hand atropy

[cyberhart]

hi my name is steve ive had servere faciculations for 14 mths now all over my body was told by nuro that it is bfs but i have atropy in thighs and my fingers look like they have been in water but no weakness is this als or is there something else that could be responcible

[liz]

Hi Steve -

I don't know what you may have but it sounds like it is time for a second opinion. If you can, seek an exam from a specialist in ALS/motor neuron diseases.

Liz

[Mike27]

hey Steve
I'm not sure what BFS is but your doc is leaning towards that apparently.
There are many diseases that look like some of the symptoms of ALS, but self-diagnosing is the worse thing someone can try. Leave it to the pros, that's why they get paid the big bucks! If you're not sure about what the doc says, then like Liz said, get a second opinion.

Good luck!

Edited to add:
I'm not saying to leave your condition in the hands of someoone else, you have to become an expert in what is happening to your body. But I am saying to not discount what the experts tell you.

[CindyM]

My doctor says that an informed patient is easier to treat as we become partners in our care. That said, if you find that the research is making you nuts then take a break for awhile Cindy

[liz]

Hey Annmarie -

I just noticed your from Palmyra. Are you a native? I was born and raised in Lancaster, and still have family in and around Lebanon. Small world....

Liz

[patricia1]

I am not sure, but I asked that question about atrophy of the fingers, and I thought someone said that the tips of the fingers do not have muscle, and do not show atrophy like soaking them in water. I could be wrong, but let the experts chime in on this one, they know better, but take it from the biggest worrier around.. RELAX.. Annmarie That is called atrophy the fingers move from the tendons I have the samae look to my fingers pat

[landscape]

Just a comment about hand musculature: although the muscles that bend and stretch the fingers are not located in the hand itself but in the forearm (and operate the fingers by means of long tendons) there are many small muscles that lie within the hand (the Intrinsic muscles of the hand).

The mound of muscles at the base of the thumb for example, helps to operate the thumb. The muscular pad on the little finger side of the palm assists with the little finger's function. Other small muscles allow us to spread the fingers apart or pull them together. These "intrinsic" muscles are important for fine motor control.

The loss (atrophy) of these muscles changes the appearance of the hand.

[Peg B]

Thanks Landscape,

I cannot move my baby finger on my right hand to the left - toward my hand at all. I can sometimes now move it to the right but not always. It is curved down always and I cannot straighten it. The mussle in the hand under is extremely weak and if you put change in that hand it would fall on the floor unless I move my arm. I cannot write checks with it with a regular pet without a great deal of effort. I can use a gell pen better because I do not have to put pressure on the pen to make it work. This all makes better sense to me now. I never asked the Doctors to explain how it works. After 2 neuros that thought I might have a pinched nerve and even got an EMG from one, I asked if I might have MS or ALS. They said no. Two years later when I could not move the baby finger at all I went to a hand surgeon who said nothing broken and he sent me to a neruo. This neuro was quite upset with the other two and said I had ALS/MND on Oct 31 2006 and sent me to U of M = ALS clinic. They are trying to rule out Multifocal Motor Neuropathy (or rule it in) and I just started my second round of IVIG as I seem to have some improvement. I go back in August 2006. According to EMG and nerve conduction tests, I also have lower neuron issues in 3 of 4 limbs. No indication of upper neuron at this point and very slow progression. So I keep reading here and find it very helpful. I am on LTD and actually retired after after 36 + years. I am very lucky.

Today though, I got pretty upset because I cannot fill out the paper work for SS disability. I typed a bunch of it out using a voice recognition program (DNS) but some of it is a lot of check marks and fill in specific blanks. I will have to get my daughter or husband to help me and it's the first time I have felt really bad. So I came here. Thanks. I understand better. God Bless. Peg

[CindyM]

Hi Peg. It must be frustrating to lose the use of your hands. My legs don't always cooperate but I got over missing that a few months ago. Not sure if I'd adjust as easy to losing the use of my hands, though. Already I'm very frustrated on days when I drop things. I can see where it would be discouraging to have to ask for help writing! Cindy

[liz]

It seems to me that we all somehow manage to cope with it as it comes. My hands are going first and I'm finding ways to make do. I can't figure out how Pat gets by without her voice but she does. Cindy is working around her wobbly legs. And don't get me started about the caregivers - is there a more resourceful bunch of people in the world?

