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.

Thanksgiving Thanks

Thanksgiving is a Holiday close to my heart. Growing up is was a feast prepared by my grandmother and my dad. It was  a time when the Good Clan would gather at Grandma's Ranch out in Newhall/Saugus area. All of my cousins came, we played cards, hunt for anything living in the creek, have tetherball competitions and just hang out.  I was the youngest and a real pest to my older cousins. Always wanting to be a part of everything. Once they tied me to a tree just to get me out of the way. Of course I was always made to sit at the kids table with a few cousins that felt sorry for me.  The feast was never ending and after most retreated to the couches to moan and groan from eating too much and then fall asleep. The non-cooks would clean up. I would go lay on the front lawn and watch the bats come out at dusk to eat the gnats. Sometimes they would come pretty close to me but it was always an amazing show.

Have you noticed that their are 1 or 2 people that keep the family together at Thanksgiving? When Grandma died my dad kept it up. He and his wife Adrianne would have at least 30 people come to their Thanksgiving feast.  The cacophony in the kitchen was alive, with everyone helping. The naps after were the tradition. The people would change. My cousins mostly had families of their own and would make their own traditions. But my dad's table was always full. I finally was big enough where I didn't have to sit at the kid's table anymore. When my dad died, the large gatherings of the Good clan died too. He was the force that brought us together, as was his mother before him.

It was time for Steve and I to make our own traditions. I didn't think Thanksgiving was Thanksgiving without a large group of people. So we tried making it a travel holiday. That lasted until we had kids. We would invite others to join us but I was never able to recapture the Thanksgiving of my youth. I guess that's part of growing up.
Now we look forward to Thanksgiving with just our immediate family. We cook enough for 20 and offer our table to others but if it's just us, it's ok. We don't see Ashton very much so that's always a treat and Chris is usually hangin' with his buds. Every minute we get with them is a treasure and we are very very thankful. With my mom being 86, my ALS and the kids off in making  their own lives, time together is a true blessing.

Today my family and  I would like to give thanks to so many that have helped so much during this difficult time. The Meal Angels, the Inner Circle ,the ALS Guardian Angels, Ride for Life, Lucas & Lewellen Vineyards, the owners of Barwest in Sacramento, my sisters and classmates from Dana Hall, Facebook, Stewart Fries and the Viking Charities. The letters of support and the generosity of friends and strangers has been overwhelming. We don't know the latest tally yet but we know about 4 months of caregiving costs has been raised.

We are truly thankful.

Please circulate this blog to everyone you know. ALS Awareness is the beginning of  a cure. More money is being poured into research and more creative ideas are hitting the headlines. In the 8 years I have had ALS, this past year has been a banner year on findings. All of this WILL lead to a cure. If you would like more information on current research please go to www. ALSA.org.

Thank you for reading, caring and praying.
Here is a picture of my beautiful family, it's a little outdated,2009. Hopefully a new one will be posted if we can get out of our PJ's!

 

Have a wonderful Thanksgiving. . . .

Veteran's Day

Thank you for using The ALS Association Mail System.

Message sent to the following recipients:
Nuestra Gente Magazine
San Luis Obispo Tribune
Santa Barbara Independent
Santa Barbara News-Press
Santa Maria Times
Message text follows:

Heidi Good
380 Midten Hof
solvang, CA 93463-2962


November 9, 2012

[recipient address was inserted here]


Dear [recipient name was inserted here],

A few weeks ago, studies found that NFL players are at greater risk of ALS (Lou Gehrig's disease).  Papers like this one ran stories about the news and rightfully so. But with Veterans Day approaching on Sunday November 11, how many of us know that a much, much larger segment of our population
- military veterans - also is at greater risk of Lou Gehrig's Disease?  

Studies have shown that military veterans are about twice as likely to die from ALS as the general public. It does not matter when or where they served in the military - home or abroad, during a time of peace or war, from World War I to Afghanistan.  Unfortunately, for these heroes and everyone else in the world who is living with ALS, there is no treatment.
There is no cure.  They will die from the disease in an average of just two to five years.

We do not know what causes ALS in veterans or NFL players. Is it head trauma?  Excessive physical activity?  Those are potential risk factors.
But we do know that raising awareness of the risk faced by our veterans not only can let these heroes know about the significant VA benefits that are available, but also help us to find the cause treatment and cure for this horrific disease.

Just as the media published stories about the greater risk faced by NFL players, so too should they report the risks faced by our military heroes who have fought for and defended our nation.

I encourage your readers to visit the Wall of Honor at www.alsa.org.
There, people can read the stories and see the faces of hundreds of veterans living with ALS and those who already have been lost to the disease.  There, they can see that ALS does not simply strike the stars we watch on TV every Sunday, but also our family members, friends and neighbors who have served in the military - our heroes.

Sincerely,


Heidi Good

Happy Anniversary - What's Next?

Dear Family and Friends,

As I approach my 8th anniversary since when my ALS symptoms started,I reflect on all the wonderful things that have happened. I am still here, which is a miracle in itself! I am grateful for this anniversary knowing that the textbook life expectancy for ALS is only three to five years. I am confident that this extended time is due to the exceptional care I have received ( see 10/12/12 post) and modern technology. I want to describe briefly a few examples out of the many blessings and miracles I have experienced during this time. I often sit with my husband Steve while he eats a delivered dinner. I can hear his delight as he enjoys every bite of his meal which has been provided to us by others. Listening to Steve and Chris discuss their favorite parts of the meal brings me great joy. These Meal Angels(see 1/18/12) have been delivering meals for over 4 years. Faithful and true , these families have given a sense of normalcy to our family. This is such a blessing since our lives are anything but "normal". A hot meal at the end of the day is an incredible tension reducer for us all.

