Someone Please Reply To Me

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janf

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Hi everyone, I've been on forum several times in the last mo's. i'm on mostly at night (late). I've noticed that many have disc degeneration including me. I started falling & started loosing balance after falling and hitting my head 4weeks after c-spine surgery having crying laughing spells,chest pops if crying doesn't stop can't breath then. walk totally with walker. left foot drop left hand part paraylisis. have strange skin( vertilago) change on arms. I am 53 yr. old white married female diag 2x poss als going to atl. ga als clinc dr. glass. scared but, praying for strength like alot of you. Please someone talk to let me know if you relate. i haven't had much luck.with ant replies i guess i'm on to late for yall' ha ha:-D :) :?: :confused: :? anyway help this ga. girl please......janf sorry about sorry typing its late.. GOD BLESS
 
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Al

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Hi Jan. I'm a nite owl too. But then sometimes I get on in the daytime as well. There is a pretty good website down in Atlanta Georgia at www.alslink.org that has a list of resources in the southern states. If you haven't been on their site watch the video. It might help with the coping part of this. Gerald Lawhorn has a pretty good philosophy about the disease. Hope this helps. If you need to ask any questions just fire away. Somebody will answer. AL.
 

john0812

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Hi

Hi Jan,

Hang in there! Sorry you need to be here. I CAN relate. 51, 1st neuro visits in April - no denervation at that time. Funny, 'dead' feeling in arms. Pain in arms from weak muscles overtaxing stronger ones. Numb feelings. Fasciculations increasing in mumber. Swallowing becoming an issue I think. It was a sunny day today though, and I went for a walk along the beach - thought for the day - smell the roses!

Take care and good luck to you - I'm 3 hours ahead and usually check in at night .....

John
 

MtPockets

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Hi Jan You are not alone!

I'm sorry for what you are going through, sounds a lot like me. I had a back injury in a plane accident over 18 years ago, I had just had back surgery the year before to repair ruptured discs in my lower back, was doing well until the plane accident. Blew out the discs at L4,L5, S1, no doctor would operate again because the disc material was wrapped around my nerves. The were afraid they would paralyze me. So for 18 years I have had chronic low back pain, but I was only in the wheelchair when the pain was too bad to walk.

Then in May 2006 had DX of ALS lower MND. My legs have lost almost all function now, my arms are losing their strength, I have trouble swallowing, and I have lost lung capacity. I have a powered wheelchair now and that helps a lot.

I just turned 60 September 22, and I have lived a blessed life. I try to focus on LIVING each and every day to the max. To enjoy the time I have left instead of focusing on the fact that I am dying. I spent a few weeks feeling sorry for myself and complaining to God about my circumstances and then I made a decision I did not like living like that and I CHOSE to focus on the positive. It's a personal decision each of us has to come to face and I hope you chose the high road.

I look at the blessings in my life and I am thankful for each and every day I have left to spend time with my family and friends. Sure I am still in pain, sure I can't do a lot of the things I use to love to do, but there are other things I have started to explore that encourage me and give me excitement to live.

The last thing I want to share with you is without my faith in God and that I believe there is a better place that I am going to after I die, where there will be no pain or suffering, I don't think I could have this attitude. I believe heaven is a real place and some of my relatives are there waiting to greet me at the gate, and later I will be reunited with my loved ones that are still here on this earth. That gives me great comfort and peace about living with ALS. I hope you find that place of peace in the midst of all this terrible disease.

Please remember you are not alone. All of us on this forum share the same feelings at one time or another. Feel free to vent your frustrations or questions, and share your feelings. We are here for you and we care.

God Bless
Big AL
 

rbtro

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Hi Jan You are not alone!

Jan,

I have to agree with Big Al. Sorry to hear you may be joining our club. I have posted my philosophy for living. I also feel that I am blessed and highly favored. I have a large support group and a loving wife(CALS). I pray that you have as much or more. I read this forum more than any of the others. The members and support here are tremendous. Please don't ever feel alone. GrampAl is or always seems to be here. I come as often as I can.

Your Friend,
Rich ò¿ó
 

janf

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Messages
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Country
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Hi Al

Jan Georgia girl here. Thanks for responding. Mississippi sweet potatoes are great.... My computer skills are poor but, I find my way.. Left hand no help. Saw your picture helps putting a picture with a face. Maybe i can do that soon. Al this is so weird about your back. Mine too, upper and lower. Yes Al GOD is my source, and I'm so very thankful for my wounderful husband, I shed a tear as I type this, strange how it hurts to cry. I guess thats the chest muscles along with breathing problens. I saw your daughter with you may God give them the needed strength. I have two beautiful girls both adopted, tw0 grand boys and little angel girl on the way in Dec. . Hang in there Al If I never see you, I'll see you in heaven one day. thanks, Jan from Tifton Ga.
 

janf

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PALS
Country
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rbtro said:
Jan,

I have to agree with Big Al. Sorry to hear you may be joining our club. I have posted my philosophy for living. I also feel that I am blessed and highly favored. I have a large support group and a loving wife(CALS). I pray that you have as much or more. I read this forum more than any of the others. The members and support here are tremendous. Please don't ever feel alone. GrampAl is or always seems to be here. I come as often as I can.