I think we should all give ourselves a pat on the back, if we can still reach. Or get somebody else to give us a pat of the back.

I was just really happy this morning that it's finally warm enough that I didn't need to wear socks. That's one aggravation I won't have to put up with again until October. I wonder if I'll still be able put socks on by myself next fall. Oh well, I'll wait till then to worry about it.

Liz

[CindyM]

You are right,Liz. We could each of us be in a worse spot. Better to be greatful for what we still have/can do! Cindy

[Paty]

My respect to you both.

I don't know if I would be able to handle a situation like yours, just looking at my husband makes me so sad, after being a very independent person all his life, always so sure of himself to look at him in a bed, with his fingers all curled up, not being able to wash his teeth, or to eat by himself,or talk, after having been such a healthy person who had never been sick, makes my heart hurt for him and all the people going through this terrible sickness that I think nobody deserves.

Hugs to everyone PALS, CALS And their families.

Paty
Husband's Caregiver DX 10/17/05
Baja California, Mexico

[JACKIEMAX]

i just read what paty had to say about how it hurt her to have to watch her husband become so helpless after being so healthy all of his life. i have the same situation as paty and most likely many other of the caregivers in this forum.

my husband was dx in jan. of this year, and not only can he barely walk from room to room, but he is also losing the use of his hands. he can barely hold a fork or pencil anymore and this is so frustrating to him.

when i watch him struggle to eat, to walk, to take a shower or brush his teeth, my heart actually hurts - i can feel the pain as if it were me not being able to do those things. caregivers that are spouses and who love their mates with als, often wish it were them that had the disease instead because we hurt so badly for our partners.

this is a monster disease and i am thankful for every single day that the good lord blesses us with.

with hugs to everyone here,

jackiemax

[CindyM]

Thanks Paty, you're pretty special yourself. I think it takes a special person to take care of someone who is as ill as Jorge. But as the old song goes, nobody ever promised us a rose garden life! Your friend, Cindy

[Paty]

Thank you both Jackie and Cindy for your friendship and also to all the wonderful people I've come to appreciate in the forums, I don't know what I would have done if I hadn't found this place.

Wonderful gentlemen like our dear friend Al, Mt. Pockets, Mike, Quadbliss. and other ladies like Liz, Lunarruna (Beth), Beebe, Boots, and so many more.

Friends forever.

Paty
Husband's Caregiver Dx 10-17-05
Baja California, Mexico

[shellshell]

My dad pretty much is in his wheelchair at home and of course when we go somewhere with him he is in it. It is VERY difficult to watch him decline so rapidly, it was just January 2007 that he was still working and now he's in a wheelchair most of the time and his left hand cramps up and he has to use his right hand to pull his fingers back out to a normal position. He is also experiencing a lot of muscle cramping, like "charlie horses" all over.

I love both my parents so much and will do WHATEVER it takes to make this as of a transition for him as possible. My husband and I mow their lawn and do most of the yard work for them and he just follows behind us in his chair. He has finally given in to us "helping" more, he's very independant...

His birthday was yesterday (he turned 59) and we had a "good day". These days we refer to days as "good" or "bad" but yesterday was good. I am so very excited for him, we live in Arkansas and my husband and I found one of his old Vietnam buddies who lives in North Carolina and my dad, mom and another family member are traveling there tomorrow to see him. I know it will be such a long trip for my dad but if he is able to go I want him to do so! Anything that brings a smile to his face right now is what brings a smile to mine.

We, as caregivers feel so helpless sometimes and almost like we just can't do enough. I see my dad everyday and do anything I can to make things easier on him and my mom from cleaning their house to taking down the shower doors and putting up a shower curtain so he can use the shower chair we bought.

Right now, I feel like I just can't get enough of him, like I want to be with him every minute of every day!!! I never ever want to regret anything or take anything for granted...This disease makes you put things in your life in such perspective!