The valley in which we live is a very tight community. The churches have me on their prayer chains,regardless of their denomination. My doctors in this County all seem to keep each other informed of my progress which is very reassuring. So, as you can see,my family and I have a lot of support. I believe our residence here in this wonderful community is anything but accidental.

As many people do, I wrestle continually with the question of my purpose here on this earth. What is the ultimate reason for the rest of my life? There are countless times the Lord could have brought me Home, but I am still here. There must be a reason. In addition to giving unconditional love to my husband , kids, family and friends, I have been counseling newly diagnosed people with ALS, which has been very rewarding. Without the use of my arms and legs, the ALS has left me with my eyes, smile, brain and the use of my augmented speaking device. I have an overwhelming desire to advocate for the many people, who like me, have restricted movement and are hindered by the minimal benefits that Medicare provides. Currently Medicare only provides intermittent help when the urgent need for the patient and family is "around the clock" assistance The caregiving that provides this intermittent care must be provided by an authorized health care agency and such care is far too expensive for almost every patient and their affected families.

What are families to do ? I suppose they do something like my family is doing. They empty their retirement and college funds, sell valuables and luxury items and max out the equity in their home. Since my present longevity was unexpected,we have come to a point where we have nothing left to sell . No accounts left to drain.

We are profoundly grateful for the extra time we have been given together. I have been privileged to live long enough to see my daughter Ashton graduate from high school. This December I hope to go to her graduation from college and next year I plan to see my son Chris graduate from high school. Since the diagnosis of ALS I never thought I would celebrate our 25th wedding anniversary, we just celebrated our 26th. I never thought I would see 50, that was 2 years ago. In these last 8 years my life has been blessed in ways beyond what I ever could have anticipated . I am glad I have been allowed to stay in this life. This experience has been profoundly humbling . It has also been inexpressibly rewarding and fulfilling.

Many of you have asked "How can I help? ". Thank you! The Viking Charities has accepted me as one of their own charities. This is an unexpected gift. If you would like, and are able, to help us with my caregiving needs, you can make a tax deductible contribution to:

Viking Charities , Inc.
P.O. Box 293
Solvang, CA 93464
Payable to: Viking Charities - Heidi Good Fund


You will receive a thank you note with the necessary tax information. The contribution will be placed in an account with my name on it and the Vikings will directly pay my medical expenses. My caregiving costs $100,000.00 a year (and that includes the unpaid hours put in by my mom and Steve ) , which is 100% out of pocket. If you are unable to help in that way please keep us in your thoughts and prayers. Your continued friendship is the best blessing of all.

With love and appreciation,

Heidi Good

Meet the Caregivers

I don't feel well. MBattleship, excellent movie. THEN the weekend continues with Still Steve as the daytime caregiver. AS you can see. , are a team and it amazes me every day the love, patience, Grace and caring these women show me; no matter what. I could be down, frustrated or angry and they are there for me, wiping my tears and making sure I know they care and they love me. These women are strong in their convictions , their faith and their opinions. I trust each one with my life, I have to. That was a very humbling hurdle for me. Each woman brings something unique to the team which makes us one heck of a unit. I have been known to be a little controlling so sometimes there are sparks. Like sisters we get through it with as much grace and mercy that we can and always with love. So ladies , if you are reading this. . . . . I love you, respect you and appreciate you. My heart is filled with thanks. Wanda

Wanda and I met through a mutual friend, Sandy. I was still working with Lucas and Lewellen Vineyards but had moved my office to my home. I was still able to move a little and was using a walker. I was still able to talk. My husband, Steve suggested I get someone that can help me with my physical therapy and be with me as I adapt to the changes I would be experiencing. (Always thinking ahead ) . Wanda and I met and there was an instant connection. She had worked with people for 25 years, from caregiving, hospitals, nanny, teaching and the movie industry. I was her first person with ALS(PALS) but she had plenty of experience with physically challenged. She started out part time and as I adapted to the progression , so did she. She worked days and some nights, to give Steve a rest. As the ALS took over, I needed to be turned at night every few hours, to prevent bed sores. She has been by my side for 51/2 years. Her spiritual and encouraging words are uplifting and positive. We have both grown so much during this, through hospitalization, losing the ability to breathe, to talk , to move. She has mastered all of the equipment and I rely on her expertise for everything. When we go to see a doctor, they ALWAYS say how lucky I am to be with her. I am truly blessed to have a friend like her . Wanda has blessed my life with her caring, empathy and patience. Oh yes, and she got me addicted the the daytime soap, The Young and the RESTLESS : )

Sherrie - When you have a tracheotomy you are not allowed to leave the hospital unless medical personnel are set up at home. Their responsibility is to train the family and other caregivers on the machinery and how to treat the patient. Through the home agency I used I met many wonderful people. One in particular, Sherrie, not only worked with the staff but also became one of my night caregivers. She is an RN and a FNP (Family Nurse Practitioner)so she has a lot of medical knowledge, which was very helpful with all the new machinery. More then that Sherrie and I have become great friends She is a very spiritual woman, a solid Christian. She has helped me explore and expand my walk with God. She says that God put her here for a specific purpose. Sherrie and I just had our 4 year anniversary.Time flies. I feel very blessed to have her as a part of our team.

Annie - she is my Earth mother, very spiritual, believer in a holistic life, very one with the universe. Always a positive attitude and she believes we are put on this earth to help others. We met through Wanda, Annie was taking care of a gentleman confined to a wheelchair. Annie and I have been together for over 2 years. She works nights and fills in for Wanda if she takes a day off. We like the same tv shows and are both obsessed with cooking, recipes and cooking shows. Her care and concern for my well being is very genuine, .

