New to the forum? post a quick introduction

[gloria]

Lila: You get an A+ in the way you have coped with your OT for the 30 years. I hope all our OT friends will follow your spirit of finding ways to stay active in their lives as you have done. Thanks for your great introduction and look forward to more of your postings. Gloria

PS: Since OT is progressive can you remember how your standing time has lessened from the first time you started with the symptoms to how much standing time you have now? Gloria

[Lila]

Sorry Gloria but I don't have any accurate data to submit. All I know is that my unaided standing time has progressively shortened so that now, even with cane in hand, I immediately look for a place to sit down or lean up against. When off to places unknown that might require standing I take my chair-cane along with me. Fortunately I can still walk at a good pace; it's the slow moving about that gives me trouble.

[gloria]

Lila: You and I are the same having OT for a 30 year range and being in the 80's so our standing time definitely lessens to immediate "a place to sit down or lean up against" just as you described. . Your input is excellent and look forward to reading more from you, All the best , Gloria

[Shorty]

Saw a neurologist yesterday. He felt that I had Two tremors - orthostatic and essential. I really hadn't noticed the ET but he did on the finger to nose movement. Not sure I agree because I make a lot of seed bead bracelets for women in shelters at Christmas and other fine finger tasks without an issue. He said I was the fourth person he has seen with it in over 25 years. My balance is bad probably because I became sedentary as a coping mechanism. Recent fall down stairs etc. Use a cane but the physio I was seeing wants me to use a rollator outdoors as she puts me at a high risk of a fall based on the Bergs Balance Test. This neurologist told me to get rid of the cane as OT patients have "no trouble walking". I am not ready to do this as I am pretty unsteady and need to try and regain lost strength first. Gave me a script for gabapentin but left it pretty much up to me whether to take it or not. Booked nerve conduction studies and mri (am type 2 diabetic) After knowing me for less than half an hour, he discounted everything that the physio (who has worked with neuro patients) and I have seen for a couple months felt. Not sure how I felt when I left his office. I posted recently on your introduction section. I boldly took an OT article to my FD along with copies of readings from the lift pulse app to get the referral to the neurologist. My FD was impressed to see what happens as soon as I stand and made an "urgent" referral which is how I got to see a neuro in a week. Waiting times here in Canada are months. The movement clinic I wanted to be referred to has a two year wait time and all relevant tests must be done before referral. Anyway.... Can I stay?

[admin]

Anyway.... Can I stay?

Absolutely! welcome to the forum

[gloria]

Shorty: It is important that you stay .......... we are here to work together to help understand better OT with questions and information. To get you walking more perhaps your physio's suggestion might be a good idea to get a rollator but get one with a seat so you can walk longer distances and can sit down if needed. You have given a good idea of where you are with OT and we are waiting to hear your continuing OT situation. Gloria

[Shorty]

Thanks Gloria,
I did get a level 3 rollator with a seat but I think I overestimated my current ability to use it. It has 8 inch wheels and really flies down slopes faster than I do. The manual says not to use the brakes when walking. Hoping to work up to using it. Realize I probably should have gotten one with 5 inch wheels with the goal of graduating to one for more active users. Fortunately, there is a local store in Niagara Falls called For the Needy - Not the Greedy that sells second hand donated medical supplies. They repair any donations if needed - even sterilize what can be put in a big floor sterilizer and recycle all equipment. They keep any spare parts that can be salvaged when equipment is not safe to use as donated. Everything sold is in working order. They have scooters, wheelchairs, walkers, rollators, hover lifts, stair lifts, bedpans, syringes, dressings etc. Their warehouse is huge. Volunteers help with staffing and prices are very reasonable. I will check it out for something in the interim. I did find a walker at a motion specialty store with no seat (unfortunately) that will fit into my little sports car (Miata) that folds to a quarter size that others take up, so at least I can still get a little luggage in the trunk. We belong to a Miata Club and do weekend trips etc.

[admin]

Has anyone had any experience with the Veterans Administration and OT? A new member posted the following discussion. If you have any experience or knowledge in this area please click the link below and let him know what you have encountered. Thank you.

OT vs Veterans Administration + Agent Orange

[admin]

Jane has posted an interesting poll for people with OT. To insure that the poll is only taken once, you will need to be logged into the forum to take the poll, but the results are posted anonymously. You can read more about it and participate from the link below:

Link to OT Poll

[joyechizek]

