Sad and Scared

[Melissa in Texas]

Hello,

My name is Melissa and I live in Austin, Texas. My mom, age 65, was recently diagnosed with ALS. We are going to Houston for a second opinion on June 1st.

My mom began having trouble speaking and swallowing a few months ago. She thought it was everything from a stroke to needing dental work. She has recently seen a neurologist and has been through several tests (MRI, muscle tests, spinal tap, etc.) and lots of blood work. What I've learned about the diagnosis is that it seems to be "last disease standing". They rule everything else out and all your left with is ALS.

Just since her diagnosis on April 7th of this year, things seem to be progressing quickly. Her swallowing abilities have declined even further, she seems to be short of breath and is loosing strength in her hands and arms. These are just the things that I'm aware of. I feel like time is short. I don't want to be negative, but seeing the changes happening so fast it's hard not to be.

My mom isn't ready to accept this diagnosis so talking about it with her is very difficult. It also means we haven't been making any preparations of any kind. I myself have just recently started to educate myself more about ALS and look for answers, support, anything. Most of what I have read has been so "text book". I've been reading many of the postings the last few days and find them to be bitter-sweet. Some of what I read scares me so but there are also the successes, compassion and knowledge from real people dealing with real issues and I find that comforting.

Assuming the diagnosis is accurate, how do you talk to your loved one about preparations, their wishes, etc. when they seem to think that if you talk about it, you acknowledge the disease. She can't even bring herself to read the brochures we got at the doctor's office. It's frustrating. I want to be pro-active in her care and yet I want to be respectful of her wishes. When I converse with her, we rarely speak of her illness. I keep thinking that maybe after the second opinion visit, again assuming it will still be ALS, then she might want to talk. I hate what my mom is going through and I'm so sad. I'm sad for the reasons anyone would be sad, but mostly for her.

I apologize for going on and on. Apparently I have a lot to say. I appreciate any thoughts you might have

Sincerely,
Melissa

 

[Al]

Hi Melissa. I am sorry for your mom's diagnosis. I know it is hard for the family to deal with. I am the one with it in our family. Denial is one of the first ways of dealing with this. You just think it is a dream and you will wake up and things will be fine. Just about everyone I have ever talked to about ALS has gone through this stage. It should pass eventually and as you say it may hit home after the second opinion. She needs your support and I think when she has accepted it and made peace with herself she will talk about it. There will probably be a lot of tears and why Me? Just be there for her to hug her and be a shoulder to cry on. I don't know if ALS America has the same Manual for Living with ALS but if not the ALS Society of Canada has it on their website at www.als.ca You can read it online or download and print it. It's about 100 pages so have lots of paper and a spare ink cartridge if you print it. It has a wealth of information on living with ALS for the patient and family. I highly recommend that you at least read it. It's free and it will help explain to you some ways of dealing with this disease. Feel free to ask anything you need to know that you don't find elsewhere. We're not doctors here but we have a lot of people with quite a bit of experience with this disease. Take care. Al.

 

[Granny]

Hi Melissa,
I am sorry that you have to go through this ALS thing. I have ALS that also started with my speech. It has been two years April 23 since I have been diagnosed. I am still walking and using my hands, but my left hand is getting weaker.
When I was first diagnosed I did not want to talk about it, and definately did not want to look at the ALS manual or any other stuff about ALS. But, after a little while, things got better and now I will talk to anyone about it, read the manual and other information and visit this forum several times a day. Your mother just needs time to let it sink in. You sound like a loving, caring daughter which is very important to your mother.
Maybe the second opinion will be that it is not ALS..wonderful, but if it is then this is a good place to get information, and talk to people that can relate to what you are going through.
Hugs and prayers, Leah

 

[Barbie4]

Mellissa

Hi Mellissa:

I am sorry you are going through all of this. I know how you feel and am in kind of the same boat you are in at the moment, but with my friend not my mother.
I was given some great advice recently from a person who's husband had ALS. She said to let my friend lead the way. I thought that made alot of sense. I am trying to educate myself on ALS and am trying to teach myself how to cope as well. I am going to try and let her lead the way, sometimes it is hard, but many people on this forum, say it will get easier as time passes. There is no doubt about it, this is difficult for the person with ALS especially, but for all of the friends and family around as well.
Stay strong and hug her as much as you can.