Steve is my primary caregiver and he has the toughest job of all. He commutes to SB every day, works 50+ hours/week and then comes home to take care of me. On Fridays I call it our date night. Steve takes the night shift and we watch a movie.Battleship was last night and we both highly recommend it. He is the one I want with me if things aren't going well or a if I don't feel well. HE is my earthly rock. A remarkable man.

Left to Right : Katie,Cousin Carol, Rosa, my mom Rosa and Katie: These women have moved on in life to other work but they were instrumental in my good health. Rosa is very maternal, motherly. If I wasn't feeling well, or just having a rough day, she would wipe tears an offer motherly advice. I cried on her shoulder many a night. Rosa was also recruited by Wanda to work nights. She is a very quick learner. Annie took over Rosa's shifts. She is Hispanic and communication sometimes got comical, especially when we used the Letter Board but we always made it through . Katie is a sweetie that was just launching her career as a RN. She reminded me of Ashton and I enjoyed watching her go through the process of growing up. Katie joined our team through an agency , she worked primarily on the weekend . I think I re-lived some of my youth through her. She learned a lot when she was here and I hope her practical experience helps her in her new job at the Santa Barbara hospital. I was able to watch her fall in love and get married. I am truly thankful for that blessing. )

Last but certainly not least - MOM. My mom is 86 and has the spirit of 40 and the energy of 60. She gets a daily report from each caregiver, keeps the house in order, helps with Chris and sits with me between shifts. She is Wanda's wing man when we go on outings. It's difficult to live with your mother, most difficult for Steve. But we make it through. It's nice to have her here. : .

Something that I feel strongly about

A few weeks ago one of my dearest friends email'd with questions about God's selection process. Why  do so many evil and unhappy  people live?  While so many young, contributing, happy and faithful people die?  As she said, "it's so random ". It can rock your faith when some are taken from this world and others are left behind.I really didn't know what to say and have been wrestling with it ever since she wrote me. The one thing I didn't want to do was give her a neatly packaged Christian saying. My response would be it's God's plan and even though we don't understand it our faith helps us accept it. This is pretty close to a canned Christian response, even though I believe it with all my heart, to others it may sound like "Christian-Speak".Before I share this devotional with you I would like to share a moment with you. Sherry Hahn-Hicks, a Godly woman about my age and a friend. She was walking with her son and new daughter-in -law in San Francisco. They were hit by a repeat drunk driver. The daughter is still in ICU, the son is well but Sherry is with the Lord. One redeeming factor is the drunk driver was arrested on the spot for vehicular homicide. Please pray for their family and peace.

I received this devotional on 9/13 that talks directly to the issue of what do you say when something terrible happens.This is for you Bonnie.

Lysa TerKeurst

September 13, 2012

Please Don't Give Me a Christian Answer

Lysa TerKeurst 

"The right word at the right time is like golden apples in silver jewelry." Proverbs 25:11 (NIRV)

I love Jesus. I love God. I love His Truth. I love people.

But I don't love packaged Christian answers. Those that tie everything up in a nice neat bow. And make life a little too tidy.

Because there just isn't anything tidy about some things that happen in our broken world. The shooting that recently happened in Aurora, Colorado, is awful and sad and so incredibly evil.

And God help me if I think I'm going to make things better by thinking up a clever Christian saying to add to all the dialogue. God certainly doesn't need people like me — with limited perspectives, limited understanding, and limited depth — trying to make sense of things that don't make sense.

Is there a place for God's truth in all this? Absolutely. But we must, must, must let God direct us. In His time. In His way. In His love.

And when things are awful we should just say, "This is awful." When things don't make sense, we can't shy away from just saying, "This doesn't make sense." Because there is a difference between a wrong word at the wrong time, and a right word at the right time.

When my sister died a horribly tragic death, it was because a doctor prescribed some medication that no child should ever be given. And it set off a chain of events that eventually found my family standing over a pink rose draped casket.

Weeping.

Hurting.

Needing time to wrestle with grief and anger and loss.

And it infuriated my raw soul when people tried to sweep up the shattered pieces of our life by saying things like, "Well, God just needed another angel in heaven." It took the shards of my grief and twisted them even more deeply into my already broken heart.

I understand why they said things like this. Because they wanted to say something. To make it better. Their compassion compelled them to come close.

And I wanted them there. And then I didn't.

Everything was a contradiction. I could be crying hysterically one minute and laughing the next. And then feel so awful for daring to laugh that I wanted to cuss. And then sing a praise song. I wanted to shake my fist at God and then read His Scriptures for hours.

There's just nothing tidy about all that.

You want to know the best thing someone said to me in the middle of my grief?

I was standing in the midst of all the tears falling down on black dresses and black suits on that grey funeral day. My heels were sinking into the grass. I was staring down at an ant pile. The ants were running like mad around a footprint that had squashed their home.

I was wondering if I stood in that pile and let them sting me a million times if maybe that pain would distract me from my soul pain. At least I knew how to soothe physical pain.

Suddenly, this little pigtailed girl skipped by me and exclaimed, "I hate ants."

And that was hands-down the best thing anyone said that day.

Because she just entered in right where I was. Noticed where I was focused in that moment and just said something basic. Normal. Obvious.

Yes, there is a place for a solid Christian answer. Absolutely.

But there's also a place to just weep with no answers at all.

God help us to know the difference.

Dear Lord, thank You for being there in my darkest time. I know You are real and You are the only one who can bring comfort to seemingly impossible situations. Please help me speak Your truth to those around me. In Jesus' Name, Amen.