Your Friend,
Rich ò¿ó
Hi Rich, thanks for caring. Yes, Rich, I also have a large support. group. I can't say enough about friends and family. Friends, help me hold on because they can talk to me without being so devestated My husband is my heart and soul been together since forever ( since I was 14..) Ha! Ha!. You, are along way away from us. you hang in there. Don't give up, on the days you feel like giving up,..:-D God Bless you and yours. Jan Ga. Peach
 

Al

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Hi Jan. Don't know if you noticed yet but there is a Big Al here who signs on as MTpockets and he's the one that posted above from Mississippi. I am AL and sign on as GrampAL. I am up in Canada.
 

janf

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Messages
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Country
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john0812 said:
Hi Jan,

Hang in there! Sorry you need to be here. I CAN relate. 51, 1st neuro visits in April - no denervation at that time. Funny, 'dead' feeling in arms. Pain in arms from weak muscles overtaxing stronger ones. Numb feelings. Fasciculations increasing in mumber. Swallowing becoming an issue I think. It was a sunny day today though, and I went for a walk along the beach - thought for the day - smell the roses!

Take care and good luck to you - I'm 3 hours ahead and usually check in at night .....

John
Hello John : Thanks for responding, Swallowing liquids is my problem. Do you have difficulty speeking. I do, and then I cough can't take deep breaths, this is hard for me because I love to talk. If I had one prayer, I would ask God to never take my voice. I wonder if some people with ALS never lose their voice. Oh please God say yes! Ican't walk unless I have a walker. Cane first, fought it all the way but, gave in. I think this is mostly due to back and knees and double knee replacement. I should have known then that it was down hill for me. MY feet swell alot. Sometimes, my forehead feels tight & sore. Walk on the beach ,shame on you,:( send the beach my way. We are pretty close to Atlantic & the Gulf. The Gulf is my favorite, beautiful sand ,crystal clear water ,didn't go this year ,doctors used my husbands vacation days.. God be with you. Jan Ga. Girl
 

janf

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tifton
Al said:
Hi Jan. Don't know if you noticed yet but there is a Big Al here who signs on as MTpockets and he's the one that posted above from Mississippi. I am AL and sign on as GrampAL. I am up in Canada.
Okkkk so your not the Al in the pictures or are you? Ive'been reading Gramp Al alot. Jan:-? Oh Al i just looked at your info. So you were diag. 3yrs ago seems like you are a slow progresser? Am I right? sometimes I feel like I'm just gonna die real soon. Maybe thats in my head... My mind plays tricks on me . jf
 
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Al

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Which pictures? The ones at the Ball Game? I'm in the Want to see what AL looks like thread.
 
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janf

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pictures

yes, thats the one. oh, ok you are the right one thats great, tell your wife I will pray for her because, I'm sure this has been hard on her. jf
 

Al

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Joined
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MtPockets

Very helpful member
Joined
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Yes GrampAL is the good lookiong one

I'm the old grey beard one they call Big AL.

God Bless
Big AL

:)
 

john0812

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Learn about ALS
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Vancouver
Hi

Jan,

Not having any trouble (except for occasional fluid down windpipe I think) with liquids right now. I waas eating some soup for lunch the other day, fairly light soup with barley or rice or something small in it - that didn't seem to want to go down well. Tonigh my throat seems sore - and this has been happening quite a bit lately. Tonight though I've been sneezing - almost like a cold coming on .... guess we'll see what comes. I have had pain raiating out from both elbows up through outer arm since March, the other day the pain in the right arm I noticed was virtually gone! At the same time my thumb seems to be going numb and becoming less mobile - the positive thing is less pain!

Are you able to use thickeners with liquids to make them easier to swallow?

My speech seems to go very soft (I have a fairly soft voice anyway) but today it was back to normal.

What causes you to cough? or do you mean you cough (windpipe problems) when you drink liquids?

I don't think everyone loses their voice - I'm sure there are others here that would have a much better idea than I. You may want to record your voice in case it does go - perhaps even plan a recording for milestones in your loved ones lives out in the future? I've been thinking about recoding my voice lately since the symptoms are so unpredictable - my normal procrastination is not an option with respect to this item.

I have never been one to 'smell the roses' now I take the time to do this wondering how much time is left - then again, if this turns out to be a nightmare after all - it is a valuable lesson learned!? I can still walk fine - I can feel fascicualtions in my ankles and calves. My left ankle seems to be getting weaker now - however, I have had numbness from bulged L4-5 and L5-SI ongoing for about 17 years now - constantly getting worse - so it's hard to tell exactly what is causing what now! But I take the time while I can still do it - went for a walk on the beach again today - another beautiful day (in paradise)!
Maybe I'll take a picture and post it for you to see!

I thought about you today while walking on the beach - about the walker. One can fight it - but it's not a battle we're going to win. Easy for me to say - not even diagnosed and nothiing actually 'lost' yet. Don't know why I seem to be hyper-sensitive to all the changes going on in my body - seems like each day one hand or the other feels a bit worse or throat or ankle - or in combination.

There are a lot of I's in here, still feeling pretty needy. My wife doesn't want to talk about my symptoms, doesn't ask how I'm doing. I think she is afraid - but some days I wonder if she even cares. She has Fibro and so has her own cross to bear. I am grateful for the support I get here. Also see a psychiatrist for depression and go to a group similar to al-anon - I need it all.

Take care Jan !

I'll try to remember to take that picture for you tomorrow ..... wearing my sunglasses ...
 
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