It is ALS

[dldred]

Well my mom got her definite diagnosis today and (drum roll here) It is ALS. We pretty much knew it was headed that way but were hoping her neck MRI would show something and it would be a quick fix. HA-HA. I am suprised I feel okay about it though and it is because you have all been such a great help to me. I sent a list of questions with my mom and dad today, and the Dr. asked if I was a nurse after she read them. I am not even close to a nurse, but have learned what questions to ask from all of you. One of the questions I asked was why my mother has not had any atrophy other than her thumbs. The doctor could not answer that for me and she seems to think the progression will be faster although nothing has really changed that much over the course of a year. I am totally disagreeing with that aspect of this. As for you ALS you can kiss my butt, hit the road you no good rotten stinking disease, no one wants you around, why don't you find something better to do. My family is going to teach you not to mess around with us. Okay that's it for my little tantrum. I have decided to help my mom by making her laugh at least once a day and never ever giving up.

Thank you all for your help.
Dana

 

[Marjorie R. Wilcox]

So sorry about the diagnosed, but you are surely on the right track. Your sentiments are ours too.

 

[olly]

sorry to hear your mums diagnosed dana,but it sounds like her progression so far has been slow so thats good.
you have such a great attitude and this will help your mum so much.

 

[John1]

...The doctor could not answer that for me and she seems to think the progression will be faster although nothing has really changed that much over the course of a year. I am totally disagreeing with that aspect of this...Dana

Dana,

I'm sorry to hear of your mother's diagnosis. My doctor told me I had fast progression. That was 8 1/2 years ago. I'm typing this from my office where I still work and drive. Many doctors seem to lack any real understanding of progression rates. If you have observed little progression over a year, I think you can be fairly confident that she is a slow progressor.

 

[hisfirstdaughter]

Dana, I am sorry to hear about the definite diagnosis. I love your attitude though, keep that up!

Never ever give up!
Chelsea

 

[rocmg]

One of the questions I asked was why my mother has not had any atrophy other than her thumbs. The doctor could not answer that for me and she seems to think the progression will be faster although nothing has really changed that much over the course of a year.

i thought the rate of progression was fairly constant --- like, it would not suddenly speed up at some point?

all these doctors need to start getting their story straight. what benefit is there to telling a patient if they are a fast progresser or not? it just doesn't make sense.

this whole bloody disease is just so gut-wrenching and unfair.

 

[thelma313]

Dana, I'm so sorry to hear of your Mom's diagnosis. Even though you were expecting it, it definitely takes some time to wrap your head around.

I thought that progression could speed up or slow down randomly, even plateau, but I was told there was no way to predict the rate of progression since every case is different. My father's doctor did not say whether his progression is fast or slow. I feel like it has slowed down in the past few weeks. He's even improved because of the added nutrition he's getting from the feeding tube so I would take what your doctor said with a big grain of salt. Your Mom might plateau, you never know and with your positive attitude I would not be surprised! Your Mom is lucky to have you on her side. I would not want to be ALS right now, because you sound pissed! GO DANA!

 

[DgtofTNfan]

Dana,

I am so sorry to hear that your Mom's diagnosis was confirmed. That stinks. I too have heard that progression varies from person to person and there is no way to predict how a person is going to progress. I think we all need to have a punching bag named ALS that we can slug, kick or roll over a couple of times a day just for the heck of it.

Another Dana

 

[concerned friend]

This is my first post! I have been reading everyone's insight and opinions about ALS and I would really like to have some people that have been through this and are going through this give me some feedback. My dearest friend from childhood has been told by her neurologist that more than likely she has ALS. She is a 42 yr old mother of four children. We are all devastated. Her symptoms are constant muscle spasming and twitching in both arms/shoulders and thighs for about 10 months. You can just sit and watch her arms and legs twitch constantly and she is now on meds to help her sleep from it. Over the past couple months her right foot is now not working. She can't pick her toes up or walk on her heels. The stim test shows that no stimulation is getting to her right calf and foot and she kind of drags it when she walks. The neuro told her that she definitely has a Neuromuscular disease and she will probably die from it. She is now being referred to an ALS specialist. What does everyone think about her symptoms.

Colleen

 

[Big Mike]

Hi Didred and Concerned Friend,

As terrible as this disease, there are two silver linings: (1) Some people progress slowly; and (2) it's not necessarily fatal if fully treated. Keep the hope up!

Mike

 

[Karry]

I'm Sorry, I know how you feel as my Mom was just diagnosed with ALS as well

Hi you sound like a fighter, good. I am the only advocate for my mom, I am her only child and she is single. I realize that I am using my husband to vent to more than I should so I just joined this forum to seek out other people in the situation that we are in. My Mom is now in "moderate stages" according to the neurologist who diagnosed her. I have been seeking help for a full year, her symptoms varied so and weight loss as well as extreme fatique were at the top of the list. She was tested for many diseases. Her right hand no longer works at all and the wrist is on its way out as well. I voiced concern about her hands a year ago, all of the muscle is gone in the hands now. I had to reach into her sleeve to grip her crippled hand and wrist and pull it through to get her shirt on for the first time yesterday. 11 months ago she was still driving, she is 69. Thanks for posting, Karry