I first noticed the tremor in the mid-1980s, while still in my 30s. I was given Xanax when I had to perform for work giving presentations, trade shows and other situation where I had to stand and speak. It has progressed but not quickly. I worked until 2010 when I found myself sitting on the floor if nothing else was available. After that, I noticed the panic set in when at a buffet, in lines, or especially standing chatting at church, business meetings and the worse my 45th class reunion. In 2011, I was carrying a new computer down my home steps and got shaky and stopped and couldn't move. When I moved I missed a step and fell breaking my leg and ankle with surgery that left 2 plates and 13 screws. While that healed and I relearned to walk, I had no tremors and felt the fall and surgery perhaps cured it. But when I narrated a church play, all the sudden a tremor hit. I held on to the lucite pulpit but was swaying so much I lifted it off the stage, I had to sit, and could not go on. I went to a neurologist and he correctly diagnosed it as POT. He gave me clonazepam, but it created suicidal
ideation. I am also bipolar (I also had a traumatic head injury at 6 that caused dyslexia to set in suddenly), so my psychiatrist had continued to give me the Xanax that works. I often use a couple glasses of wine which helps greatly for the time needed to function socially. I was
hit on the head with a baseball bat at 6 and had a concussion. I have also taken lithium since April 1980 so I do have an essential tremor on
occasion, especially when in heat, crowded stressful conditions or when task-tired such as working with a computer mouse all day. My POT has been well managed and while I have tremors when in crowds, especially when hot and often when people want to stand and talk,
but have managed to avoid most situations or look for a chair, table or wall first thing. I've had this so long, before I know what "it" was, I almost act and maneuver around people automatically seeking "safe" roles and places to sit, I dread this getting worse and live on a lake so swim extensively every day as that form of exercise is unaffected. I was interested in the magnetic therapy clinical study, but the amount of metal in my leg prohibits it. But my business is done remotely on the computer, so I feel fortunate in setting up my life in such a way, that
the tremor doesn't show or take away from life experiences very much as of yet. I will be 65 in less than a month.

[gloria]

Joye: Thank-you for posting your OT history on the Forum and since you are also bipolar perhaps there maybe others who suffer with the same combination of issues and they will be able share their coping skills with you.
All the best, Gloria

[admin]

A new research paper:

Orthostatic tremor: a cerebellar pathology?

“Functional connectivity between the lateral cerebellum and the supplementary motor area was abnormally increased in patients with orthostatic tremor, and correlated positively with tremor severity. After repetitive transcranial stimulation, tremor severity and functional connectivity between the lateral cerebellum and the supplementary motor area were reduced. We provide an explanation for orthostatic tremor pathophysiology, and demonstrate the functional relevance of cerebello-thalamo-cortical connections in tremor related to cerebellar defects.”

This research was in part financed by the OT community through the NORD OT Research grant. Thank you to the researchers for studying this rare disease and to those who participated in the NORD OT fund!

(and thank you to margie1627 for sending me this link)

Orthostatic tremor: a cerebellar pathology?
Cécile Gallea, Traian Popa, Daniel García-Lorenzo, Romain Valabregue, André-Pierre Legrand, Emmanuelle Apartis, Lea Marais, Bertrand Degos, Cecile Hubsch, Sara Fernández-Vidal, Eric Bardinet, Emmanuel Roze, Stéphane Lehéricy, Sabine Meunier, Marie Vidailhet
DOI: http://dx.doi.org/10.1093/brain/aww140 aww140 First published online: 21 June 2016

Link to online article - http://bit.ly/OTbrainresearch

you can also find the PDF of the research paper here - http://bit.ly/OTbrainresearchPDF

[doglover1957]

Hi! I am new to this site, as of yesterday,after twelve years of searching for answers, I finally found a neurologist who could figure out what he believes I have which is OT with myoclonus. I am going to Mayo Clinic with a few months to be tested for sure. I guess there are only two sites in the US that can due motor neuron testing. I have a good outlook, yes it can very debilitating at times and I can't begin to do anything I used do as this has progressed, but there are people who have terminal illness's and people have so many worse illnesses than I. It is frustrating to try and explain to anyone what is going on in your body, and if they find out that I do have Orthostatic Tremors Myoclnus, I will be only one of 30-40 people in the whole world which kinda scares me. My name is Becky and I am 59. I am using a cane and have been on disability for 5 years dues to this condition---I think the hardest part for me is having to use a cane and wheelchair at my age. I know that is being vain, but at 59 I see others jogging, etc. Well, that's about it, I try to stay very positive and just accept that everyone in life has something and if this is what I have been given, then be thankful that it wasn't something alot worse. Have a nice day!

[molly]

could not agree with you more. I find people do not understand so I have given up trying to explain to others that I cannot stand for long or even short periods. My recent trip to Europe required a wheelchair at the airports which was embarrassing well that's how I felt anyway. I think it is important that we understand this condition affects us all in some ways differently. How we respond to the condition differs from person to person.
I am seeing a new neurologist at the end of July. The last one was great but his staff were not.

[gloria]

Hi! Becky and thank you for posting your situation of being recently diagnosed with OT and myoclonus and perhaps someone else on the website might have the same combination and will be able to compare notes. I think it is very wise of you to go to the Mayo Clinic for additional testing......... please keep us posted on the results. You have a good attitude that we all must learn as we go thru life with this ban in our lives. I see you are a dog lover, I'm a cat lover and believe pets help to lighten our days. Look forward to your continuing postings , Gloria