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Here is an encore post from 2006 with a very long response thread that had thousands of hits. To get to all of this interesting information, click on search and type "earliest" into the subject block leaving the other spots blank...I'm so glad this is still here! For all of our newer members, please add your experiences below. Thanks!!!
Earliest Symptoms... (SunnyKay)
Posted: 8:31:53 pm on 9/28/2006 Modified: 7:32:10 am on 10/25/2006
Hello!
This question is for everyone officially diagnosed with an Ataxia/SCA by a doctor whether or not it's been identified.
Did any of you experience fatigue or weakness as an early symptom? A feeling of tiredness in your upper arms and/or legs that you may have attributed to "pulled muscles" or "overdoing it".
Did anyone first feel weak, tired, or fatigued in their chest, like with your breathing or in your mid back muscles?
Have any of you had an elevated heartrate, tachycardia, either early on or any time during the course of your Ataxia?
How exactly would you describe your earliest symptoms? Difficulty with gait is "classic", but more specifically for example, "I feel like when I want to move my leg to walk, I am going to, but the message never gets to my leg. The thought is in my head, but I can't will my leg to move." That was how my Dad described it to my sister and brother-in-law about two years before he died.
Oh, and as I never printed out all of the wonderful feedback on my handwriting question from the old boards, I'd like to hear about how Ataxia/SCA has affected your handwriting and ability to write. As I recall, one or two people had handwriting difficulties as one of their first symptoms, but most of you had gait, balance, or other issues first.
Thanks alot!
( your friendly ENAF BB family doc!)
SunnyKay 
Everyone Deserves A Great Doc!!!
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My writing skills have gradually deteriorated.
I used to have a very legible hand and I even tried painting at one time. But no more. I can't even draw a stright line now and I print anything I need to wright. If I can type it on the computer I do so and I don't write at all if I can get out of it. I don't even sign my name if I don't have to. reete-c |
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| I began having trouble with my handwriting years ago. I kept thinking that if I could just find a pen that was fat enough or thin enough, if I could decide between medium and fine, I would be OK. I used to write page after page after page as part of my job. I could print so fast that there was no need to write in script. Then, slowly, I couldn't do either. It was slow and I just wrote this off to burn out in my wrist and hand from writing so much over so many years. I'm 58 and I wrote off a lot of stuff to age and thought no more of it. |
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Good question, a lot of responses.
I couldn’t help but notice that many of the responders aren’t active on this board anymore; even the links to their names were nonexistent in some cases.
As to my symptoms;
The handwriting came first, I even had difficulty with my signature, I wrote it off.
I felt like I was going to pitch forward if I ran
Then the balance and difficulty walking straight, and I couldn’t walk heel to toe.
Talking became difficult.
Lightheadedness came next
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Thanks for your answers, and keep them coming everyone!
Knowledge is Power.
Regarding previous posters, I imagine some have found other boards more helpful, some have had their diagnoses change, some are caregivers who have less and less time to come here, some folks are in denial, some people get what they need and leave, and I suspect that a few have passed on...Sad but true, and we honor them by continuing to search for answers and to "Keep on keeping on"...
Blessings...
SunnyKay
Everyone Deserves A Great Doc!!! |
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It's not a perfect world, it's REALITY |
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Sunny Kay,
I was always tired in the am. Started waking every hour to bathroom. About 10 am, at work, I got that second energy and the brain-fog feeling went away. Never made connection that something was wrong and developing, being never anyone else in family had saME, EXEPT THOSE WITH DIABETES, WHICH I DON'T HAVE.
Felt like I was out in a lake and in a rowboat that was rolling along.
Gait, like right foot and brain did not talk to each other...balance issues intefere with my work.
Handwriting...could not take legible notes...Some supplements worked, in that, my penmanship steadied. Am under care of a nutritionist now...medical people have done all they know to do. They can help keep tests current and be instrumental with homecare services..thanks medicare! Slowed my typing to a crqawl...alot of dyslexic motion at computer to correct!
Sleep better...have more control over bladder, although more control would be helpful.
Even if we do not control the ataxia, we seem to be slowing it, as well as improving other organ function..a slow process...diet of whole food, protein, and exercise.
Hope this helps.Ann
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Sunny Kay,
I was always tired in the am. Started waking every hour to bathroom. About 10 am, at work, I got that second energy and the brain-fog feeling went away. Never made connection that something was wrong and developing, being never anyone else in family had saME, EXEPT THOSE WITH DIABETES, WHICH I DON'T HAVE.
Felt like I was out in a lake and in a rowboat that was rolling along.
Gait, like right foot and brain did not talk to each other...balance issues intefere with my work.
Handwriting...could not take legible notes...Some supplements worked, in that, my penmanship steadied. Am under care of a nutritionist now...medical people have done all they know to do. They can help keep tests current and be instrumental with homecare services..thanks medicare! Slowed my typing to a crqawl...alot of dyslexic motion at computer to correct!
Sleep better...have more control over bladder, although more control would be helpful.
Even if we do not control the ataxia, we seem to be slowing it, as well as improving other organ function..a slow process...diet of whole food, protein, and exercise.
Hope this helps.Ann
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Sunny Kay,
I was always tired in the am. Started waking every hour to bathroom. About 10 am, at work, I got that second energy and the brain-fog feeling went away. Never made connection that something was wrong and developing, being never anyone else in family had saME, EXEPT THOSE WITH DIABETES, WHICH I DON'T HAVE.
