Trying to cope

[QsMom]

My mom is awaiting her diagnosis; we find out next week however, her specialist seems to think all of her symptoms are pointing to ALS. This has been a rough year for us; my fiance's father passed away about a week after the birth of our first son, my dad just died a month and a half ago, and now this.

I do have to say that coping with this news seems to be the most challenging. I was not very familiar with this disease until now; it seems like ALS is torture and a tragic way to live the last years of your life. I can't imagine my mom losing all of her physical capabilities, including speech, but still being of sane mind. She is only 62, how does this happen? At least my dad had Dimentia; he wasn't mentally aware of how bad of shape he was in; ironic how that now seems like a blessing now.

I am finding myself extremely sad and angry right now. I just have moments where I can't stop crying; if I feel that way, how can she be feeling? Also, to make matters worse, I live in Florida and she lives in Kentucky; what am I going to do when she can no longer speak to me? I have a job and a family here, and very little vacation time left; but I don't want miss out on the final good moments of my mom's life. I feel so sad and lonely.

 

[julez]

Hi QsMom,

my mom was diagnosed last month. I went through the same thing as you...having moments where you can't stop crying. It will pass, trust me. Well it will never completely pass, but at a point, you can stop crying. My mom is just about the same age as your mom, and I have always thought wouldn't it be better to have a disease where your mind goes with your physical abilities so you do not realize what is happening to you....but hopefully she we all can see the brighter side of this...that at least our moms is still there to enjoy the sunrise, still there to realize how much her family loves her, etc.

have you considered moving her down? Considering the fact that your father just passed a year? She will need a full time caregiver at some point. My mom has not bee able to speak for a good solid half year now, but her voice started going away about a year ago. now she communicates by email. At some point, we will probably invest in some of those nifty gadgets like that dynavox.

but if there is any way you can bring her down, I honestly would suggest it. mom here has myself and dad, but unfortunately we work full time. her family is mostly in wisconsin, and you can see how happy she is when she has her family around her...too bad they cant' stay here forever. you are in my thoughts and prayers.

kim

 

[QsMom]

Thank you Kim. Actually, my mom and dad were divorced. She is not alone though, she lives with her boyfriend of 25 years and all of her brothers and sisters are there in KY. She would never leave them to come here.

My mom just had major surgery about a year ago, they removed cancer from her lung. The surgery went ok but the recovery was bad; she apparently had some sort of leak and blew up like a balloon (I had never seen anything like that)! After that surgery, she has never been the same. We all thought that it was just recovery from the stress on her body. For the last 5 months she has been complaining that she knows something is majorly wrong; she thought she had had a stroke or something. Her speech is very slurred and she drools alot. Now we know she was right about something being wrong.

Is there any way to recognize how far along they are? How long was it before your mom completely lost her voice? What is a dynavox? Does your mom still have full mobility of her body? Are there parts of this that always happen first (like the voice, the arms, etc)? I am just trying to wrap my arms around this.

 

[fishing890]

Hi QsMom,

basically mom had started losing her voice sometime may 2008. after many doctors, all seem to agree that she had severe acid reflux that was affecting her speech (acid going up to her throat). her voice eventually gave way probably sometime oct or nov 08. she underwent major surgery jan 09 in order to wrap her esophagus around the stomach to stop the acid. prior to the surgery, she could eat solids but she could not talk (no one could understand her). supposedly up to 3 months later, she should have gotten her voice back. 3 months down, she could not swallow any solids and she was constantly drooling and spitting into a napkin and in May 09, a doctor FINALLY figured out something was wrong and referred her to a neurologist and she was finally diagnosed May 09. it has been a long road since then.

basically, she has bulbar onset, which affects your face first. she still currently has full mobility which i hope she will never lose. but the nature of the disease is that it spreads. bulbar onset, from what i have learned reading here, only affects about 25%. the rest generally has limb onset, where it hits either your legs or arms first, and it spreads from there. how far has she progressed? im not sure. she is going back to testing at an ALS center for 3 days and i am guessing well have a bit more information then. she probably will need to get a peg feeding tube soon and go on bipap (breathing device) for when she goes to sleep.

dynavox is a sophisticated speaking device which, at the point that you are completely immobile, you can still use the device to speak based on your gazes at letters on the screen (something like that...ive never really seen one). right now since she is still mobile we have not really looked too much into it, but if needed we will.

spend sometime reading this forum and reading what you can find on the internet. you will learn a lot and will eventually become an expert in a short time!

kim

 

[julez]

sorry! i accidently replied in my dads log in. but it was me replying.

kim

 

[BarryG]

Hi Kim and QsMom, both your moms should have a communication device like a dynavox right away now if they can't talk. DynaVox is the brand name and the company makes several models of device depending on the ability of the user. I have a DynaVox Palmtop3 which is a very small hand-held device which can be programmed to speak phrases and I can also use a small stylus to type in what I want to say. On the other end of the scale they also make devices that can be operated by users with no use of their hands, check out their website (just google DynaVox). I am now using a netbook computer with speaking software because it is easier for me to type on an almost full-size keyboard and it only cost about $500 (a lot cheaper than DynaVox).

I was diagnosed with bulbar onset ALS in January of 2008 and my symptoms have progressed from slurred speech to unintelligible speech and great difficulty in eating anything by mouth. I had a peg tube placed in February and pretty much all of my nutrition goes in that way.

