Husband's progression has sped up!

[lydia]

Linda and Vicky,

My thoughts are with both of your families.

Lydia

 

[rose]

Linda,

I was saddened to read your post. Just know that you've got many friends here in our little virtual world. I hope you can find some help with not only your husband, but your dear daughter as well. ((hugs!))

 

[trying to stay positive]

Thanks everyone

I so appreciate eveyone's responses and prayers. I had my daughter at the Dr. before my first post on this thread. She said it is stress. What a surprise. :roll: She is seeing a therapist but will not talk about her Dad's illness. :sad:

We do have a chairlift for seven of the stairs. In the days since I first posted, he now needs assistance to go up any stairs at all. Last October he could walk (slowly) across a huge field. Now he can walk across a room slowly. How can this be suddenly going SO FAST?!

We had the RT out to the house and hubby now has a bipap. His FVC went from 89% at the end of August to 61% at the beginning of February. And we are awaiting insurance approval for a powerchair.

He is still strong from the neck up, but that is about it. No problems swallowing, but he practically eats with his face in the plate. How a disease this cruel can exist is just beyond my comprehension.

Does anyone have any ideas about how I can make it easier for him to eat? It is one of the few things he still does mostly on his own. I was thinking that maybe one of those trays that are used for breakfast in bed might work if I put it on the table, so he can have added height & rest his arms on it.

I just HATE that PALS have their dignity robbed from them. :x It seems like almost everyday there is another thing that he is no longer able to do.

Patty - I had Extreme Makeover suggested to me by my SIL, but the problem with that is that we are stuggling to pay the mortgage since hubby is on SSDI, and we HOPE to move to a smaller less expensive house.

I am just so frustrated, I thought we did everything right. No debt except for our house, an emergency fund in place, older but paid for vehicles, etc. But who could possibly plan for ALS and a tanking real estate market & economy, much less all of them at the same time?! ARGH!:x

OK, sorry. This started out thanking everyone & now I am complaining again.

Bossman - how did your fundraiser go? Were you able to attend?

Thanks again to all for listening.

 

[MtPockets]

Have faith in God and pray for one another.

Heavenly Father,
You hear the cries for help, and I ask and agree with others that somehow these needs will be met in Jesus name. Please have mercy on your children as we face very difficult times. Give us the strength, faith, and love to somehow overcome all that we face today and every day, one day at a time. In Jesus name. Amen.

 

[Kevinski]

just a suggstion

Hi am sorry to hear about your situatuation ,i to have als bulbar onset ,but can get around well still.Our house too was not conducive for a person with diasabilties.We live in a small rural town outside Calgary alberta.We had an estimate done ,for the work needed and it was 25000 dollars which just was not on the budget,Anyways some good friends aproached the local Lions Club and they agreed to take on the project so last fall over two weekends ,with volunteer labour and some know how ,the job got done.Was amazed and so gratefull at the support our family received .so when the time comes when i need it ,its all done.So why don't you aproach some local service clubs .maybe you even know someone who is a member that can pitch you case.Good luck .kevin from Calgary

 

[mndireland]

Hi, Im not sure if I can help but here are some suggestions that I know help in our house. My mums positions is similar to your husbands, well a little more fargone, but we have adjusted some things. I have to say our country seems to be much better than yours in healthcare, we are getting an extension built and are being given 24k from the local council towards it, and they give us a lot of equipment, due to the nature of the illness. Also we have the motor neuron disease association, I dont know if you have anything similar, they loan you equipment, wheelchair, stairlift, alarms etc.

Anyway some steps we use, again we only have the chairlift for the first 10 steps and takes two people to lift her feet up and help her get up the others. We have an electric pillow lifter, with handheld remote that sits you upstraight in bed. Downstairs we have put a comode (like a childs potty) in our closet, painted it and put a light in to do a make shift downstairs toilet, it does smell a bit as no window, but scented candles and bleach are great! I got a little trolly on wheels, only a cheap thing, that I wheel her meals in on, and she can lean on and its easier than a tray. If you get knives and forks with fat handles I call it, they are easier for her to hold. I have a little alarm, she presses it if she needs anything, this has been a godsend, especially in the night.
The above are not expensive items, and if anybody offers to help you out, friends family etc, I would just say if you are in the shops and see such a thing would you pick it up for me, I think it could help. You will be surprised. I was looking for mittens instead of gloves with fingers as I couldnt find any anywhere, Now I have 3 pairs for her!

Hope some of this helps!

 

[puddycat]

I am so sorry to hear about your worries. I am on the same path as you are. My husband has ALS and at the time of being DX he was working as a contractor. No benefits! When he gets his last paycheck, which will be any day now, we probably will have to move. He was the main bread winner in our house. I have since gotten a full time job and work another 20 hours a week at another job and I am trying to get my Masters in Education so I can get into teaching. It feels like everywhere I turn I hit a roadblock.... Now comes the question of what will I do when he needs someone 24 hours a day... My son is 11 years old and I am trying to protect him as much as I can..... Good luck to you and you will be in my prayers! Just know you are not alone!

Tanya

 

[MtPockets]

Hope when there seems to be no answer.

I am sorry to hear of all the stories of how you cannot get the help you need. I hope and pray something will open up so your needs will be meet. If your local newspaper has a write in section, maybe you can put in a letter asking for some volunteer help in your area.

Never give up Hope.

Help may come from someplace you least expect it. I know of many stories here on the forum that seemed to have no answer, when out of nowhere someone meets the need.

 

[brendapals]

Mt-
How true, we must NEVER LOSE HOPE

I pray that God hears all of our concerns and lights our way.
take care all,
brenda

 

[CindyM]

I don't have much to add but sometimes it helps to remember to tackle one problem at a time. Thinking about them all at once gets overwhelming! And you deserve help wherever you can find it. Nobody likes to ask but we know you would give help freely, and probably done so in the past so now it is your family's turn. JMOHO. Cindy