 

[mndireland]

karry and Dana, your stories have touched me. 4 weeks ago and a day, my mother died from als. She was diagnosed 17months earlier. Up until then she was working 40hours a week in Dublin International Airport (a busy job), driving everyday, socialising every weekend and on holidays quite a lot! My mother was a widow for 28years when she died, and a real trooper. She only started to live her life to the full as her kids became older, Im the youngest and am 30now. Her independence and strong nature showed in her 4 children whom she looked after for most of our lives. In the last 10years she made good friends and started to travel and shop for herself etc, after years of struggle it was great to see her come alive. Then als took hold of her. The detioration was the hardest thing I have ever had to watch. We were told by doctors that everybody progresses difficulty and they cant see the rate until months of check-ups. The doctor told us that we would be able to see for ourselves as we knew her best, and we would see what rate it progressed.

Unfortunately my mums rate of progression was quick, and almost on a weekly basis we had to change and amend things in the house and daily life to make things easier for her and me. I became sole caregiver and do not regret it for a moment. I know I have sisters but it was down to me most of the time for almost everything, so Karry this will be difficult for you. If you want to ask me anything or need advive please feel free to ask, I will do all I can.
I remember mum saying to me " Youd be ok if you got this disease you know all the tricks" Ha, I got all the tricks from this forum! The people are soo good, and even if you think you are asking a ridiculous question, somebody has experienced it before you and will have some solutiion, believe me!

I know you will get through the next months/years/decades ahead. Make sure to keep doing things you both enjoy.
My prayers are with you

 

[concerned friend]

Hello Mndireland,

I don't know if you read my post from earlier, but I was wondering if any of my friends symptoms sounded familiar with your mom's. I realize that she progressed quickly, really unbelievable how fast. Do the symptoms that i spoke about sound really typical of als? Do most people start in the upper extremities or all. With my friend, she has really been hit in her legs and especially her right calf and foot.

Thanks and I am so sorry about your mom's rough journey.

Colleen

 

[Karry]

Hi mndireland, Thank you for sending Dana and I the message. I truly appreciate the response. I only joined this forum yesterday morning before work and wrote on the first post that I saw because I had the recent diagnosed of mothers in common with Dana. I havn't had a chance to figure out the site just yet. I would like to ask questions to you from time to time. Your mom sounds like quite a woman. You should be very proud of her. My mom and I have had a unique relationship, sometimes like sisters...and with me being the older bossy type of "sister figure". She looks to me for the lead and has when ever difficult situations occur. My grandparents helped raise me as my mother was un-married when I was born. She was a hard worker she worked full time in retail for years for minimum wage, finally ten years ago she became a home care giver and also drove around all of the time "taking care of the elderly" she would say. She loved her job and wished that she had done this work sooner. She worked 35 hours a week until approx. 15 months ago, she was given less and less work because of her fatigue. Last June, 11 months ago she was down to 8 hours a week and the company had to let her go. She wasn't able to do the work any more. Now the agency that she worked for sends help for her. My Daughter worked at 'Barretstown' for several months last year. She will be glad to know that a lady from Dublin has been in touch with me. She absolutely loved it there and made many friends that live through out Europe. She is a child life specialist and living in Washington DC right now,8 hours away. If she were near she would visit my mom some. Thank you for the support. Karry

 

[mndireland]

Hi Coleen, obviously there are a many different neurological disorders and I couldnt say if this was als or something less serious. I wouldnt even try. My mum started off with just weakness in her right hand and fingers, unable to open jars and bottles etc, this went on for months and months. When we seen the neuro she noticed the twitching in the upper arms, both mum and I never seen them and they never caused her any discomfort then. The twitching never did to be honest, it was only the pains a lot later on that caused discomfort. Mum was still able to walk right up until the day before she died, yes her legs were very weak and she needed help and had a few falls, but she still managed to get herself from room to room on good days. I hope the diagnosed is not als but only a neuro can tell you that, it it is, its really not the end of the world, there is soo much pals can still do and do well after diagnosed, dont lose hope.

karry, Im glad you feel you can talk to me, and I will help anyway I can. I found the advice on this site incredible, I would ask the docs questions and a lot of the time they didnt know the answers, or had no suggestions, or would tell me everybody is different. On here they would just offer advice and 9/10times it would work! From coughing issues, to swallow issues, sleeping issues etc
Yourself and your mum sound a lot like me, In the last 17months mum and I became so close, I cut down my hours to look after her and I am so glad I did. The last few weeks have been so difficult. Im due my first baby in 2 weeks and I know mum wanted to hang on to see the baby, unfortunately she died 6 weeks before my due date. In the end when she kept saying I just want to see the baby, I told her you can see the baby from heaven and look after us both from there. Infact I hoped she would see the baby, but I didnt want her hanging on painfully when I knew it would upset her so much not to be able to hold or feed the baby. Oh and I told her now she can help me out in the delivery ward! When we buried her I put the ultrasound in her hands and told her to look after us, and I know she is.

Sorry I went off a little then, its still all just so fresh!
Advice for now: Take all the help offered even if you dont need it yet, when you do need it you may not be able to get it! Have fun and do the things you enjoy....