Reflect and Respond:

Think of someone in your life who is going through a really tough situation. How can you make a difference in their life today?

Instead of words of encouragement, it may involve serving them and making sure their physical needs are met during this difficult time. Allow God to lead you as you try to serve your friend best.

Power Verses:

Romans 12:15-16, "Rejoice with those who rejoice; mourn with those who mourn. Live in harmony with one another." (NIV)

Ecclesiastes 10:12, "The words of a wise person are gracious. The talk of a fool self-destructs." (MSG)

© 2012 by Lysa TerKeurst. All rights reserved.

Proverbs 31 Ministries
616-G Matthews-Mint Hill Road
Matthews, NC 28105
Proverbs31

To Breathe or Not to Breathe

People with ALS (PALS) , at some point  wonder about their mortality,   how the disease will  "take them". Will it be lack of ability to breathe? Or  are other organs going to shut  down? Or a heart attack? It's odd to have a fatal disease but not know how, or when life will end.
That's the natural order, we are not supposed to know.  The fatality of ALS is 100%, but those are the percentages for everyone on this earth.  Psalm 139:  16.  your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.   Our responsibility is live each day with love for one another,   grace and mercy.   Relying on  the knowledge that God has a plan for each one of us and we can trust the plan is good.   That's enough preaching, .

  As a person with ALS, breathing is eventually an issue. The lungs can be healthy and strong but the muscles surrounding the lungs are weakened by the disease. The diaphragm is  the primary organ for breathing,  also weakened by ALS.  If the diaphragm can still respond to some electrical stimulation there  is a  new procedure that will prolong or negate the need for an invasive tracheostomy. The NeuRx Diaphragm Pacing System (DPS) passed FDA approval (9/11) as a  non invasive procedure that will supplement a non-invasive BiPAP breathing system. http://alsn.mda.org/news/neurx-diaphragm-pacing-system-approved-als
 Unfortunately it was not an available option when I  needed it.   When your  lungs/diaphragm are
 strong you are a good candidate for ALS trials. Once they go, you don't qualify for many.  My plan was to   participate in a trial, I was positive that was my purpose, to be part of the solution.       .

My Story:
In late '07 I had my usual appointment at UCLA. It was very uneventful and my lungs were still good, voice still strong. I get my first case of pneumonia.

Halloween '07. I have a tradition of cruising the neighborhood with the kids, checking out the sights, visiting with the neighbors. This was my first year in my wheelchair, with my monster size glass of cabernet and my blinking spider headband, no gloves (stupid). FINGERS WERE FREEZING but I was not going to stop my annual ritual of wine tasting with the neighbors. Within weeks I started with a never ending cold. By January the pneumonia set in and  my breathing was affected. February we realized my breathing was not going to improve. We treated the pneumonia at home with a home health care agency administering iv's. My room had to be freezing for me to be comfortable,  my poor family had to wear gloves and coats in their own home to keep  from getting sick themselves. The family all thought this was the end, I was unable to get a deep breath, unable to sleep because I couldn't get enough air in my  lungs and unable to eat because I could not get enough  breath  to chew. This was the first scare of a few. No air is a scary feeling. Ashton left a soccer  scholarship in Hawaii to come home and be with me. I  was thrilled to have the kids close, but not thrilled about her decision to stay and not go back to Hawaii. When she makes up her mind about something there is no arguing. An ocean is just too far away. But there was  immediate relief   once we knew the right questions. The next step when your breathing weakens is a non-invasive B-pap machine, this is also used for people with sleep apnia. RESPIRONIX is a   good supplier. There are many designs  and you must do trial and error to find one that fits. This method works very very well. Once I started getting air I got better quickly and we were able to warm up the house. With a B-Pap I was able to eat and drink as long as I could open my mouth long enough, and hold my breath,  to  chew and swallow. Diet became very important. I had lost a lot of weight from being sick, that's not good. Wanda and I  became obsessed with getting enough calories in me with the least amount of effort on my part. Food still needed to be organic. I had been eating organic for so long I was not going to add processed food now. We became juicing experts. That was great for a while but my ability to eat was beginning to get harder. Not in drinking or chewing, but holding my breath long enough to get enough food in me.

The time came when we were faced with THE BIG DECISION. To get a feeding tube and tracheotomy? It was recommended that I get the tracheotomy sooner then later. The feeding tube was easy but if we were going to do one, we should do both. The g-tube was done 8/14 and the tracheotomy 8/15.
HAPPY 4TH Anniversary!
I want to share with you some of the trials we have experienced having a trachea put in but I will do that in the next post.

The feeding tube is the best invention ever!   EVERYONE should have one.   No obesity and I don't really miss food.   I still watch Food Network and I don't mind people eating in front of me. Eating is now a no-brainer. The only time I miss a certain food is when it is close to eating time.

That's  enough for tonight. Getting an invasive breathing apparatus is a life changing event,  not to be taken lightly. I have no regrets for doing it, It has prolonged my life 4 years,which I am thankful for.

Things That Crawl in the Night

My Quadriplegic nightmare

 

Ever since a little girl I have been wary of bugs. I love snakes but creepy crawlies, never.

Maybe it was too many Twilight Zone episodes. Tiny 6- legged creatures nesting in my nose or ears has been a key scenario in my terrified, head under the covers nighttime ritual.  If camping, I am the one burrowed down low with the zipper all the way up and the drawstring tight. 

I know that there are many of you that share my squeamishness, whether you admit it or not. Once I lost my mobility, my fear turned into terror. If there was a spider in my room, it was soon to be dead. Sorry, I am not a believer of sparing the lives of creepy crawlies.

