wallyw1

[Mother's Heart]

Hi,
I miss seeing you here.
I don't suppose you know it, but Wally has been an important influence and support for me and my son.
Are you still reading here?
How are you? How is Wally doing?
peace,
cj
\o/

[callyflower]

Hi Mother's Heart,

I have wally's mom's email address. Will let her know you asked about her. Cally

[Mother's Heart]

Thank you Cally.

[wallyw1]

Hello, Mother's Heart, Thank you for thinking of us. Even though the ALS has immobilized Wally, Jr., his brain is thinking away. I don't remember when I last posted, but alot has happened in the last year. Wally wanted a feeding tube but was unable to have one because his CO2 levels were too high and where we live it has to be done with a general anesthesia. We remembered our doctor telling us about a doctor in NJ who specialized in non-invasive respiratory therapy and by then we had a wheelchair van and so off we went. What a difference that trip has made in the quality of his life!! We didn't realize how compromised his breathing was--his oxygen levels were good but he was not getting rid of the CO2. He was sleeping all the time and didn't want to go out for coffee which he loved to do everyday. The doctor put him on a Bi-pap machine to assist in his breathing. His feet weren't purple anymore, he wanted to go for coffee, he smiled a lot and best of all he began to FC again after several months of not communicating. He types faster and for longer periods and has typed some of his best stuff. He asked his Dad to take him to the ocean. His Dad modified our old camper and in September we went to Maine for 10 days. He was so happy--smiled all the time. God surely blessed him. Then this year at Easter time he was invited to a screening of a film "Mind Games" at Bowdoin College in Maine. The film is a wonderful, inspiring story of a doctor with ALS and his family. Wally got to meet the film maker and Dr. French's widow. The film maker's next film will be about Autism and the God Connection based on a book by William Stillman. I think he has a web site. So although ALS has made life very different for Wally, he says his life is better--he enjoys people more and people do respond to him more positively because he isn't compelled to grab food and be so active. He is tall 6'3" and was a little intimidating when he was jumping around. I think he jumped because of pain from constipation. I also feel he has survived ALS for so long (9 years) because of treatments developed for autism. Many of those ideas turn up on the ALS board. He is on the Specific Carbohydrate Diet which has made him much more comfortable and the last thing that really made him comfortable was Enemeez--a mini enema of docusate sodium which helps him to evacuate everyday. Constipation was such a terrible burden for him.

I hope all is well with you. Let me know how you are doing.

Thanks, Gay W.

[wallyw1]

A Wally update--Hello All, He is doing ok now, but in November Wally had a respiratory arrest and had a tracheotomy and feeding tube installed. We were trained by the nurses at the hospital to care for Wally's new "plumbing" and he came home on the 5th of December. He is on a ventilator full time. It has taken him a while to recover from the meds he was given to sedate him for his surgeries. We are trying Keppra for his seizures and that makes him tired. His breathing problems seemed to have been precipitated by seizures and his weakened breathing muscles (from the ALS) just couldn't do the job for him. He has been writing again and seems none the worse for weare--he was never without oxygen, I expect that helped him maintain his
brain power. He seems more comfortable--not spending so much energy breathing and eating. He is on Osmolite which is soy based and doesn't have gluten or milk. So far he seems to be tolerating it.

We wish you a Happy, Healthy New Year and we wish for all of you the ability to cope with whatever comes your way.

Wally and his family

[callyflower]

WOW...Wally's mom...

You never fail to amaze me with your selfless and tireless dedication to your son. It is truly inspirational to me. If I could be 1/10th the mom you are....

Happy New Year to you, Wally, and the rest of his family.

Cally

[wallyw1]

Cally--thank you, but I am nothing special--you do the same thing everyday.
Wally's Dad is doing most of the care with my assistance and that of Wally's younger sister. Dad doesn't do the housework, laundry or shopping that needs to be done so I do that when he is caring for Wally. I tell him he is as good as any Mother. Many people are home on vents with ALS. We do have Visiting Nurses checking on Wally 2x's a week, as well a respiratory therapist. The VN's will end after 10 weeks so I am told. Hopefully we will be having LPN's for 8 hours at night. Wally's seizures are so quiet (there is nothing left to seize) that unless you are right there you wouldn't know he was having one and they don't set off the vent alarm.

