Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Hi!
 

Hi Darlene,
I've only been diagnosed with SCA but have decided to take each day as it comes. I don't know how else to handle it.

I've noticed lately that I am getting a little more dizzy. I wonder if that goes with fatigue? I've had real bad fatigue for a month or two. I wonder if fatigue goes along with SCA? My legs are getting a little more unstable & I've noticed (this is going to sound silly) my fingers dropping when I don't want them too.

Let me explain that. I'm at the computer quite a lot & when I'm typing I notice my fingers just falling & hittting keys before they're supposed to. I guess this is another thing to tell the neuro next month.

Well, I better hit the hay. I'm really tired & morning comes wayyyyyyy to early anymore. It's been nice meeting you & I'm glad there's more than myself with this!

Nite!
Deb

Hi Marie, :D
Welcome to the club! I was just diagnosed 4 years ago. I have no idea of what to expect from this. None at all. So, I'm just taking things day by day.

I have a few questions to ask my neurologist when I see him this month. Does 'finger drop' go along with this? That sounds like a stupid term but it's one I made up and describes the problem. I'll be typing on the computer and all of a sudden a finger drops. This happens quite frequently and I usually hit the wrong key. Very aggravating!!

I want to also ask if fatigue goes along with this. I've had to lay down in the afternoon (almost every afternoon) but these past few months have been terrible!

I do know that cognitive issues go with this. So do urinary and bowel issues.

Well, I can't talk long today. I'm very tired and I also have to start writing a chapter for a book I'm writing. I find hobbies and other things to do help. It helps you keep your mind off yourself.

It was great meeting you and it's fantastic that there are a few of us with CSA that can talk to each other here! Welcome to our little group! :grouphug:
Deb :D

Hi all,
Some of the things to be expected with ataxia (based on ataxia type and severeness):
Loss of balance, loss of appetite causing extreme weight loss, loss of muscle strength, loss of flexibility, degradation of eyesight, heightened emotions, personality change, slurred speech, dizziness, clumsiness, cramps (often severe), loss of gait, all food is now a choking hazard (many sufferers swallow into the wrong tube filling the lungs often causing pneumonia which is often the cause of death), alcohol and tobacco make many ataxia symptoms worse, walking gets worse sending sufferers to cane, then walker, wheel chair, scooter, etc...
Things in everyday life that are affected by ataxia: I can no longer jog, run or walk without holding on to something (treadmill !), I no longer drive, walking in winter is sooo hard (ice is a drag), no more sports or activities exercising, getting dressed is getting harder, no booze or drugs or cigs, no more work/job/money, anything requiring finesse, dexterity, coordination, timing, balance, strength and flexibility is hard or impossible. The list is long, ataxia is progressive, meaning most symptoms intensify. Washing/drying dishes has left me with considerably less glasses and plates.
There really is no + side to ataxia. But... even with no cure or treatments, us ataxia patients experience less physical pain then many of the members of this site. Ataxia isn't a devastatingly quick disease (I was diagnosed with SCA-2 in 2002 and am still walking unaided, barely). Working with heights scares me even though I never have had a fear of heights, but I know I'd fall off a ladder, roof, tower....many ataxia victims have died from a fall and head bump.
I have discovered a few things that assist me daily. I'll post that later-on, I need a break from typing.

Hi everyone,
Right now I'm very tired so this is going to be short.

I'm feeling disgusted with myself right now. :mad: I was at the neurologist's office today and forgot to ask if fatigue, "finger drop" (as I call it) and cognitive issues come along with this. My eyes are very tired now and couldn't read all the information Moonspell had. I'll get to it.

I usually write my questions along with what's been happening down for the doctor. I forgot to today and could kick myself! But I want to know.
Deb :confused:

Finger drop? This seems not to be a symptom shared by all ataxia patients. Personally I don't experience finger drop, but often when using my hands for typing, handwriting, using my iPod, dialing a phone, etc., I have the equivalent of a finger drop: fingers and arms often just get mobile at their whimsy and I misdial or sign my name illegibly. Frustrating! On my keyboard, the 'backspace' key is easily the most used.
Fatigue is absolutely a very common symptom. Which makes sleep very important- if I sleep less than 6.5 hours, ALL symptoms get worse. I aim for 7.5-9 hours of sleep per night. I usually get 7-8 hours.
For me, the most important tactics I have used to slow ataxia are(in no order):
- sleep enough
- quit drinking and smoking
- get and stay in the best physical shape your current situation allows (treadmill, swimming, light weights, crunches, push-ups...)
- develop and keep a strong, positive mental attitude. Not doing so seems to allow for depression to take route; and ataxia is bad enough, there is no need to fight through depression as well
- eat and supplement healthy foods and natural herbs, vitamins....etc. When grocery shopping, I no longer buy processed "food", but I garden and I have friends that hunt big game, so I am a very healthy man, excluding ataxia. I haven't even had a cold or sniffle in 10 years.
- I don't now, nor never have, used pharmaceutical crap. For me, natural medicine works best and causes only very minor side-reactions. I don't even use aspirin, tylenol, Rolaids (or any anti-heartburn meds).
- for the last 10 months I have started making, preparing and eating fermented foods, such as: sauerkraut, kefir, kombucha, many lacto-bacillac fermented, jarred foods like carrots. This stuff does nothing to combat ataxia symptoms, but fermented foods contribute to over-all health. They say healing begins in the gut, so all the probiotics in fermented food are so good for you. Sandor Ellix Katz is a ferment expert and has written books on fermenting showing recipes, health benefits, and the ease and inexpense of fermenting. Or, go to youtube.com to watch shows that teach how easy, cheap, healthy and labor-ease fermenting is.