Summer of 2010 there was a spider nest in my bedroom. We didn’t know until one night several babies were making their first solo flight down from the ceiling, right over my head. Luckily Steve was here and could see the frantic look on my face, followed my eyes upward and saw the mini-brigade of dive bombers.  He called my son in, because killing things is a guy thing. They assembled their weapons from a golf club and my walking stick and attacked the ceiling. I still have the marks above me to remember that fateful night.

Well, it gets worse. A few weeks ago I had a run in with an earwig. I never thought they could hurt people but I learned otherwise. Half asleep I feel creepy little legs on my cheek.My caregiver is asleep and I don’t want to open my mouth, or move for fear it will walk into my mouth. I feel the body intruder walking across my face.Skinny little legs just cruising along my cheek. If I knew how to close my nose and ears, I would have. Visions of Twilight Zone filled my head. Then the movement stops and I figure it’s going to go away. No,I feel and hear it CHEWING on me. CHEWING!! It seemed forever but was just seconds I imagine. Talk about feeling helpless. So, I just waited until it sated its thirst. Once it was full it walked it’s creepy little legs down my face. I didn’t feel it anywhere else so it must have gone somewhere to digest it’s big meal.  Chewing!!

The next day I awoke with nasty bite marks on my cheek. When Wanda changed my sheets we found the bloated earwig snoozing between the sheets. Boy that sucker did not want to die.  She pinched and pinched, he squirted out a lot of my blood but still didn’t die. The only burial for it was the porcelean flusher, it was going to a watery grave.

Sorry to those of you that believe in preserving ALL life. As a completely dependent, immobile, defenseless human, I will show no mercy to creepy crawlies.

 Zoom in on the sucker

Scars of Proof

Below are the pictures of 

Miracles and More

Hi friends,
I have been working on a post for 2 months and it just ain't coming together. So I decided to set it aside for a bit and share with you some other things that have been going on recently.  Below is a piece I entered into a contest last month. It was to be spiritually based and could be a testimony or story. I did not make the cut but I really enjoyed doing it. There will be more contests. I am anxious for your opinions so don't be shy.

Miracles and More 

Hindsight is 20/20.  An employer said that to me over 15 years ago and it stuck with me.

7 years ago I was diagnosed with ALS, aka Lou Gehrigs. I am 52, a quadriplegic and on life support, I have had time to reflect and see God’s hand directing my life. People say God doesn’t do miracles in modern times. That’s just not true! You have to open your eyes and quiet your mind, you will see them. By the way, I am typing with my eyes, miracle! 

Have you ever had a task or an event you were trying to accomplish and every way you turn you hit a wall, an obstacle? That’s God telling you it’s not His will; time to change course. God wants what’s best for us and He knows before we do. If we don’t obey, He will make us obey!

I have a great family, 2 wonderful kids, a loving husband, but God was not first, more like last. I was in control and I could fix any issue that came my way. I am surprised He didn’t give up on me; never forsaken, just like He promised. God gave me several hints that my priorities were not aligned correctly.

We moved to a small valley north of Santa Barbara when the kids were 4 and 9, for a more wholesome upbringing. As a family we were active in the community. Both kids were enrolled in Christian schools, not because of our faith but it was a better education. This is a faith based community, all faiths. When I got sick the whole community came to help and 7 years later they still are.

God didn’t cause the ALS but He allowed it and He can miraculously cure me but I have some serious refining still to do. The Lord has tested me, changed me, opened my eyes and heart, and He isn’t done yet.

Our friends organized a ministry. The “Meal Angels” are a group of families that bring us dinner twice a week; they have been ministering to us with meals for almost 4 years. My girlfriends come every week to chat and read, these are angels that God placed in my life. Medically the Lord made sure I was surrounded by the best doctors and caregivers. When I started to need help at home He brought me Wanda. A solid Christian woman that has been with me now 5+ years, has journeyed with me, adapting as my body deteriorates. My other caregivers are all very spiritual, surrounding me the Word and the Love of the Lord. The biggest miracle God gave me was my husband. Only He would have known that Steve would be the right man for me in times like we are going through now, 25 years later. He has taken care of us, even financially. Two family members passed and even though we miss them and wish they were still with us, the money they left behind came at a time when we didn’t know how we were going to afford the looming medical expenses. So many miracles! My Lord has a plan, the plan is good and it is not done. Miracles are always happening, whether it is obvious or the subtle transformation of my mother, husband and children coming closer to God. Miracles are alive and well in these modern times. We just need to be quiet, watch and listen. Hindsight is 20/20.

Let's catch up.

It's been waaay too long since I have said Hi. A lot has gone on in 2 months. The highlights are I was sick for about 6 weeks and it turns out I had Diabetes. This was odd to me since I have been on a feeding tube for 3 years. Apparently the old pancreas is getting tired. Fortunately the only thing I had to do was change my food. It took a little bit to find the right food and balance but according to my doctor on Friday, the Diabetes is a "non issue " now, as long as long as my numbers are good.. To the folks who have to test their blood sugar, I feel your pain! the Lord let me dodge that bullet!

I had a great visit from our San Diego cousins, passing through to San Francisco. Bonnie was joined by her mom Roseanne and Bonnie's 2 girls, Molly and Jackie. We visited for a couple hours and it was great to see them. 

Molly, Bonnie, Jackie and Aunt Roseanne 

 Other than that excitement I have finally filed our taxes ..yay. Behind schedule because I felt so lousy for so long, but it's done. It was my Mother's Day gift to myself. Oh, big news...I had a birthday. What's so big about that, you say?  Well my friends threw me a "Hen Party" (no men). I knew something was happening but I had NO idea who was coming to this shin dig. It was really fantastic to see  about 15 of my girlfriends there, full of laughs and teasing. It was such a wonderful surprise and the perfect gift. Talk about feeling loved. We enjoyed cupcakes and a delicious punch that looked kind of funny(sorry Susan). What a group of friends!!



