[LucysFlower]

Hello All. It is a clear sunny nice day in Midwest City, Oklahoma. I wish you all a great day and happy holidays.

NeuroTalk is a great site with good posts. There are a lot of nice people here with problems that can be very disheartening, and I see a lot of positive feedback happening. Isn't it nice that you can connect to others with similar situations and get advice and support.

Myself, I have Post-Polio Syndrome, which I am so glad that it is not ALS, although my condition is now listed on the same page as ALS and other motor neuron diseases. I do have a lot of similar symptoms, but of course, my problems will just nag me forever, and will not kill me. I also have Cervical Spondylotic Myelopathy.

I have posted here a couple of times with only one response directing me to try posting in another room. Maybe my problems are that uncommon, or I am not good at asking good questions. I'll keep trying.


Have a wonderful day.

LaVerne

[Friend2U]

I am so happy to have you here with us. I have MS, so I too have an illness that will continue to cause me problems but is not fatal.

I am sorry you are having to experience Post-Polio Syndrome. I'm sorry I am one of those people who does not know anything about it.

But, I'll bet even with different illnesses, there may be many things we have in common. I know with me, it's not always the actual physical ailment that gets me down, it is the 'DEALING' with it and the 'changes' in my life that are happening because of it!

So I hope we can be of comfort to one another. And I am glad you are staying around. I hope to get to know you much better!!!

[LucysFlower]

Hello, Friend.

Thanks for your reply. Such lovely graphics!!

So sorry that you are dealing with MS. That's a tough one. I was tested for that very early. It is only in last 10 years, I guess, that doctors are acknowledging the late effects of polio. Yes, you are right, dealing with the symptoms is very important. I used to tell doctors that I monitor how I feel here the most (pointing to my heart). I'm one of those people who believes in the half-full glass.

You post looks great. So I have a question -- when you reply to a post, do you do the Quick Reply? or the Reply to Thread? or the Reply? So many choices! I will read up on how to do this.

Have a great day.
LaVerne

[Abbie]

Hello LaVerne and WELCOME to Neurotalk!!

You sound so upbeat to be dealing with all you have going on...

I see that Chemar has directed to you a more active forum where hopefully others will come along that understand and maybe are dealing with similar things as you.

As far as replying to on forums...I generally use the reply button. If I am replying to a particular person I will use the quote button.

Please feel free to roam around the board.

Abbie

[Twinkletoes]

Hi there and welcome to NeuroTalk LucysFlower! How did you choose your username?

Sorry for all that ails you, but you're right, this is a supportive group here. We can't make your issues go away, but perhaps your heart will feel a little lighter after a visit here.

Depending on what time you posted, sometimes it can get buried in the 2nd or 3rd page and be overlooked. Sorry about that! Hope you stick around and hang out here with us.

[LucysFlower]

Thank you for your reply, Abasaki, and for the reply tips.

Twinkletoes, Thank you for your reply too... I was about to ask you the same thing about your screenname.

I feel so much better now with just this much interaction. Whew! It's funny what a little bit of understanding can do for the soul.

The way I got the LucysFlower name is kind of naughty. I had a beautiful white Chihuahua, Lucy, (RIP, little friend), and when she was a youngster and went into heat before I could get her spayed, I told the vet that she looked like a pink flower back there. Get it?

Now you know, heehee.

LaVerne

(Photo is my new best friend, Bean,
a Hairy Hairless Chinese Crested)

[Friend2U]

Originally Posted by LucysFlower

I used to tell doctors that I monitor how I feel here the most (pointing to my heart). I'm one of those people who believes in the half-full glass. LaVerne

I think this is SO important to stay positive. If we can do that, 'most' of the time at least, we are going to be so much happier. We are all dealing with health issues that we have had no control over...things we cannot change...so it's important to control the things we can, such as our attitude.

Don't get me wrong...I have plenty of days when I just want to hide under a rock, I think that is natural. But I like it here at Neurotalk because when I have those days, there are friend here to pick me up and help me move forward a little bit better!!!

Do glad to have you here with us. Tell us (if you like) a little more about what physical symptoms you deal with day to day. I was not familiar with your malady, though I did google it so I now no a little about it.

Take care!
Hugs, F2U

[LucysFlower]

Thank you for such caring thoughts, Friend. Sorry, kinda long.

I can so totally relate to what you say. I have days too where I am discouraged, or I get angry about things I cannot control. Did you say you have MS?? Wow. I just feel fortunate to have what I have when I think of MS and all it entails. I applaud your upbeat personality, and you are certainly a fighter. Please share anything you want with me.

Funny, doctors still cannot really say WHAT is going on with my motor signs, just that it is higher up, maybe because they just don't know WHERE this is going. It is possible that now that I am aging, I am showing some Bulbar signs from the polio that weren't troublesome before -- choking on food, gagging, some kind of weird sob reflex sometimes when I am talking. I have choking episodes at night. I am only slightly wondering about a sporadic-like ALS.

I live in an Independent Retirement Center, a huge 5-story building, love it. I'm on the 5th floor over-looking Tinker Air Force Base. My chronic pain goes from the base of the back of my head all the way down to my tailbone, and my limbs are all achey and nasty, yuk, painful stuff. It has been called ridiculopathy. Well, that is just another "symptom," part of my soup pot full of symptoms and symptomology, blah, blah, blah -- not the actual ailment diagnosis.

All day long, I have spasms and jerks that turn into full-blown muscle charley-horses, that start in my toes and move up to my ribcage if I don't stop them. When I stop moving and rest, the twitching and muscles moving under the skin starts and then -- BAM!! -- a charley horse like you wouldn't believe. I guess my Upper Motor signs, the Spasticity and Clonus and Hyperreflexes is giving me trouble. I have Complex Partial Seizures, so some of this jerking is a Static, spikes on my EEG. Some spasms last over 20 minutes, and I can't figure out how my toes do that! They bend funny and stick together and distort and oh my, the spasms is the only thing that makes me cry out, and just sit there and whimper.

Bio-Feedback techniques: I focus on a finger or other part of my body that is not in pain, and I relish it. I pet my pup and comb her hair, take her for a walk, tease her, play with her -- my pain subsides. I flip through TV channels, flip, flip, flip... cruise, very relaxing. I enjoy colors and the sky and looking at shops and people when I am on the bus. I laugh at funny things, jokes, whatever. I talk to God. I also apologize to God almost everyday for living a necessary, rather selfish, self-centered, isolated life, but it is the only way I can deal with this, and it does get lonely. This is a bad one, lol, but I ask questions out loud to myself, and then answer myself -- all part of coping.

Take care, Friend, Have a Great Sunday.

LaVerne

*To everybody on the List* -- Have a Wonderful Day

[kicker]

Don't tell Twink but DH calls her Tinkletoes since his only MS person experience is me. Welcome to NT.