This forum is such a God send. I've learned so much for all of you on this forum, I truely feel like part of the ALS family...Thank you so much for taking me in! :grin:

Michelle

[MtPockets]

Whew my head has swelled up so much from all the compliments that my hat won't fit anymore. Love you guys and gals. Thanks so much for being a part of our lives. You make it almost a joy to be going thru this. Well, almost! :oops:

I too have the hand cramping problems where it curls up like a crab or something and then I have to have someone straighten out my fingers. Feel like I'm in a Frankenstein movie sometimes, Augg, Egor hand me the brain saw....

Anyone ever see the movie of Frankenstein with Gene Wilder where they have Frankenstein dance, like on Broadway? Very funny movie. I think like him I got the Abby brain, you know abby-normal.

Have a great day friends and try to laugh a little. :-D

God Bless
Capt AL

[JACKIEMAX]

after reading michelle's and paty's posts, i just marvel at how closely we all are in this forum, and how similar our lives have become. i have discussed anger with paty, and tried to explain that our husbands are not angry at 'us', but at the disease, and we just happen to be close by when that anger explodes.

then i read michelle's post, and think 'wow', her feelings are just exactly like mine. i, too, will do anything to help my husband have as many 'good' days as possible. i, too, want to be with him every second of every day. i, too, hurt so very much when i see him losing ground so quickly.

it seems we are all going through the exact same things, almost at the same time, and so to all of you other caretakers, i salute you......

love and hugs to all my forum friends.

jackiemax

[shellshell]

jackiemax,

You are so right, when my dad was first diagnosed with ALS, every morning I would wake up thinking " what a horrible dream" then I would have to go thru the whole thing all over. I still experience that from time to time but it is my dad's outlook on this horrible disease that has kept me going along with being able to talk to everyone on this forum. I have friends and family that I can talk to but unless they are experiencing the exact thing you are, they don't completely understand.

I would have never thought that I would become so close and dependant on talking to people over the internet but my goodness, what a blessing you ALL are to me...

Michelle :-)

[quadbliss]

Michelle is right. In general, people around the PALS look to them for cues on how to react. If the PALS retain their dignity and project a positive disposition, others around them tend to feel more upbeat about the situation.

Mike

[Paty]

WHEN ONE STAYS ALONE, "FRIENDS" COME FOR A FIRST VISIT AND NEVER COME BACK, EXCEPT A FEW WHO ARE JORGE'S REAL FRIENDS, ONE HAS BEEN HIS BUDDY SINCE THEY BOTH WERE 5 YRS. OLD, THE OTHER SINCE HIGH SCHOOL, THEY BOTH LIVE HOURS AWAY FROM MEXICALI, BUT WHENEVER THEY HAVE TIME THEY COME AND VISIT AND THEY KEEP IN TOUCH THROUGH PHONE CALLS OR THROUGH THE MSN MESSENGER.

IT IS SAD TO SAY THAT THERE ARE PEOPLE THAT DON'T UNDERSTAND WHAT A PAL AND A CAL ARE GOING THROUGH,( even our own family) SO HAVING FOUND THIS PLACE AND AS I SAID BEFORE I CALL IT "My little house on the prairie" I remember when I was a teenager, watching a program that I loved, called Little House on the Praire.


Paty
Husband's Caregiver Dx 10.17.05
Baja California, Mexico

By the way I put up a picture with Jorge applying pesticides as my avatar.

[CindyM]

I too find it easier to cope since I found this forum. It helps me to know that people in all stages of disease live full lives and maintain close relationships with those they love. And when I get down, somebody here is always ready with a joke! Here's wishing a great evening to everyone! Cindy

[Frizzel]

