Recent content by KKay

My husband was not extremely claustrophobic, but it was an adjustment to wear the mask for long periods. There is a point when the mask and the air is a relief and not an issue. However he did take an anti anxiety medicine regularly(Zoloft) and the occasional Xanax before bed. He only used...

Dear Debbie, I do understand how you feel. You are at a crossroads. This is the place where you need to lead your family to the belief in eternal life after death on this earth. They may already believe, but it is certainly difficult when the chips are down. It is hard for your husband to...

We have a Shower Buddy chair that has been very accommodating thru the various stages and is very sturdy. Go to Myshowerbuddy.com, search "roll in shower chairs" It is model # 3B3T. It is height adjustable, has an adjustable headrest, foot rests that can be moved or removed and tilts, and...

we have a pair of prosthetic boots for my husband. They are nothing more than braces lined with fuzzy lambs wool (?) and straps to keep his feet in a standing position (ankles bent). They are a little uncomfortable so they go on and off periodically. This definitely helps to break the "tone"...

Well said Barbie.

They are prescription only - Lidoderm - Lidocaine Patches 5% . It affects the area it is placed on. We put one his shoulder and one on the bicep before bed, occasionally used on the lower back. It says you can use as many as three at a time. They last 12 hours. They have been a huge relief...

I would suggest addressing the rotator cuff as soon as possible. It sounds painful by itself and adding muscle loss or spasms in the future could make it unbearable. Additionally, there may be a point where surgery will not be an option due to respiratory issues. My husband uses Lidoderm...

My husband had been very similar. But has gotten more involved/interested in our lives in the last year. Not everyone is going to "live like they are dying". and that's ok. I accepted the way Tom chose to get thru this, however I can't say that I always agreed with it. It is hard when a PAL...

ALS can be a long or short journey. There is no way of knowing this for certain. The pain and struggles of a PAL are known only to themselves. How they choose to do "deal" with it is up to them. We deal with each setback as it comes and while it is sad and there have been many private tears...

Hi Barbie, Like Facebook I have little idea on how to work the ins and outs of this forum - let me know how to PM(private message?), because I have no idea. Now if you ask me to plug all the wires into my computer where they are suppose to go, setup the surround sound or wii, or paint a room...

I just popped in today for the first time in awhile. Summer has been busy, kids go back to school on Tuesday. It seems our schedule is working with caregivers etc but Tom has deteriorated to a much weaker state. I am heartbroken. I really just wanted to let everyone know that I pray for the...

Hi Pat, Whenever a new level of this disease begins I always think it is in my head at first and drive myself nuts thinking I am paranoid. At first you really have to be aware of such changes because it will be the difference between an accident (I have heard of some on this forum that are...

When on SSDI there are income limits if you work. I am not sure about all areas but I believe you cannot make more than about $14,000 in earned income for the year.

Hi Kim, Thanks for the prayers! I feel as though I am in circle of prayers, coming and going, my prayers to you in your journey! Yes, my husband was diagnosed five years ago with limb onset ALS. He has been in a power wheelchair for about four years. He is in the latter stages of this...

I agree. We talked to two different agencies before beginning to use hospice (15 months ago). What they offered to do was very different. My husband has been on BiPap the entire time.