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rmstudier

Active member
Joined
Jan 31, 2010
Messages
94
Reason
PALS
Diagnosis
01/2010
Country
US
State
wisconsin
City
eau claire
I think I have reached the point of progression where I am chronically depressed. My legs are useless and I can't raise my right arm very high. I need help getting in and out of bed and off the toilet, and need bathing assistance. I can't turn in bed without the hospital bed rails which means I cannot sleep comfortably anywhere but home. My butt is chronically sore with the threat of pressure sores and simply repositioning is a struggle. I'm getting home health care, but this can end if skilled services are no longer approved. We are whittling away our savings for van, ramp, and now big bathroom remodeling project.

My wife works out of the home and one son lives with us working on the phone and computer for his job. I feel guilty asking them for the littlest of things and my wife is very tired working all day and then dealing with my needs.

One can spend only so much time on the Internet or watching TV. My relatives do not live close so visits are sporatic.

Just venting....but can anyone identify?
 
I can identify with some of your struggles, and give some ideas--and just hope that they are achievable for you. First, the bedsores... The ROHO overlay on top of your hospital bed, each of three sections pumped individually. The wheelchair cushion--try a ROHO Quadrant. I had continuous tailbone and sit bone soreness until changing to that cushion.

Add a large pillow under your knees, and then stay only on your back. I needed to try several under the knee pillows as well as adjustments in the hospital bed to remain on my back, but within a couple of weeks, it was do-able. Now I'm very content in not turning.

I'm female, so am trying here to figure this out, but I think by raising the head a lot while in bed, you can use a urinal, perhaps? If not, then have you tried the condom catheter? It seems most guys can use that and not have to be hoisted to urinate.

I spend time reading, with a book propped on my lap in the chair sometimes, but usually and increasingly, I read in bed with the book on a pillow on top of my chest, above the diaphragm... it doesn't interfere with breathing.

I hope that you will find help in this forum and this virtual community will then become important to you.

And there is every chance you could benefit from medicine for your depression. If your physical pain could be taken care of or greatly helped, perhaps medication would give you the ability to find pleasure in new things... whether this or other forums or in reading. There is nothing as tough as emotional pain... I so hope you will find a good way through the current problems and at least knock a few of them out of your way.

I expect some others will have great ideas, and maybe give you better information on the urinal deal!

Ann
 
p.s. The bed overlay is called ROHO Prodigy. Amazon sells it as well as the chair cushion, using different stores so you can compare prices.
 
I can sooo relate to some of your issues. I recently asked my doc for some anti-depressant drug and for a sleep aide.

Like you, I cannot turn in bed, and both arms are limited in range of movement. I have always slept on my stomach or my side with one arm up under my pillow. NO MORE -- at least not without waking my partner to help me turn and move an arm up over my head and under the pillow. :( I have an adjustable bed and have discovered I can sleep on my back with the right adjustments to head and foot AND a sleeping pill each night. (I will admit it took some getting use too, but now it seems "normal" most nights.)

I do know what you mean about disturbing a caregiver for those minor things -- I still do "without" on occassion, rather than ask for something. However, I am learning that it is easier to ask for help if I preface it with "When you finish at the computer, could you help me get out of this chair?" or "When you have a few minutes can you help me put a sweater on - it is getting chilly in here." I also notice that when I thank the person, they tell me it was no problem and ask if there is anything else they can do for me?

I have found I am occupying more of my time reading, and with a computer aide, "Dragonspeak" I can stay in touch with my virtual ALS family on this forum, even when my hands and arms are not working. Since I never considered myself computer literate or a techie, I am now learning how to scrapbook electronically and making a scrapebook of my life for my grandchildren. I am also writing (typing) a journal of my journey with ALS. My most recent task is gathering recipes that I serve at our B&B to be printed and sold.

The depression can be worse than the disease but, once I conquered the depression, I found lots of opportunities out there for expanding my life and bringing joy. I pray that you will too.

Welcome to our forum family -- visit often.

Hugs,

Diane
 
I'm using condom catheters to good advantage although I don't during the night (I thank God I'm not female in this case). I've got a pressure varying mattress on my hospital bed and it works pretty well.

Diminishing mobility is my main concern. It's difficult to stay ahead of the progression. I'm not looking forward to hoyer transfers. I find it difficult to deal with feeling functional on one hand and being progressively dependent on the other hand.

Thanks for the responses. They make me feel better. This is a lonely disease....two ALS friends in this locale died within the last six weeks.
 
I understand that. I am hoyer lifted as well as needing diapers full time. Two of my friends and my husband are my caregivers, and do the transfers on a schedule although I can call if needed. Today I foolishly bent down to my footrest to pick up something I dropped--with the refrigerator door open. I couldn't sit up. But, my phone was on my lap, slid right down to my hand. I hit the right button without being able to even see it, and my friend came to get me out of the refrigerator and to sit me back up. I wasn't bored; a pain in the neck for others, on the other hand. I followed that with a nap. We just do the best we can, and are thankful for those who help us.