I find connecting somehow to everyone here, just reading your posts is so encouraging. I look forward to it every day. Yes, I've seen that Frankenstein movie Captain and loved it! I'm laughing even thinking of it. My husband dances like Frankenstein moves.
I've been getting the 'claw' curl starting on my left hand. The wrist is getting weak and probably the scariest part for me is I'm having jaw cramps and spasms along with atrophy of my chin. I was told I have PLS, I also after going to an ALS clinic one month ago was told, the head neurologist says she isn't convinced it's PLS because I have both upper and lower involvement now.
I keep thinking that today is what I have and I am determined to make the best out of this day. So, our son's girlfriend came by and we planted yellow and purple pansies, gerber daisies and my hubs got the garden ready to plant. We'll plant mostly root vegetables so there isn't a ton of work trying to keep things harvested. Our son is helping with the remodel of our bathroom to make it wheel chair accessible and for today, in the Pacific Northwest, the sun came out. I am grateful...
People die suddenly without any warning. At least we can get ready. Just thoughts....I think we'll rent the Frankenstein movie!!!! and 'Walk this way'....ha

[CindyM]

Hi Frizzel. You are so right. Most people don't get the chance to prepare for the end, and we all know it will happen someday. Someone asked me once how do I live with the fact that I may be dying and I said, "I've been inching towards the last day of life since the day my Mom brought me into this world." Hugs, Cindy

[Frizzel]

Good thought....I think I'll rent the movie "What about Bob" again. Baby steps to the finish line. Hugs to you, too. Any word on plantings of any sort in the yard?

[Frizzel]

Have youi looked up 'Helping Hands' on the website? I've read and heard good things about people supporting the caregivers once a week for a couple of hours. They will work in the yard, clean, whatever is needed to relieve some of the work load. Go on the web and check it out. I loved reading you mowing the lawn and your dad following behind on his chair. Made me smile....

[shellshell]

I am so glad that my post about my dad following behind me in his chair while I am mowing made you smile...It's puts a pretty big smile on my face too...I hope he can do it for many years to come!

Have a wonderful week!!!

Michelle (shellshell)
:mrgreen:

[vmd]

How do people with ALS manage if they live alone? This is my situation. In addition, I need to make a decision as to when to quit working. I am a teacher, by the way.

[Frizzel]

Hey Shell! How's dad? I thought of him and smiled today.

[shellshell]

Thank you so much for the post and for the smile! My dad has been a little depressed lately. Their air conditioning went out in their house a few days ago and they had to stay at our house for a couple of days. My husband finally got it fixed last night but before he did, I pulled up at my parents house and my dad was just sitting in his wheelchair in the driveway looking around. I could tell something was wrong and when I began talking to him he just kept saying he was depressed. I am so very worried about him. I want to badly to fix everything for him. He is such an exceptional man and it just breaks my heart in two to see him in this mental condition. It's so hard seeing someone who never sat down, ever, always up doing things not even be able to walk to the mail box to get his mail. He always had some sort of project going on at the house and now he gets too tired and then he gets depressed that he can't do what he used to. He is on Lexapro but I just don't think it's helping like it should.

Of course I've been crying all night worried about him and cried the entire way to work this morning. I hope things get better for him soon. I think if he could at the very least get his disability started and have funds coming in it would brighten his spirits so much!

Thank you so much for thinking of me today Frizzel. I feel so blessed to know all of you. You keep me going!

BTW, my husband and I are working with the state agencies to try to adopt (we don't have children) and I am going to be an aunt again, another boy...that makes four boys that my brother will have and they all live right next door to me and my husband...They keep us BUSY! :-?

Much Love!
Michelle (ShellShell)

[Frizzel]

Shell,

Be sure to talk with your dad's doctor about depression with this disease. Give him a hug from me and let him know I am cheering him on behind the scenes. He still has so much to offer his family. If he still has his voice, maybe have questions that you can ask him and he can record stories of when you were growing up and what life was like before the disease. Ask him to share stories of his life. Leaving the legacy for those who come after him.

Gotta run...well you know what I mean.

Frizzel

[CindyM]

What a great idea, Frizzel! I used to spend lots of time with my granddad after grandma died. He was alone and isolated way out in the country, so I'd go for long weekends and such. I found he loved to talk about his past, and being a history buff I liked to listen. I was too young to understand the benefits of these long talks, but they also had a hidden benefit: I tell these stories of my Grandpa to his daughter, my Mom. It settles her down when she's agitated and reminds her of her childhood, which of course I'd never have known if I didn't ask! Cindy