Forum you have lots of OT friends that really understand so ask questions .... they are a great source of life with OT. Gloria

[gloria]

At the present I’m looking forward to our 5th OT meeting , this time with the world renowned neurologist Dr.Joseph Jankovic from Baylor College of Medicine, Houston, Texas, USA. I will be going with Beth and Jeff because without them I cannot travel alone. The wonderful thing about a meeting is to be surrounded in the comfort of understanding and knowing OT friends ...... it is a rewarding atmostphere for all.!!! This will be the FIRST time I will taking with me a walker with a seat or just a cane chair...... Jeff thought I should and he is right because of my limited standing time although my walking non-stop types of distance remains the same because walking is the most rewarding thing we can do for our legs. We are all working together although maybe at different stages on how OT has changed our lives. If you have not posted lately it is important you SHARE an update on how you are doing on the FORUM.
Thank-you, Gloria

[MikeS]

Hi Everyone
Well here is a weird one for you. I have woken up today and my tremor has gone ! My legs felt very heavy and I was walking the dog at a much slower pace than normal and then I noticed that when I stopped my legs were not shaking .I do not have a clue why but it has happened before when I had my heart surgery and was on all different meds and oxygen and this week I have had my diabetic meds changed .
I will keep you all informed as the day progresses and if it stays that way I will post a video later.
If any one wants to contact me directly my email is mikesenker@aol.com
Keep Smiling
Mike

[admin]

Great news Mike!

[gloria]

Mike you are a man of "wonders" ........ how are you feeling today, still no tremors I hope ??????Gloria

[gloria]

Hi! Mike: Just wondering if you are still tremor free!!!!!!! I still believe your first experience when you had your heart surgery could have been the oxygen. Are you suspicious of anything else besides the new meds this time ? Have you spoken with your doctor does he have an answer ??? I'm sorry I'm asking so many questions but this is very exciting news. Please post on how things are going. As always, Gloria

[MikeS]

Hi
Well Gloria I am still pretty much tremor free most of the time .The thing is I am not used to standing still its something I havent done for so many years . I went to the supermarket yesterday and actually walked round the store and stoped to get stuff of the shelves Im going to try and get appointmen with my Dr to tell him whats happening and see what he has to say ....Ok so further update since earlier I had to go out again and didnt take wheelchair and after a while I had to sit as the tremor started .So Im pretty much all over the place at the moment .But one thing is for sure there are certain time during the day that I can stand still and not panic ,
Ill keep you all updated
Keep Smiling
Mike

[gloria]

Mike : In two and a half weeks Beth,Jeff and I will be in Houston,Texas for the OT meeting. It will be good to see you again too and if perhaps you do not have a answer for your situation by then you can discuss "what is going on with you" with a good many OT friends and find some possible answers.
Have a good trip and will see you in Houston, Gloria