Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)

Heidi passed away 3-25-13 :(

August 4, 2013

Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.

Thursday, December 27, 2012

Let's Talk

Communication keeps families, friends, colleagues and societies together. Not only societies but the world.
This is going to be about communication and the person with ALS(PALS)and/or speech impaired , but first I must talk about how small the world is now with communication through social media .
If you go to the bottom of my blog there is a map of the world. CLICK ON it and see where the people are from in this world that have read this blog! I must say it's pretty amazing how small the world is. I would love to see my blog make it around the globe, please pass it on especially if you know someone with ALS. When I was diagnosed I would have loved to talk to others in a similar situation .
There are a few stages that a PAL (person with ALS) may go through and there are
devices and software that can accommodate. If you don't have the use of your arms but still have a voice, there is software that will turn your speech into text. I am partial to Dragon. The smart phones that have Siri make it very easy for this demographic to stay connected. . Add a bluetooth ear device and you are ready to rock.
Now let's say the PALS diaphragm has been affected . That means that you are not getting enough air to sleep well, or enough air to eat a full meal or speak a whole sentence In the interim you can use a Bi-Pap system, it's non-invasive and can definitely aide you in your breathing.It's not the most attractive piece of equipment, kind of like a scuba mask but you get over it quickly when the alternative is no air. At this point you should be looking into the DPS procedure. This supplements the Bi-Pap system and it will prolong or negate the need for a more invasive procedure (see 8/25/12 To Breathe or not to Breathe, )

This was not available to me when I needed it.
I lasted with the Bi-Pap for 5 months until it eventually was not enough. My doctor said it was better to get a tracheostomy sooner then needed , to avoid a critical situation. Once I got the traceostomy the respiratory therapist taught me how to talk with a Passy-Muir valve. This little device goes in the circuit (the tubing that attaches you to the vent) . It allows air to be re-directed through the vocal folds, mouth and nose for better communication. To learn more visit www.Passy-Muir.com. The Passy-Muir valve and a 8x10 laminated alphabet board were my new means of communication . The Passy-Muir valve works as long as your tongue and mouth continue to work.
The alphabet board is an interesting gift from the hospital .EVERYONE has a different way of doing it and it takes A LOT of patience . Below is a picture of it. Some like me to blink when on the correct row and then blink again when on the right letter. Some prefer I raise my eyebrows. MY MOTHER PREFERS TO GO LETTER BY LETTER. Some insist I condense what I want into 1 word. Others get lost if it's more then 4 words. Great laughs happen when there is a language barrier. Rosa, a night caregiver of Hispanic origins, we have had some entertaining conversations. I prefer if people repeat what I say so there is no mis-communication. ENTERTAINING and FRUSTRATING, I give my hat off to those that attempt.

The Dreaded Alphabet Board
The alphabet board can be a lifesaver if you don't have a voice. But if you are anything like me, it's not enough. I like to talk and not in 1-word answers , not everything is a "yes" or "no"answer. That reminds me, we have established a blink system ,1 means yes and 2 means no, 3 means "I don't know " and multiple blinks means "STOP what you are doing NOW". Of course 3 and multiple blinks have not really caught on yet.

Now I have an augmented speaking device is necessary. I have a computer with Windows XP and it has an Eye Response System. It is called ERICA . It allows me to speak, write, all Microsoft Programs, and all Intuit Programs. Quicken, Turbo Tax and Internet. It enables me to talk to you, my family and anyone who cares to listen. I am also able to maintain the family expenses, prepare budgets and do our taxes, I am able to stay connected,. IF I didn't have this, it would make life a lot more difficult and frustrating. The computer I have just got bought by Dynavox. They are the major player in this field. I have had my ERICA for almost 5 years and it acts up a little so I just got a Dynavox a few weeks ago. (thank you Medicare and insurance). It has a bed pole but it also goes on my chair. I had to have it before my daughter's graduation. It was critical that I have a voice when we travel to see her. Dynavox has an Eyemax System that attaches to the bottom of the computer. It calibrates to both eyes, where the ERICA calibrates to 1 eye. Yes, I talk with my eyes, pretty cool.
Right now I can talk on it but it will take some time before I get everything transferred from 1 to the other. Once I have that done I can give the ERICA to someone that cannot qualify for one. Did you know that people in a skilled facility have difficulty qualifying for a computer because of the high cost for care? I cannot imagine not having this equipment.
So there is something for every stage.
I have some work to do. I feel so blessed that I have this device. It is a wonderful gift.
That's all for now , I hope this has been helpful.
Next post is about our trip North for Ashton's graduation.

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