Leah, thanks for the reassuring words. You are always so helpful.

Barb

 

[Melissa in Texas]

Thank you.

Thank you Al, Leah and Barb. I appreciate your kind words and advice.

I told my mom when she first got the diagnosis that she was in charge and we would follow her lead. As hard as it is to wait, I believe you are all correct in that she needs to do this in her time.

I will continue to read and learn and try to be as prepared as possible for when she is ready. In the mean time, if you don't mind, I will update you on our progress and probably ask for more advice down the road.

Thank you all again. Please know that when I hope and wish for good things for my mom, I will do the same for everyone who is dealing with this disease.

All my best,

Melissa

 

[Al]

We're all in this together. Safety and security in numbers. We don't need thousands of members. Just members that care about each other and can be on a first name basis and not afraid to express their true feelings. Some of the larger forums you are just an obscure name or a number and as some have tried to say recently we are doomed to failure. We might be doomed because of this disease but We're not going out without a fight and a helping hand for our FRIENDS. As long as I'm alive I'll be here to help. I helped people for 33 years on the job and I'm not quitting. I'm retired not dead and here to stay. So get used to my strange little quirks. They may be there but sometimes they can be quite charming I'm told.

 

[Patty's girl]

I feel for you, Melissa

Dear Melissa,
My mom, too was diagnosed with PBP ALS in the last year. I appreciate your reaching out and expressing what you feel, because I have been going through the same situation. I live in Michigan and my mother is in Nevada. Being so far away has been a challenge, but I seem to instinctly know what it is that she is trying to communicate and feel very honored whenever I can provide for her whatever it is that will support her to maintain her independence. Thanks for sharing.
Patty's Girl

 

[Leslie]

My Dad diagnosed with bulbar, june 2005

Dear Melissa,

My dad was diagnosed last June with ALS- he will be 60 on May 22. The first month we all were like zombies, not sure what to do or where to turn. My dad was extremely depressed and anxious- which was obvioulsy normal. After we got with an excellent doctor at an ALS clinic we all felt a sense of hope. Not a hope that there would be a miracle cure but that my dad would be taken care of and the rest of his life we would be able to maximze his quality of life, the best we could.

I found a couple of excellent books that seem to give straight forward, medical (clinical) information about the disease process. The first is "Amyotrophic Lateral Sclerosis" by Robert G Miller, Deborah Gaines, & Patricia O'Connor- this one is published by the American Academy of Neurology; the other book is "Amyotrophic Lateral Sclerosis: A Guide for Pateints and FAmilies" by Hiroshi Mitsumoto & Theodore L Munsat. I am not soloiciting these books but just sharing information that helped me understand the disease. At first I searched the internet extensively and was overwhelmed with information. I followed up on every theory out there- from pulling all your teeth out that have amalgum fillings to colonic cleansings to the "non-toxic" diets, and of course stem cell therpy! I ran all of these "therapies" by my dad's doctor and he gently told me every time that none of them were proven and would most likely be a waste of our (precoius!) time. I am a veterinarian and even though I have an extensive medical background I was wanting to find ANYTHING to help my dad- whether it made logical sense or not. After all my searching I came to the realization that at this point in time there is no cure but only maximizing my dad's happiness and helping ease his symptoms.

It took my dad a few months to get settled with his diagnosis but after an adjustment period he did address his estate planning, health care plan, etc. From my expereince so far I can tell you that everyone deals with this disease differently. There seems to be an "ebb and flow". There will be times where you can talk about it frankly and then there are times when it is just too much to talk about. The advice I can give is that most likely your mom will come to deal with those issues- it might just take a little time.

I know I have rambled but I KNOW what you are going through. I was so overwhelmed in the beginning (and still am at times now!), I think it helps to have others in the same boat- helping to navigate these unfamiliar waters!

I will be glad to share more of my experiences if you want.