Are you still able to speak? Have any buddies you can get in touch with? If not, you have them here. I'm very sorry about the loss of your local friends. Down at the bottom of our main page, "ALS/MND Support Group Forums", there's a section for new folks, and if you tell Barry G where you live, he will "pin you" on the map and you may find someone else not too far away.
Ann
 
Im not too far away. Just a few hours. Not a PALS though- just a CALS. If youd like to chat, let me know.
 
mstudier-
Just wanted to offer you some support and let you know you're not alone. I can relate to what you're saying and feeling. The loss of physical independence, the expenses, being uncomfortable, bored, a little lonely at times, feeling guilty about asking for even little things ... it all sounds painfully familiar. And let's not even talk about how embarrassing and depressing it is when you first start needing help toileting and bathing. My first home health aid was happy, talkative and barely out of her teens for goodness sakes! I laugh about it now, but it was so awkward and even a little disturbing having a young woman my daughter's age happily pulling off my boxers and washing "my boys," as she called them. :oops:

So, in my own way ... I understand some of what you're going through. I felt trapped in depression for quite some time. In my case, a prescription antidepressant helped get me back to my more normal self, and my deepening faith changed my perspective on things. And believe it or not, the whole toileting and bathing thing does get easier with time.

The physical devastation of ALS is obvious; but, those of us here also know it's often emotionally, socially and spiritually devastating, as well. When I told my ALS doc that I was feeling depressed, he said, "I'd be worried if you weren't depressed," and got me started with an appropriate treatment plan. Perhaps you could call your specialist or GP about it soon.

Beyond that, know that Ann is a wonderful, compassionate soul who speaks from experiience; so I encourage you to follow-up on all her good suggestions. And please, keep us posted on how things are going for you. All us PALS are sharing a difficult journey that few can truly understand. I've found this forum to be a place of support, understanding and friendship and hope you do too.

Wishing you strength and peace,
 
In the time it took me to write my last post, several others popped-up. (I type reallyyyy slowlyyyy ...) I don't want anyone to think I intentionally slighted Diane by not mentioning her suggestions and wisdom!
 
David,

I am not slighted in the least. I am no wiser than any of the rest of us -- perhaps just more thick skinned and hard headed than some. By the way, I know all about the slow typing!

Hugs and smiles (even giggles) coming your way. :)
 
I am just slightly ahead of you by the sound of it. My first symptom ten months ago when I started dragging one foot. Now I cannot walk. In a wheelchair all time and both arms very very weak. My right hand is virtually useless and my left his stiffening up and becoming very weak. I am totally dependent on help in the toilet area and only lost the ability to the myself about two weeks ago which I find really really embarrassing if I go out to eat. My breathing is becoming Laboured especially when I am sat down. It is depressing frustrating not being able to do so many things now and seeing everyone else going about doing whatever they like. Anyway we are all on a one-way trip whether we have A. L. S. or something else. At least we know already how we are likely to die and can make some arrangements.

At least living here in Thailand it is easy to get help. Through necessity I now have two ladies living with me at not a great expense. I have enough money to see me out anyway as I don't expect to be here by the end of the year. Once I am totally paralysed and cannot swallow or speak then that for me will be the end of quality of life for me and I will exit under my own terms rather than suffer and let this horrible disease take me.

Here it is very easy to get things done and is not costly. I kept my independent mobility for as long as I could by converting a Honda click scooter to a three wheeler so it didn't fall over when I stopped. I only got about two months used out of it before I had to give up because I did not have enough strength left in my hands to work the throttle and brakes and have now converted back to two wheels for the ladies to use. I also added a sidecar to a Honda wave with a ramp at the front so I can be pushed up the ramp in my wheelchair and can be carried round in that.

I cannot type any more so use Dragon NaturallySpeaking voice recognition software to do things like this.
 
sympathise with everything. see my thread what to do whil dying. I just cannot get out of the depression and am fed up with constant discomfort plus the ongoing constipation, not being ab le to be understiid etc etc. OH how to beat the depression! asked doc for more last time i saw her and she refused.
i hate this life like this and cannot escape. Say to everyong i meet - help me - but no-one can.
 
IrisMarie, I so wish I could help you. I wish for so many things for you, beginning with the end of depression. I do realize that we're all in very different situations, with differing levels of help from friends and family--which is hugely important to feeling content. Hugs, my Iris...

Landofsmiles, the early stage of being toileted by others is the worst, and if your helper is matter of fact around you, it's much easier. My buddies caught on quickly and we usually have conversations the whole time, with me interrupting to ask them to keep moving. I'm swinging in the breeze sometimes. It's now the accepted reality to be cared for in this way. I'm amazed with what can become acceptable...
 
Well at least I haven't fallen into the refridgerator yet! I'm glad for you that you could summon help quickly. Makes me think I should subscribe to Quick Alert since I drop my cell phone easily.

I'm thankful for the home health aide I have. It takes really compassionate people to do that job.

I am on an antidepressant, and it helps a lot.

Thank everyone who has given input. It is easier to deal with ALS when you have PALs and CALs!

God bless all of you,
Randy
 
Randy, I'm glad you are here at the forum!

I have a pendant for calling help--see the "Tips, Tricks and Gadgets" for information if you're looking around at various kinds. I've taken away my refrigerator privileges since yesterday's fiasco. I struggled quite a while trying to get myself up. Not worth it.

It's really good that you have a home health aide, and someone who is compassionate. Also good that you already have an anti-depressant.

It really helps me if I can make my "trials" into humorous stories. My buddies who help me have come to expect that, I think, which in turn helps me be able to do it. I don't even try, for the most part with my husband. I'm better off if I just tell him I've done something foolish.... and then he knows he doesn't have to try to help me be sensible, and we're both happier. But later on I get to make it funny for him, too.

Just having somewhere to come where we are all in this thing together helps so much.

God bless you!
Ann
 
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