Felt like I was out in a lake and in a rowboat that was rolling along.
Gait, like right foot and brain did not talk to each other...balance issues intefere with my work.
Handwriting...could not take legible notes...Some supplements worked, in that, my penmanship steadied. Am under care of a nutritionist now...medical people have done all they know to do. They can help keep tests current and be instrumental with homecare services..thanks medicare! Slowed my typing to a crqawl...alot of dyslexic motion at computer to correct!
Sleep better...have more control over bladder, although more control would be helpful.
Even if we do not control the ataxia, we seem to be slowing it, as well as improving other organ function..a slow process...diet of whole food, protein, and exercise.
Hope this helps.Ann
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| I think my first symptoms were stumbling and falling accompanied by increasingly slurred speech and deteriorating handwriting. Also balance problems - Felt like I could fall backwards. More serious falls led to assistance from cane, now dependent on rollator and balance problems increased to the feeling of now falling frontwards too. Presently balance problems have increased to the point that I cannot turn suddenly to walk in another direction without dizziness and being thrown off balance. |
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Thanks Ann & Beachcomber...
All contributions help!
SunnyKay
Everyone Deserves A Great Doc!!! |
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Sunny Kay,
multiple copies...don't know why...
I forgot to add that speech has been effected slowly and progressively..do a lot of tongue exerizes...helps alot..except my hearing impaired friends, who choose not to correct their need.Ann
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Sunny Kay,
multiple copies...don't know why...
I forgot to add that speech has been effected slowly and progressively..do a lot of tongue exerizes...helps alot..except my hearing impaired friends, who choose not to correct their need.Ann
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Sunny Kay, I have a question for you. You know I have great respect for you and your craft, so this isn't a gotcha question. Why do you want to know? The kinds of ataxias that we are concerned with here, are very very rare. We are talking mostly about the chronic progressive kinds.
The symptoms that get mentioned in the responses may happen to anybody for a multitude of reasons. Most people who experience these symptoms will never develop any kind of ataxia. I can understand how physician would want to file these symptoms in the back of his or her professional brain to use as a sort of rearguard diagnostic tool when the pieces don't fit at all. On the other hand, I can easily picture a sort of hypochondriac having one of these symptoms and then jump to the conclusion that they have a progressive ataxia and worry themselves half to death needlessly. Remember that you are much smarter and more objective than most people and will not jump to a conclusion but let the evidence lead you there.
Almost all the people who are going to be reading this board have some sort of ataxia or are pretty convinced that they do, so we aren't going to disturb the balance of the universe by what is written on this board.
realistically optimistic
ATILLA 
Mrs. ATILLA still loves me |
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Atilla,
Never occurred to me to ask why she should want info.
Was not apart of original thread back in 2006ish...
Just occurred to me that it might be helpful to chronocal how it all seemed to step thru' for me...knowinf every person is different.
I went to N. today and got her take on one of the reports from Athena....it went something like this ...you have ataxia for some reason, but no proof how I got it, just live to improve today and do not live for the unknown..specially where kids are involvled...tell the parents what they need to know and let them decide the road map from there...she does answer questions...at least I finally found someone who knows how to come in out of the rain and seems to be trust worthy about other "things".
I finally found farms or ranches that only grass-feed all their farmstock to sale and keep down on the farm...this will improve the protein part of my diet...now just have to figure out how to stop the hungaries when near a fast food and hungrey!Ann
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Atilla,
Never occurred to me to ask why she should want info.
Was not apart of original thread back in 2006ish...
Just occurred to me that it might be helpful to chronocal how it all seemed to step thru' for me...knowinf every person is different.
I went to N. today and got her take on one of the reports from Athena....it went something like this ...you have ataxia for some reason, but no proof how I got it, just live to improve today and do not live for the unknown..specially where kids are involvled...tell the parents what they need to know and let them decide the road map from there...she does answer questions...at least I finally found someone who knows how to come in out of the rain and seems to be trust worthy about other "things".
I finally found farms or ranches that only grass-feed all their farmstock to sale and keep down on the farm...this will improve the protein part of my diet...now just have to figure out how to stop the hungaries when near a fast food and hungrey!Ann
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How about just plain curiosity?
There's the scientific part of me that is trying to make sense out of a complex puzzle. I have always believed that listening to the patient can lead to great insight, ideas, and perhaps discoveries and ultimately answers and treatments...
There is the family member part of me that wants to find out exactly what my Dad had. I believe it was an extremely rare form of hereditary Ataxia that is not yet identified. I don't want to sit back and wait. I want to learn everything I can while I can. I also want to have a certain comfort level with the future of my son, nieces, nephews, and other descendents on Dad's side.
My intention is to gather data, Not to scare, confuse, agitate, or depress people. My sister and I decided a long time ago that we want knowledge...We want to know. If we could be tested for what Dad had, we would be. Knowledge is power. That's one of our favorite mottos.
You know I'm here both to help others with my medical knowledge and with my experience with my father...But I am also here for support and understanding and to help me find the answers that I need...Make sense?
SunnyKay
Everyone Deserves A Great Doc!!! |
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SunnyKay,
Concur...hope emails help sort the pieces.Ann
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Sunny kay'
Concur...sounds good and right to me. Hope all the emails are helpful.Ann
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Sunny kay'
Concur...sounds good and right to me. Hope all the emails are helpful.Ann
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