And you're right, 75% of ALS is limb onset and 25% bulbar. The usual progression for bulbar is speech and swallowing first and then it progresses to the limbs and breathing and it is the opposite for limb onset, limbs first and then progressing to bulbar and breathing. In the end we all end up the same, just from different directiions.

All the best to you both and if you have any questions just ask. There a bunch of us bulbar types on here and we'll be happy to try to answer any questions that you have.

Barry

 

[QsMom]

Thank You

Hi Kim and Barry:

Well, it sounds like my mother would be in the bulbar set as well as she is still fully mobil but just struggles with her speech. Actually Kim, sounds like she is on the same trail as your mother.

Thanks for the advice Barry, I spent all day yesterday researching the dynavox and I have to say, it was a relief to see that there are tools provided that will assist people with this horrible disease through almost every phase. I do have two questions though:

1. as you said, they are very expensive; does Medicare or Medicaid provide any assistance with paying and

2. my mother was a stay at home mom, I don't know if she ever really typed but I do know that her spelling isn't the best in the world, would that affect this program with the speaking software?

I truly appreciate both of you for responding to me; I am defintetly finding that the more I educate myself the less scary this seems. I am still praying for a miracle and that her results next week will show negative for ALS however, if it does come back positive, at least I am armed with a good support network and more tools to assist my mother in her journey of battling this illness!

Thank You and God Bless!

 

[QsMom]

Oh Yes, Barry, one more question for you. I was thinking about flying my mother and her boyfriend out to Florida for a little vacation. I know that my mom is on oxygen right now as well; do you think flying and traveling would be possible for her? I would love to get her out here to enjoy some family and sun while she is still able to do so but I am not sure if the trip would be too much for her from KY; what do you think?

 

[BarryG]

Hi QsMom, I am sorry but because I am in Canada I can't comment on the Medicare/Medicaid question but I know that there are number of forum members that can answer. As far as typing and spelling goes it helps if you are good at it but not absolutely necessary. All of the devices and programs have a spell checking function and can be programmed to speak common phrases with the push of one button. I don't know if your mom is attending an ALS clinic but if it is possible she should as they usually have speech language pathologists (SLP) that can help to not only select the appropriate device but can also help with other communication and swallowing strategies.

Travelling is another sticky issue. I recently decided not to make a long trip to eastern Canada because I didn't want to deal with airports, security, lineups and all that stuff. I love flying but detest airports and all that they have become in the last 10 years. There are others on the forum who have asked the same question recently and my answer is that, while it takes longer, I would rather drive as it is easier for me to take my "stuff" without the hassle of trying to pack it or explain it to an underpaid, undereducated and overworked security officer. But that is just me, If your mom can make the trip and has help then she should make the trip because there is nothing like visiting family. I would love to visit Florida, I was there about 25 years ago and have a lot of great memories of DisneyWorld, Epcot Centre, Cape Canaveral and Key West! I don't know about travelling with oxygen and I hope that some other knowledgeable member can answer that one.

 

[julez]

Qs, I asked the same question about travel just recently....here is the thread

https://www.alsforums.com/forum/showthread.php?t=8704

 

[brooksea]

Q-

Medicare will pay for 80% of a device. BUT- only once. So you better be sure on the choice of device. This goes for power wheelchair too! The MDA will help with the balance not paid.

Also, be careful if she chooses a Medicare Advantage plan. There are some that have lowered the amount they will pay for dme from 80% to 70%. She needs to be aware of that when choosing a plan.

 

[mare]

Good tip, CJ; wasn't aware of that!

 

[thelma313]

my mother was a stay at home mom, I don't know if she ever really typed but I do know that her spelling isn't the best in the world, would that affect this program with the speaking software?

Hi QsMom,

My Dad also has bulbar onset but the ALS spread to his limbs pretty early on. He now has great difficulty walking even with the use of his orthotics and cane. Also his hands have lost significant muscle mass and some strength although he is still able to write, do his Sudoku puzzles and most importantly operate his brand new Dynavox. He opted for the Panasonic Toughbook (I think he was drawn to the name!) Like your mom, my father never really touched a computer. He had never so much as turned one on! Seriously he is a true luddite but you should see him now! He loves his Dynavox. It is very easy to use and you can pre-program countless phrases. I never expected him to be so enthusiastic about it. We are all so proud of him. I hope your Mom finds the same enjoyment as my Dad has. You can reassure her. If my Dad could master it so can she.

All the best to you and your family.

 

[QsMom]

UPDATE:

Well, my mom was officially diagnosed on July 1st. I have to say that I am very proud of her as she is demanding a 2nd opinon; as much as I love my mother, she has never been a fighter, but I am so amazed at her strength right now (and I tell her every day)!

I am pretty much over my being "pissed off at the world" phase. I still get sad when I think of the journey that lies ahead for her however, this site has definitely served as such an inspiration! I am constantly comforted and in awe when I see the courage displayed by both people diagnosed with this horrific disease and family members that are caretaking for them.

The one thing that I think we ALL share is HOPE and for that hope, we must have a certain amount of "faith" that we are going to find a cure! I definitely realize now that having faith in such times that seem like hope doesn't exist is challenging however, ironically, I think that is the entire definition of having "faith."

I truly appreciate all of the information and support I have received on this site and will continue to search here for any new info or inspirational stories that people want to share (as well as share our journey as a family).

Sincerely,

Tanya

 

[hopingforcure]

Tanya,
How special a message, so sorry about the diagnosed. but good for her getting a second opinion. I only hope we can be some light in this dark disease.. We are a family first here.