Take care, Leslie

 

[Al]

We're all here to share Leslie. We are all different but in so many ways similar, that what works for one might work for others. Feel free to tell us things that you have found to work. None of us have SEEN EVERYTHING so we just keep looking for what ever comes our way from other PALS and CALS. Take care.

 

[Melissa in Texas]

Hello, Patty's Girl,

I too am in a different city than my mom and desparately wish I could drop everything to be with her everyday. Unfortunately, that is not possible. Thank you for sharing your story. I am still trying to cope with the diagnosis, as is my mom. We just have to do the best we can and deal with whatever comes our way.

Hang in there.

Melissa

 

[Melissa in Texas]

Hello Leslie,

I'm sorry about your dad and for what you are going through.

Please forgive me for not responding sooner. I have been spending a lot of time with my mom.

Since I last posted, my mom received her second opinion and the diagnosis was the same, we took a wonderful family trip to the beach, my mom finally got a feeding tube, and she is using an IPPB machine. She is also scheduled to do a sleep study and will get a bi-pap machine soon.

My mom has been trying alternative options such as fundamental medicine and accupuncture. She also has wonderful friends who provide her with massages.

I don't know how I feel about the fundamental medicine treatments. They seem to be really hard for her. When she had her amalgams removed and received her first chelation (sp?) treatment, it really set her back. She was so weak. She has also purchased many supplements that she painstakingly tries to swallow every morning. She wants to do another chelation treatment but hasn't fully recovered from the insertion of her feeding tube (which she hates). I guess she has to do what is right for her and I can't honestly say what I would or would not do in her shoes.

Have you noticed that this disease seems to only affect kind, caring, giving, loving, nice people who seem to have kind, caring, giving, loving, nice families and friends?

I wish you the best,

Melissa

 

[gilly]

best advice yet...

hello everyone.

i've been reading these postings and this thread in particular made more sense to me than anything. when i found out my aunt has bulbar ALS, i was shocked, sad, scared, devestated... the whole thing. i've spent the last two weeks calling her, sending things to her and searching on the internet. i feel like i need to tell her everything i know now! i want her to join this forum. i want her to go out and have fun. i want her to read more and learn more and understand what she needs to do to stay as strong as possible. but what i've just read has given me a huge sense of relief. you're right that it is our job to let the person with ALS lead the way and when they are ready, if they are ready, however they feel ready to deal with their diagnosis... we are here to support and love. i will never stop supporting her or loving her or helping in anyway i can. but knowing that it is not my job to educate her on everything feels "freeing". she's got the doc. appts set up and she's going to a therapist for her anxiety over all this. she's taking the steps she sees fit for now.

the one thing i do want to tell her (but can't) is that she should plan something for when she can't speak anymore. like record her voice saying things like "i love you" "i'm hungry" etc. or come up with some other ideas. do you think i should back off and let her figure that out on her own?

ugh!

hold on...
nicole

 

[ljtaylor]

Hi Nicole,

I have had ALS since 2002 and diagnosed in 2003. I am new to this site and am happy to have found it. I have felt my voice leaving me for some time now. When your aunt gets to this stage she should be examined by a speech therapist. They can reccomend different devices. The one I am using is made by dynavox and will talk for you. It is a computerized voice but has a place for personally recorded messages to family etc. Your aunt should know about this. Some people need it sooner and some later. There are different brands out here. I am thankful I will have it when i need it. You are wonderful to be supportive. Your unt would benefit from an als support group.

good luck'
Lois `

 

[gilly]

thank you

hi lois.

thank you so much for the info on the dynavox. i have been worried more about the speech problem for her than anything else. i am so scared to think of a day when my aunt can't communicate with us but i love knowing that there are ways to address that. she will be going to a speech therapist next week actually so i will let them tell her about it - or if not, i will wait till she's ready to talk about things like that. the diagnosis is only about a month so far for her and i don't think she wants to talk or know a thing about ALS. she's scared. and i am too. we all are but i find a lot of comfort knowing i at least have this site to ask questions and get a little encouragement. it's wonderful. i hope you have a wonderful day. and thank you for your response.

take care!

nicole