The Hen Party 

 The kids are doing great. Ashton is finishing finals, only 1 more semester to go and she will graduate with her education degree, specialty in Special Needs. This summer she will be working with a River Rafting company and still do table service at a very "happening" place. How fun is that! Ah, to be in your 20's again. Chris is getting ready for finals. Counting the days for school to end! He has a job through my friend Janis that has been great for him. It's flexible and Janis' husband is a window installer/handyman. Chris will learn a lot from him. Grandma is still scurrying around keeping the house presentable, trimming hedges, washing windows from a ladder!! She did fall doing something stupid and cracked a rib. Did she slow down? A little but not for long. The minute she feels well she is tackling a project. Then she is down for a day of rest with her dog Sammy.

sam saying happy birthday 

Steve?  He is working very hard so by the time he gets home, he is dead tired. The magic of our Friday Date Night is over. He has been selling his mother's things which is emotional. The money is going towards my caregiving costs so that adds to his stress, it's not even being used for something fun.

What I need to do is find a job - any ideas??
Movie recommendation - Hugo. It took me by surprise , a delightful story.


 It's been a couple interesting months but everything is back on track and moving forward.
Watch for the next post which talks about the very personal decision to go on ventilation (life support) or not .  Thanks for checking in.

Heidi

You have ALS. Now what?

Before I get into this post I want to update you on the last few weeks, since we talked last. Let's see...Friday nights with Steve is still working out. Last night was fun, we have now gotten the "prep for bed" routine down to an hour and /or the length of Adele's 14 track CD blasting.(good thing my mom is deaf)  . Our neighbors dog woke us with incessant barking and to help me get back to sleep Steve curled up beside me and held me tight. Awwwww. It worked!
Movie recommendations:
Around the  Bend  and Never Again.Both were done through Netflix streaming.
Thank you for the comments to the February post "What a difference a year makes".  It was the first time my kids had heard me talk so candidly, especially my son, Chris.  It was rather upsetting and difficult for him to read. As I mentioned before, we didn't get into the mortality details with him in the beginning because of his age. Well he is now 16 and he knows we need to "talk ". The door has been opened and we will talk when he is ready.

This Post will be more of a practical guide for after you have been diagnosed with ALS. This is more nuts and bolts and some of the information has been posted before. If you have ALS or you know of a PALS (People with ALS).and have questions, please ask in the comments section or    email me at hgoodswak@verizon.net. 

You will be in shock and you will be angry. You have just learned that you have an incurable disease that will piece by piece take your body away from you, eventually leaving you paralyzed and mute. It affects everyone you know. On the bright side, it does not affect your brain, you retain body sensation and feeling, there is no pain, except pain from overcompensating, and your eyes still work. You still can make a difference in the world and you gain a new appreciation for life.

I recommend first you get some sort of faith, I cannot imagine going through this without some belief in a higher power. You might say, how could a higher power, who supposedly loves me, let something so devastating happen to me and my loved ones? That's where trust in your faith comes in, knowing there is a reason for everything and even though you don't know why, believe that it will be good.

Now you must set the self-pity aside and start focusing on what you need to do to be prepared for the upcoming changes. Slap a smile on your face and remember the things to be thankful for. Everyone has "stuff" in their lives, many have it tougher than you.

Enough preaching.

It is recommended that you get new equipment at least 3 months before you need it. I was mind boggled by that concept , thankfully Steve was able to recognize the "big" picture and kept me on task. Listen to your body for clues about what body part might be affected next. For example, my clue was cramping and slight spasming in an unaffected area. This would happen 3 months before it would degenerate. This was very helpful. Have a circle of friends and / or family near you that can keep your spirits up and help you keep things in perspective and positive. This is called the Inner Circle.(see 10/23/11 posts for more details)


BED:
Steve researched beds for a couple months. The   most important long term piece of equipment. Key points: -0- pressure points, Ergonomic support, reduced body temperature, efficient blood circulation. The massage / vibration feature is imperative to have. Not only  does it keep your blood circulation going but if you're on a respirator it keeps your lungs from getting gummed up.  Nothing like Magic Fingers!!
The pads on the bed are key to not getting bed sores, they must be breathable.  We replace the pad annually, approx.$100.  Do not buy a standard hospital bed, they don't have the right padding.  When I was in the hospital a couple of years ago they gave me a bed that rotates your body. Steve looked into them and not only were they 3 times the price but they didn't meet  any  of the necessary points. The market may have improved since we were buying but make sure it meets the other key points. We bought the SAT Bed.(Self Adjusting Technlogy). httP:\\www.satbed.com .
This bed has been worth ever penny. It meets our criteria and then some.  The  base has 2 air-filled canisters, topped with a zippered section with the pad and closes with a layer of sheepskin. On top of that is a mattress with the ability to customize from soft to firm and everything in between.  Oh, and it works with your existing bed frame so your room doesn't look like a hospital.
A bed rail might be handy in the beginning for assisting you with getting in and out. This should be bought separatly from a medical supply store or an ALS closet (see10/23/11 post)

Walking:
As soon as you notice your gait changing , start living in sneakers or something sturdy and flat, not heavy. Buy a walking stick (see 10/13/11).  If you need a walker, get it on loan from an ALS or MDA closet. You can also get loaners from Senior Centers. I don't recommend buying one as you will only need it for a few months.