Hi Moonspell,
You sound like you've really done your homework by reseaching SCA! I'll try to follow your lead (the key word here is 'try'.

What you experience when you're using your hands is what I have dubbed "finger drop." It frustrates me to no end as I'm on the computer quite a bit. My debut picture book is just about ready to come out. The illustrator has a few things to do on it yet. I run an online critique group, gave up reviewing books to give myself some time for myself. I'm also doing things for 2 book publishers. I enjoy all this.

I've found that keeping myself busy like this helps me keep my mind off this SCA. Oh, I also have my hobbies and they sure help in the same way. When the fatigue sets in (which is practically everyday) I hit the bed and lay down.

Most of the foods you mentioned, I've never heard of! I've never heard of carrots in a jar, either. Can you use them on a salad? Yes, I too am eating organic, most of the time. There are times when my budget just won't allow it as organic foods are pricey! I guess CA has the same problem the USA has. Healthy foods cost much more than processed stuff. I lead the MS Support Group in my town & they have to be on a non-processed diet as well. They're up against it, too. It's just not fair. I'll have to look up the author you mentioned and download a book!

As for growing my own food, I have a bit of a problem. I'm in an apartment complex (like townhouses) and have a 4 foot by 4 foot area for planting. I have a nice size yard though! A couple of years ago, I bought a couple of packets of seeds (green onions, radishes and marigolds to keep the rabbits out) and since I was still new here, I asked the manager if I could plant the seeds along the fence of the whole yard. He blew his top! I was told under no uncertain terms that I could only plant in my planting area. Oh, that man!! Well, I'm going to try tomatoes in my little 4' by 4' area. I'm going to try to use pots. I know I'll have to get those metal tomato trellises for it them. It's in the lease. I hope I don't get yelled at again. It seems every spring when I try to do something out there, I get yelled at. I take that back. It's been every year except for last year. I was so disgusted, I didn't try to plant anything. We do have room in here for a community garden but he won't allow it. This apartment manager is a piece of work, I'll tell you.

Well, I'm tiring out fast here so I'll close here.
Deb

Hi,
I didn't do much homework- My Mom, Grandpa and many, many far-off relatives, and myself; all have ataxia- I have seen ataxia up-close.
The jarred carrots I made turned out well. I grated enough carrots to pack tightly a mason jar. I just added 1.5 tbsp of salt to 1 liter of filtered water, to make the brine. Stuff grated carrots in 1 liter mason jar, add brine, and wait 5 weeks. Keep the jar out of sunlight and in a warm place. Keep carrots under the brine. Check every few days to "burp" the jar (open the lid to dissipate the CO2 or the jar may explode due to pressure formed during the ferment). You don't have to use carrots- any veg should work (like cucumbers, beets, etc.) I like to eat them right out of the jar but they do work on salads.
I wish I had kidztale's job....I'd love to edit/review books. I am now 42, but I have had a book-on-the-go since I was 7 (the library was in a smalltown so I had to wait until I was 7). Reading/music are my current hobbies.

Hey Moonspell,
It's never too late for anyone in the writing world. People always want reviewers for their books that just came out. Just join LinkedIn.com, Facebook, Goodreads or Librarything. All you have to do is say once that you'll be happy to review a children's or adult's book (or either) & people come out of the woodwork at you! You meet lots of great people (the authors) & form friendships with them.

For editing it's a little of the same procedure. In any writing group you're in on Facebook (there are a lot of them) you just list yourself in the docs part of the group. Well, try it & you'll see what I'm talking about.

The best thing besides meeting great people all over the world? You can go at your on pace in reviewing. It's pretty flexible in editing too, but the author might have a deadline. Unfortunately, those things do happen.

Give it a try!
Deb (kidztales)

Disease Progression
 

In less than a year my ex husband's symptoms have progressed very quickly, although his formal diagnosis didn't come till about 9 months after he first realized something was wrong. After reading the types I think he has SCA type 1 he has the muscle wasting, tremors and even though he is 52 now, I think he was showing signs almost 10 years ago. Initially we though he was the only one but then his mom called, not knowing what was going on with him, and told him about how his brother (who lives in texas and is 3 years older than he is) is falling all the time, he has horrible tremors etc. Thats when we told our neuro and he immediately diagnosed him with SCA. On the MRI the cerebellum is atrophied and his 4th ventricle is enlarged, much too large for someone his age. At the rate he is going he will be wheelchair bound in another 6 months, has anyone else experience such a quick progression or know someone else who has?