I think of you younger Mom's often. You have other children who need attention and a college education, jobs, housework, cooking and the difficult task of interpreting your autistic child to others so that they can have a life and the compassion that they deserve. Dealing with the school systems and hospital professionals (I was up until 3 am reading Kristen's saga--I am so sorry Kristen, that you had to endure such a horrific experience and Audrey isn't even autistic) is particularly hair raising--stress, stress, stress. Alot more has to be done to help the young families who are doing the best they can for their children. When I see all the help we get now that Wally has ALS, it upsets me. We all needed help when our children were bouncing off the walls and not sleeping or eating and screaming all night. I suppose it is that people don't know what to do with autistic children and they know what to do for someone on a vent. Such is the human condition. We all just have to hang in there and do the best we can. -- Wally's Mom

[milivica]

Wally's Mom!!!!!

Wow hello, so great to see you posting I don't even know what to say (go ahead and think it "for once").

I 'ditto' what Cally just said, I can't say it better. You're an inspiration of 'love', and that takes strength and compassion. You, without even meaning to, teach me to have more love and compassion, like when I hear another mom complain about something I WISH my kid could do. You're very right about hanging in there, and doing the best we can.

All my best to you and Wally and your whole family,
Love,
Lisa

[Isabelle]

Happy New Year to you Wally's Mom and Pop and especially to Wally. I am sorry that Wally went through such scary experience and that his seizures are increasing in a imperceptible way, hopefully Keppra would take care of that. I am glad that he is receiving excellent attention in very limited way, still lots of support comes from his loving family in that way Wally is very lucky.

My boy went through a period of distress that I have no idea what brought it. He is again watching movies or playing video games. Loves his spelling and math sessions with his sister and is trying to control his hand to write but so far he is not succeeding.

[wallyw1]

Thank you, Lisa and Isabelle, for your good wishes. It is so difficult when our children go through a stressful time and we don't know how to help them. I used to think that maybe Wally went through depressions--and who has a better right to be depressed. Did you ever have a day when everything looks gloomy then someone calls and when you hang up the phone you suddenly feel better and think "well, why didn't I call someone if that is all it takes to feel better." I used to wonder if that might help Wally somehow. So I would tell him things would get better and just take a deep breathe and hang in there. It didn't work right a way, but I think it did help. He looked appreciative anyway. Sometimes though his behavior would be so paralyzing that in keeping him safe my brain went into lock down. One of the other Mom's on this forum used that term "paralyzing" so I am borrowing it because it describes the situation so well. Thanks to whoever used that term.

Wally's Mom

[milivica]

Did you ever have a day when everything looks gloomy then someone calls and when you hang up the phone you suddenly feel better and think "well, why didn't I call someone if that is all it takes to feel better."

Honestly, I've had days when someone calls, and when I hang up I think "why didn't I shut up and let them talk more, why'd I interrupt and talk about animals and autism so much again"

But, I hear what you're saying. To feel better under Wally's situation and circumstances, I'm supposing you can't use typical ways, I mean you really have to brush off all the bull crap and seize on what makes your lives happy, centers us with joy and quality, in ways people with children without ALS or autism don't have to. I mean it's just different, might even be harder, if Wally feels joy in his life, feels loved, I mean those are the basics we all want. Am I babbling or making sense? I don't know enough about Wally, to feel confident I won't say something unintentionally callus. I just hope when the time comes for my physical life to become difficult, I can still celebrate inside, all the good. Cling on to all the quality I can, I mean who can say what a person will do or feel in Wally's position, but Wally. The one thing that is and has been obvious, is Wally gets to feel and know how much he is loved and cherished by his family.

Can you tell me where his story went, that I believe his dad posted some time ago? I printed it to read and now cannot find it.

Love xox to Wally and his family,
(nice new 2008 love, not sloppy seconds, hee hee)
Lisa

[wallyw1]

Very well put, Lisa. Yes, at some point we had to just deal with what was and if outside help arrived that would be fine and if it didn't we would be ok no matter what. Thank you so much for your good wishes and we wish the same for you and your family from Wally and his family