Wheelchairs:
When it comes time for a wheelchair, the ALS and MDA organizations are a great resource for vendors. We had very good luck with Craigslist for an interim chair. When you start planning your long term chair you need to think about the future. It is very difficult to envision where you will be physically in a year or even 6 months. Questions are asked that you have no way of knowing the answers. How do you want to power your chair when your arms don't work anymore? I was given 2 options. Sip & Puff or a head control unit. I went with the head control unit as my head and neck were still strong. I had difficulty picturing    using  the Sip & Puff if you had a weakened respiratory system or if you were able to talk. Too much stuff in my face. The head console worked very well. Make sure you add the attendant feature. This enables others to operate the chair from behind. The cushion must breathe and they have some great materials for that. I got The Storm with head control and computer console. The computer console is the size of an I-Pod and attached to the arm of the chair. I used it to change my speed and switch to reverse. It was also used fodiagnostics and trouble-shooting.
The process of choosing , training and perfecting your chair can be long. It's worth it. I recommend going with a vendor who will come to your home for training, fittings and adjustments. They should also have a location, within a reasonabe distance, that you can go to for any tweeking.
This is your most expensive piece of equipment and Insurance and Medicare will foot the bill. So, make sure the chair fits right and use the sales group as much as possible to get it perfect.

Eating:
There are special silverware and plates that simplify feeding yourself. Assortments will be found at your medical supply store. Simmons is a good supplier and you can see their full aray on the internet. Although I tried to feed myself as long as possible, to watch me was difficult, it was a lot of energy. My husband Steve would cut up my food and feed me along with himself. This was very humbling but I appreciated so much.

Safety and  Dignity:
As your body progresses through the disease ,privacy tends to wane. Let's jump into  some personal issues.
The OT at UCLA recommended a few changes be made to the bathroom. First order of business was to change our shower and tub configuration. They were separate units to start with. The shower had a glass door with a threshold. Eventually it was too dangerous for me to step in. We went to the home of a PAL that had recently done some retrofitting. We heard about him through the MDA. The plan for the shower came from him. We pulled out the shower and tub and built a walk/roll-in shower.  It's beautiful with a rippled glass partition for privacy.
Then came the shower chair. We had used a sliding bench for a while but that only works when you have upper body strength. The best piece of advise was, make sure it can tilt. Not recline, but tilt. The same goes for the wheelchair. Tilt is your friend. If your back muscles are weak when you recline, your head and body p osition will be out of whack when you sit up. A shower chair that can double as a potty chair, has wheels and can tilt is a little more expensive but is worth every penny for the safety and comfort. Insurance and Medicare will help.
Next is the potty. You will want a taller one. We chose Gerber. Put hand bars on the wall so you can pull yourself off and on independently. I used a walker without wheels for balance. Our OT advised we add a bidet system. We chose Toto. It is an enormous dignity factor.
Preserving what dignity you still have takes on a new meaning as the ALS progresses. It's not really about pride, it's about normalcy  and trying to hang of to your sense of self as long as you can.

Well, that's a lot of information and I hope it helps. I will post more on communication in another post. Also look for the pros and cons of getting a respirator. If you have any questions please send me a comment or email.
Thanks for reading.

What a Difference a Year Makes

Before I get into my story I must catch you up on what important things have been going on recently.

The beginning of a new year in our house is filled with talk about budgets and finances, especially since the ALS. Fun stuff!!  Caregiving is our highest expense, it's all out of pocket and it's 24-hour because of the respirator. I have a wonderful team, like family. Well , in an effort to save, Steve decided to take over Friday nights. Now he already takes care of me during the day on the weekends so this was an add-on of another 10 hours.  Nervous? Me?Heck yes!:) Steve can be a bit cranky when he is tired.(understatement).
Well, I shortened the usual routine.It's been 6 Friday's now and it's been good. There were a couple hiccups the first night, a few tears but we got through it. Now that we are pro's at it, it's actually fun, it's something I look forward to. Last night we hunkered down with a movie (Pirates of the Carribean#3  , not impressed)) and shut the rest of the house out. It felt like a date night. A lot of laughs, good conversation, everyone was patient. I know these nights are making  memories that will last, with a smile, after we are parted.

A story about the strength of the mind, truth or fiction?
I read my journl from 2010. I have never been good about keeping up with a journal. I only wrote 3 or 4 pages and I know I had a lot more to say. Anyway, around Thanksgiving 2010  I had a very eerie and very real feeling. I was sure that this would be my last Holiday. I had been listening to a Joyce Meyer series about listening to God. I was certain this was a spiritual  message, loud and clear.
 A few times a year I am pressured by Steve about the future, how my hanging on to life is taking away his and the kids future, monitarilly. How there will be nothing left by the time I go. Now I know that sounds harsh but his fear is very real. I carry a lot of guilt about this. It was soon after one of these "sessions " when I had this revelation. I have toyed with the idea of pulling my own plug. Since it's a fatal disease and I am kept alive by machines,  it's not really suicide, if it's something I really want and am peace with. So it doesn't go against my religious beliefs. I just don't want to.  Anyway I have what I think is a loud and clear message from God, it couldn't have felt more real. I keep it to myself initially. I prayed often for validation of this news. I wanted to be REALLY sure of what I was hearing.
The 2010 Holidays were very surreal, I felt as though I was detached, watching everything from the outside. After the Holidays the thought was still in the fore front of my mind, I couldn't shake it. I got serious about planning my memorial service, more importantly the party after. It felt so real I finally shared it with a few people. One of my close friends has a great house for a party so I had to ask her for permission to use it. This lead to questions about my mortality. We talk it out and agreed that it was very plausible. I had outlived the UCLA prediction, I was getting out less and sleeping more. I felt validated after our conversation.
Then I talked to Wanda, my day caregiver and a very spiritual woman. She supported my theory, but made sure to remind me that only God can make that decision. I then told my mother because I wanted to share that God talked to me. She placated me by listening but she never believed me. Then I told Steve. This was during a time of financial panic, and I was so convinced, he did get emotional relief.
So my semi-annual lung doctor appointment comes and I am healthier than 6 months ago. I was surprised by this news, I should be getting worse not better!  This was working against my revelation.
Christmas came and it was the best in years. New Years comes...and goes, still here.  Steve looks at me as if to say.."well?".
Now I have to face the reality that my revelation may not have been from a higher power. What I have learned.
God will not tell you your expiration date. Although He knows when it is, He is not going to tell you.
My mind was looking desperately for a solution for Steve, and the power of  the mind is so great. It had to be a human fabrication, brought on by my guilt, nothing supernatural about it.
Another thing I learned is don't look outside for validation. True validation can only come from our Lord via the Holy Spirit. Our friends and famly don't know the answers about my mortality.
With anything you must give it to God, trust your faith, stop being anxious, shut up and be quiet so you can hear the answer.
The power of your mind and the power of the outside world will not give you the answers.

