Mother recently passed away

[taylor22]

Hello, I am a 23 year old female. My mother recently passed away from a very long battle with ALS. I have been with her and seen everything every step of the way...what a horrible disease. I am new to this site and am looking to talk with some people who may have had similar situations (family memeber, friend, etc with ALS). I have also been very worried about some of my own symptoms for the past few years. I will say that a lot of my problems are probably maximized by anxiety, but even so I have had some strange issues. I started noticing some twitching in my left calf and foot about 2 years ago. There was not really a whole lot of weakness, but it had sort of a stiff, achy feeling at times. Since then, that has continued, but I also noticed that about a year ago, my toes on that foot would cramp if they were pointed or scrunched tightly. A few weeks ago, I was walking into the store, and that calf had a weird sort of contracting sesation in it....almost like a big, long twitch. Before that, I was putting all of these things in the back of my mind, but that really freaked me out. That sensation has continued...some days more than others. It happens mostly after I get up after being seated a while. I am really not even sure how to properly describe it. That foot has also gotten a lot more achy, like I have pulled the muscles in my foot. It seems to have a "falling asleep" sensation (not tingly, but hot and cold....like the circulation is not very good). I feel as though it has gotten weaker, but not significantly. I feel really stupid even asking these questions, because I am probably just making things worse by worrying so much, but seeing what my mom went through makes me hypersensitive to this illness. My mom's case was sporadic as far as they could tell (but we have had family members with other neuro diseases), but these symptoms still concern me and I can't seem to get them out of the back of my mind. Do these things seem like something to be concerned about? I keep telling myself that in 2 years, I would probably have seen more symptoms, but I know every case is different. I am not looking for a diagnosis, just mainly support. I don't want to run to my doctor and freak out if there is nothing to freak out about.

 

[Phil M]

Sorry to hear about your Mom.

 

[hopingforcure]

Taylor,
Welcome, Sorry that you are so familiar with this monster. Your mom must have been a lovely PALS, for you sound like a caring and kind young daughter. I completely understand your concern and worry.. But let me tell you that I do not think you should be concerned about ALS, the things you mentioned would probably not even send you a red flag of worry for ALS if you were not so informed about the disease. Please relax, take ALS out of your mind. Visit with us whenever you would like, do not wory about ALS...

 

[peter57]

Welcome taylor22 to this site,

I am sorry to hear about your mum.

There are several people who are in your same situation on the forum and i am sure they will post a reply to you soon.

And please don't worry about having ALS. You have been through a lot in the past few years for someone so young and i am sure, after being with your mother through her journey, you understand the rarity of it and the chances of you having/ getting it are very very slim.

Peter

 

[taylor22]

Thanks to both of you. Hoping...that is a great quote and words to "live" by! You are right that I am probably just over informed about the disease. I will try my hardest to not let it all get to me. It is such a devistating disease though and so hard to see any loved one go through (especially your best friend). I am glad I got on this site...Like I said, I am mainly looking for some people to talk to who understand. I got the name of this site from someone at my mom's favorite organization (ALS TDI). I have never talked to anyone else who has experienced loved ones with this disease. Even though I have a lot of support from friends and family, no one completly understands this disease, becuase they didn't live and breath it everyday for 11 years (except for my wonderful mother of course!) I probably shouldn't have waited this long to join something like this, but I always felt a little guilty complaining about my problems or grief, when clearly my mother was going through something far worse! She was a lovely PALS...the strongest person I have ever met...I miss her terribly.

 

[hopingforcure]

Taylor,
I can honestly say how glad I am you found us. I have a son who is 15, he has been dealing with my health issues since he was 12. When I see how wonderful you are, I realize that although my son is ging through such a horrible experience, he can become a wonderful adult just like you did. He is a sensitive kind child, and I look at what you kids deal with having a ill parent is just wrong, but look at what a kind and caring young lady you are.. Stay with us, be a member of our family, you belong here.

 

[taylor22]

Thank you Peter...it is really nice to hear from all of you. Unfourtenetly, I always felt that my mother was the only one I could talk to about all of this because she was the only one who actually understood.

Hoping...Thank you, all your kind words really mean a lot! Your son must be a wonderful person just like you. It is hard for children to deal with, but not anywhere near as hard as it is for the PALS. I was about his age when my mom got diagnosed, and I will tell you that I didn't deal with it well for a long time. I was very angry. I knew that was not the right thing to be, but for some reason no matter what I did, I was angry about it. I was angry that my mom was sick. I was angry that my mom couldn't take care of me anymore, I was angry that no one around me knew what it felt like, and most of all I was just angry that I had to watch the person I loved the most go through all of that. It is very scary (espically for someone as young as 12). I don't know how my mom did it, but she somehow dealt with the disease and still put me and her parenting of me first. Eventually, I came to terms (somewhat) with it, and decided that if she could live with this everyday, I could somehow learn to accept it. I also realized that all the things she was doing to fight this disease...all the procedures, equiptment, ect., were probably becuase she wanted to stick around to raise me. She was wonderful and fought this disease so hard. She never lost her creativness, stubboness or whits, and never gave into this disease. She always did things when she wanted to and the way she wanted. You all are very special people, and I really admire you for reaching out to the people on this site to help with their problems (some probably very petty compared to just your day to day activities). I really appreciate everything, and I will stay with this site and look forward to hearing from all of you.

