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.
Saturday, November 9, 2013
Our bedroom - we always loved carpeting, warm and soft in the morning, but as the ALS progressed, we had to think about our ability as caregivers to move Heidi to and from the bed. We had decided to remove the carpet and install laminate flooring with a light wood grain to match our furniture. We chose laminate vs. wood due to its durability..It does not scratch easy and is resistant to spills, chemicals and all the other fun stuff that accompanies turning your bedroom into a medical clean room.
The other area that needed a major modification was our bathroom, timing in the bathroom was key, as I always wanted Heidi to start using new equipment well before it was necessary to do so.
The first change we made was with our toilet, before Heidi lost strength in her legs, we changed to a "handicapped" height Gerber toilet, with that we also added a bidet made by TOTO. We were able to add railings that attached to the seat itself for safety and stability. This set-up allowed Heidi to maintain her independence and privacy for 6-9 mos. As Heidi lost the strength in her legs, I would carry her to the potty, we had some pretty interesting/comical discussions when we were in the bathroom together.
The toto is still going strong after 6 yrs, the gerber toilet has never clogged once, both worth while investments.
Our next change had to be in the shower/tub area. Heidi was able to use the shower enclosure while the strength in her left leg permitted, but there came a time where it was just too dangerous for her to do this alone. We went to a specialized bench that was about 3-4' in length, that had a chair which would slide on rails. The chair had straps/seat-belt arrangement for added safety and stability. The bench would straddle the shower door and together we would slide her into the shower. This was a stop gap arrangement, as we both knew Heidi would lose strength in her torso. So a couple months before we needed it, we demo'd our shower/tub enclosure and built a walk-in shower. Heidi had all the design input, the tile used, the shower glass, the two shower heads, one on the wall and a wand assembly which allowed for easy cleaning.
Heidi started researching commodes (shower seats) with recommendations from our UCLA PT's (physical therapists) We landed on the AQUATEC (THE OCEAN VIP)
Key design features
* The entire chair tilted back vs. reclining
* Doubled as a commode
* adjustable machine washable back upholstery
* adjustable head-rest
* adjustable footrests
This worked great until Heidi's tracheotomy, it was not safe to routinely shower her due to concerns about water getting into the machine and or her air-way. But Ashton and I treated her on mothers day, birthday's to a warm/long shower. We had to get creative with our keeping the respirator out of harms way, her airway securely covered to prevent water intrusion. Heidi only trusted Ashton and I to this treat.
Heidi's bed, Heidi already provided details on our bed's (SAT bed) which I am still using today.
Ramps, this was not really a home adaptation, but more used for mobility. We bought a PVI ramp made by Parairie View Industries. We opted for the Multifold Ramp which provided flexiblity to accomodate just about any set of stairs and patio's we wanted to traverse. Use of the ramp is pictured in "the big event" post, we used it to get into Ashton's home during our visit to Sacramento this past December.
Thank you for reading.
If you have any specific questions, please feel free to contact me via the blog