Thank you for letting me ramble on and share with you. Next post will be Helpful equipment tips for ALS and other people with assisted devices.

Surrounded by Angels

Something so profound started in '07 and still continues today. 3 girlfriends and I met at my house once a week for a Beth Moore bible study. Our common friend factor was our kids went through grade school together, Ashton 's class, and church. Some of us knew each other well  and other relationships where new. In hindsight we were brought together for a reason. They are my Angels. During the study we became increasingly close. These friends watched the ALS progress and witnessed the physical, emotional and family impacts. Lori, Susan and Nan became part of the Inner Circle and helped communicate our family status and needs to the community. Many people in the Valley wanted to help but they didn't want to intrude.
As my mobility weakened they were first to come up with ways to help. Monday , Wednesday and Friday  one of the Angels came over to cook for my family. I would choose the recipe, purchase the ingredients and they would prepare the meal. They did this for a year!
 People in the area started asking how they could help us.  Susan organized a meal group/ministry, our Meal Angels . Those interested  would sign up to bring a dinner for my family . This was an enormous gift. Steve was always the weekend cook and I did the everyday meals. I did not have enough mobility in my arms to cook anymore. I could not imagine Steve making dinner every night after work and commuting to SB, he would crack. Receiving 3 dinners a week has given the kids a routine and a sense of "normalcy". To this day we still have dinners delivered Monday and  Wenesday, many of the families have been with us since the beginning. Our Meal Angels come from all over the Valley, a true community effort. Our 3 Angels have shared the organization efforts, with unselfish fervor . The Meal Angels go out of their way to bring us healthy and fun meals. Chris, Steve and my mother look forward to the meals and there is usually a thoughtful extra dessrt with Chris in mind.


 Grandma , Nan, Susan, Lori and Sammy (dog)



Janis doing her magic, Wanda looking on. 

Another Angel: In October '07 I get a phone call from Janis. I had not met her but we have several mutual friends. Her fiance had just been diagnosed with ALS and she had questions. We quickly become friends. John had a very fast type of ALS and it started in the throat and lungs. I still find it amazing how ALS can hit people so differently. We talked often on the phone, comparing notes and giving each other words of encouragement. Janis was the first person I had spoken with that was personally involved with ALS. Unfortunately John passed within months of his diagnosis. I was glad to be there for her. Truth be told, she helped me much more then I think I helped her. She is an Angel.  Janis and my Steve organized a community car wash to raise money for our growing medical expenses. Another testimony of our incredible community. Janis comes on Wednesday and we catch up and read. She used do nails professionally so once a month she gives me a mani/pedi. I am now noticed for my beautiful nails! Something I NEVER had before the ALS. Pretty easy since I don't do dishes anymore. :) 

Another Angel: One thing that PALS (people with ALS) need to be watchful of is stiffening / freezing of the joints. Nan recommended a Massage Therapist, Diane. I had only had massages as a vacation luxury but it sounded like a good idea. Diane came to my house twice a week and gave me an hour each time. Pretty decadent, right? It was obvious that this was a much needed therapy. As time went on our expenses grew, especially when I went on the ventilator. I had to cut back with Diane to once a week.   Diane was very sensitive to our financial needs and after reducing our rate a few times , she offered to continue as a gift!  We have been together since late '08. This is another enormous gift. I know for a fact that the reason I have good range of motion and good flexibility is because of Diane.

Lori, Nan and Susan still come over, every week. Each has a different day, Monday, Tuesday and Thursday. They come over for a couple hours. We visit and talk about what is going on in our lives. They help me with business calls and yucky, complex business situations (insurance and medicare).  We choose an assortment of books and try to get in reading time each week. Between my audiobooks and the books they read to me, I am usually involved with 5 books at a time. Very fun.  Diane and Janis come on Wednesday, my pamper day! These Angels bless me with so much. They encourage, challenge and support me. Incredible people that feed my soul and are a big part of why I am doing so well.
There are many articles that state good caregiving is key to staying healthy.  I realize that sounds like stating the obvious but you would be surprised to know that what I have is not the norm. There are so many PALS that don't have family nearby or are in a facility with limited stimulus other then the staff. 
I have a wonderful team of family, Inner Circle friends, Angels and caregivers. (You haven't been introduced to my caregivers yet).  I am truly thankful and truly blessed.

Matthew 6:3-4:  "But when you give to the needy, do not let your left hand know what your right hand is doing , so that your giving may be in secret. Then  your Father, who sees what is done in secret, will reward you.

All of the Angels are true gifts to me and my family. Thank you for your fellowship.