 

[Marjorie R. Wilcox]

You are to be admired too, for taking such loving care of your mother. We give our condolences. I hope you can now go on with your life, keeping those wonderful memories of your mom close to heart, and not subject yourself to worry for yourself. Your symptoms don't sound like anything my husband has experienced... at least not yet. He is 2 1/2 years into his diagnosed. He describes his feelings in the muscles as a tightness or stiffness, a curling of the fingers or toes in the morning.... not what you described for yourself. His "twitches" are more of an involuntary motion or spasm.... like when he sits with his legs elevated, his one big toe goes up and down at one speed, and the other big toe does the same, but slower. When he drives, I can see the "crotch" between his thumb and forefinger spasm. I would say you would look for overall or localized weakness or a loss of balance, symptoms from the neck up, or visual loss of muscle. Remember, I am not an expert and we shouldn't self-diagnose ourselves. If I were you I'd go to a neurologist and have a going over to relieve your worries. Well worth it all. Blessings to you for your future.

 

[Justme111]

Hi Taylor

Just wanted to say how sorry I am that you've lost your mom......I also lost my mom at a young age so I know how heart wrenching it can be.

Caring for her is the best gift you could've given. Go on in life smiling, knowing life doesnt end here, You two will reunite.

 

[juliefitz]

Hi Taylor,
My mom, too, has ALS and is only 61 years young. She is my best friend and I dread the day she leaves me and our family. I see her everyday (she lives only 2 miles from me) and I have become hyper-sensitive to the disease, seeing what it is doing to her on a daily basis. I try very, very hard to not think about it, but its nearly impossible not to think the same thing will happen to me, especially since parkinsons, dementia, and now this, is in our family. Please try not to let it consume you...I know from experience how it can, and how I worry about every little thing, and how destructive those thoughts and the worry can be. Im so sorry to hear about your loss-our mothers sound very similar, that is, in their love of their children and their willingness to try and be here for us at any cost. I only hope that I can be a fraction of the mom to my sons that she has been to me thus far.

Take care, Julie

 

[taylor22]

Hi Julie...It is so comforting to hear that there are people out there with simlar situations. It reminds me that I am not alone (and neither are you!). I am so sorry to hear about your mom. My mom was 60 when she passed away. She had a long, hard fight though. She really was the most incredible person....I think you have to be to live with ALS for that long with such a positive outlook. All of the PALS on this site have amazed me as well. They are all so strong...truly amazing people. Lets make a deal....I won't dwell over it and you won't dwell over it! Easier said than done I know! It is such a horrible disease, but we cannot waste our lives worrying about the "what ifs"....and our mothers wouldn't want us to either. I have my good days and bad, but I am happy that I have found so many wonderful, understanding people on this site to turn to. Keep in touch!

 

[Hayleywart]

I can totally sympathise with you, as I am in exactly the same boat. I lost my Mum just three weeks ago to ALS. Since her diagnosis, I have been living in absolute terror than it may be the genetic variety and that I, my brother, my children, my neices, may also be at risk.

I have constant fasiculations, mostly in my right arm and shoulder. I sometimes ache in that arm (just as my Mum did) and often feel that it is weak, or just 'not doing it's job properly.' I am too scared to go for an EMG in case it is positive. At least this way I have some hope that I don't have it. My Mum's dad, and his dad, both died young so I don't know whether they would have had it or not.

However ....

What I do try to remind myself is the rarity of familial ALS. I also try to say to myself 'If I had never heard of ALS, would I even be noticing these symptoms?' That one works well for me, because the answer is generally 'no'. I guess this is a fear I will always live with, and like you having seen the whole hideous progression of the disease in a loved one (I was my Mum's primary carer - she lived at home with me) it does make you highly sensitve to it, and far too educated on each and every symtom.

Another thing which has helped me is that I bought a book on health anxiety. It has helped me to stop worrying. It hasn't convinced me that I don't have ALS, but it does help me not to spend all day every day worrying about it.

I wish I could be more help, but perhaps we can both take heart in knowing that a) familial ALS is very rare, and that b) it is probably very normal, and common, for family members of a PALS to worry that they too have, or will have, ALS.

 

[hopeful warrior]

Hayleywart and taylor22~ I am so sorry about your mom's. How wonderful for them they had you for daughters. I know you will celebrate their lives this Mother's Day.

Hayleywart-a book on health anxiety...What a fabulous idea! I agree being surrounded by sickness often begets feelings of sickness. There have been times I would have loved a book on that topic. Could you send me a message and let me know the name of the book and the author, please?