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

Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

I have been reading about voice change. I do not have that but I do notice if I am shopping and stop for a break and eat something that it may get difficult to chew and swallow. It is as if my tongue is tired! I do not choke on the food but need to take more time to chew and swallow. Has anyone noticed that happening to them?? Of course I do not stop eating! Heavens it would be so unlike me to lose weight!
Lorie M
DaveW

Post by DaveW »

Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:49 am, edited 1 time in total.
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 »

Hi Lorie
I to have diffuculty swallowing.
It takes me a long time to eat
Stella
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Stella,
What do you think that is, with the swallowing thing? I have been paying more attention to the situation. Swallowing is not as much of a problem as chewing when I am tired. My muscles/jaw seem to be just as tired as my legs and the rest of my body after I get tired from activities. Perhaps I will mention it to the doctor next time I see him. Give him something else to look at me with that weird look. Take care.
lorie M
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: How is everyone?

Post by Lake of the Woods »

Hi Stella and Lori,
If you are on any kind of drug that is a sedative type or muscle relaxer I suspect that might be a factor.
Peggy
kate
Posts: 23
Joined: Sat Apr 17, 2010 10:10 pm
Location: Kansas, USA

Re: How is everyone?

Post by kate »

Hi,
I have this too. I feel like my jaw and tongue get worn out easily. It is the same ache I get in my legs and arms if that makes any sense. I told my doctor at my last visit. He made a note of it but didn't explain it....probably because there is no explanation. I notice it more when I am eating a meal then a snack or something small. I do sometimes have trouble swallowing and I don't like that feeling at all. I am like you, it doesn't stop me from eating!
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: How is everyone?

Post by jolarson »

Dave, wish I had a doctor like your Dr. Bain. Mine is like Lorie said, they just give me a weird look when I mentioned something else happening................
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Good morning all,

Dave, I read with interest your experience with Dr. Bain; and as was said by Jo, I wish we had a doctor like Dr. Bain here in the U.S.

I do have severe tremors and also have ET. My penmanship is almost illegable at this point, even for me. I have noticed I am now 'clumsy' and have NEVER been clumsy in my life. I reach for something and often knock things over.

At times, I find my voice is weak, but I don't 'hear' any tremor. It could be I just don't hear it. I also have problems from time to time swallowing. I think everything is worse at the end of the day; especially if I have been out and busy. I tire VERY easily, seem to have very little energy or stamina now and wonder if anyone else experiences these things.

My gait has changed and is becoming very obvious I have a problem. I was able to conceal this until this past year. I do find, at times, I am leaning forward when walking instead of standing upright. As I mentioned above, this usually happens towards the end of the day when I am tired.

I would be interested in hearing if anyone else experiences these things.

Betty
Last edited by Betty on Sat Sep 17, 2011 4:34 pm, edited 1 time in total.
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 Betty
I too have ET (mainly affecting the head) along with the OT. Tiredness is my enemy and as it has been getting progressively worse this year to the point that I am too tired to take a daily walk after a day at work. I've made the decision to cut back my hours in the office to about ten per week (with the occasional extra hours when extra cover is needed). I decided that it was far better for me to have a daily walk (approximately 50 minutes), and as I am not the breadwinner in our household, it was easy for me to reduce the hours - also helps that my husband is also my boss (in the office, that is!) I too have clumsy moments and I have to remember to concentrate when walking when I feel my gait becoming clumsy. I have put this down to the tiredness, so am hoping it will improve over the next month as my office hours are reduced. Have not noticed any swallowing problems, but I have suffered from a husky voice on and off for the last three years. It has been put down to blood pressure medication, but each time the medication is changed, the huskiness settles for a few months, then comes back. It is more noticeable when I am tired.
Regards, Lynette
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Dear Betty:

We have been friends for a long time and all the things that you have written about can happen as time goes by in our lives, and some even for people who do not have OT. However, our life with OT is already an abnormally stressful, exhausting one thus dealing with new experiences and where they fit is more difficult.

If you have ET with your OT your penmanship is most certainly challenged but it is not uncommon for OT people to have both ET and OT. I personally have light hand tremors not as bad as those with ET and have had them for 30 years.

Also many with OT find changes in our already challenged balance and posture and this is part of the progression of OT. I personally find I must not turn or move too quickly because it throws me off balance. Yes, most of us do have gait changes, this is all part of our balance and posture problems.

I don’t know if difficulty swallowing and voice tremors are those of the OT syndrome. Reports show that up to 14% of people over 65 are effected by ET, a much greater number than those with OT, and this can add more symptoms to our problems including voice tremors. Are they OT or ET?

There are studies that link Parkinson's to ET, ET to Dystonia, Dystonia to infections etc. and an equal number of reports that contest any relationship between the diseases or causation. Here's a paragraph from Northwestern University that clearly states how confusing all of this is and how little we really know:

"Despite the high prevalence of tremor, knowledge of its pathophysiology and anatomic generators is limited. Central versus peripheral nervous system origin of tremor is debated. It remains unclear if tremor generators are disease- specific or if there is a common final pathway independent of tremor etiology."

I have very busy days and try to be as active as my OT allows me however by 4 pm I’m so exhausted. I feel the need to kick off my shoes because my feet no longer want to be in them, nor do they want me to stand on them, not even for the seconds my OT allows! This is the end of my normal day followed by a very early bedtime.


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

Re: How is everyone?

Post by Betty »

Hello Lynette,

I have not been on the forum for a while and when I checked in today, I found several notes to answer; so I will start with you.

My ET doesn't affect my head, just my hands. I think being tired, for whatever reason, makes our tremors worse. I find I must sit and rest several times during the day and 'calm' my tremors.

It's good you are walking; I am having great difficult walking at this point....especially when I am fatigued. But..if you are able to walk for 50 minutes on a daily basis, that's wonderful. Keep up the good work!

You are fortunate it isn't necessary for you to work and can reduce your hours when needed.

You mentioned you have a 'husky voice', have you been checked for GERD? That may be the cause for your husky voice. I have that, and a husky voice as well. There are meds to help; you might inquire about this from your physician.

Good luck and keep walking!

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

Re: How is everyone?

Post by Betty »

Hello Dave,

I think you wrote once before and your email got lost in my mailbox; sorry!

So, you lived and worked in Melbourne, FL working at Harris; that is still a very good company. How long were you here, and when did you move or return to England? Are you British; or just decided to live there?

Now back to the business at hand. You said you are reading a book by Dr. Bain; "Essential Tremor: The Facts". Would that be available in the U.S.? I would think anything he writes would be of interest to all of us. If he does write one on Orthostatic Tremors, please let us know.

My throat isn't that much of a problem for me; just changes in my voice, but nothing like you wrote.

I wonder if as our tremors worsen, being clumsy is one of the things we notice. I, too, must be very careful in the kitchen. I have very few 'glasses' in the kitchen; most are plastic at this point.
I don't have a problem eating or feeding myself; so that is a plus!

You wrote:

"I found that as my standing time got extremely short the balance went due to sway and the gait went with it. I am always conscious that I have a tendency to over balance backwards and for this reason I lean forward causing the back pain that plagues me a lot."

Perhaps trying to keep our balance, we tend to lean forward; I know I do as the day goes on and if I have tried to do too much and very tired. I try to remember to stand up straight, not to lean too far backwards (that could be a disaster for me), yet also remember NOT to lean forward too much. Lots of things to think about just trying to stand and walk, and things we took for granted before OT.

I will most certainly check your link after I have finished answering notes here. It does sound interesting; thanks!

It's nice to hear from you too, Dave; stay in touch and I will do the same.

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

Re: How is everyone?

Post by Betty »

Dear Gloria,

Yes! We have been friends for many years and you are the very FIRST person I met and was able to see and talk to about OT. Our friendhship is one I cherish and I am so thankful to have found you and your website. You are a constant 'guiding light' to all who have found this site.

I understand things about which I have written can happen as one gets older, but with OT, it is just a bit more difficult to function.

Regarding my ET; it started slowly and has progressed to the point I mentioned previously ~ my penmanship is often difficult to read even for me at times. It is more difficult when I am fatigued; but I think that happens with all of us.

You mentioned how challenged we are regarding our balance and posture. I do realize it is part of the progression of OT, but as you know, I also have severe vertigo ~ so I have to be even more cautious when moving about. I know I must be VERY careful when turning, looking up or down and leaning over is not an option.

I have had this since I was a child, so I have learned through the years to cope with it and do know the difference between the two. Of course, it makes my balancing act just a bit more of a challenge; but I am coping! I also realize having both vertigo and OT affects my gait; perhaps more than others.

I feel my voice problems are more related to GERD, but perhaps some are related to OT. It is not something that concerns me. I just sound like 'Gravel Girty'! Many reading this may not have any idea to whom I am referring, but I feel you do. LOL

I know you are one busy lady, and try to read all things written on your wonderful site, and answer when you can. I loved what you wrote:

..."however by 4 pm I’m so exhausted. I feel the need to kick off my shoes because my feet no longer want to be in them, nor do they want me to stand on them, not even for the seconds my OT allows! This is the end of my normal day followed by a very early bedtime."

I think we can all relate to that; I know I can.

Thank you Gloria for all you have done for so many people, and thank you for the friendship we share. It is very precious to me.

Love,
Betty
kate
Posts: 23
Joined: Sat Apr 17, 2010 10:10 pm
Location: Kansas, USA

Re: How is everyone?

Post by kate »

Hey Dave,
You mentioned in the book you are reading that people don't realize they have a tremor problem. I have to say that I spent almost four years going to doctors for my "balance problem". I had many diagnosis...inner ear issue, migraine associated vertigo, mal de debarquement, ataxia and thats only a sampling. I will also say that these were all top doctors that I saw. I will have to check that book out myself. Does it talk at all about OT?

Kate
DaveW

Post by DaveW »

Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:53 am, edited 1 time in total.
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