i need a little of this

[davbo49]

this last few weeks i haven't been to good. it's hard for me to think with all this pain. im falling apart. the meds helps some. sleeping is another thing. my als team knows that i can't get out my own bed any more so i have to sleep in a chair so i can get up. first they told me they will get a bed with a lift on it. then they told me that kansas is stopping it. well jane got in there with the state and got a ok from them. then it goes back to the als team. they said they can get that out to me right away. well im looking in to buying a use one now. all they can do is keep call and asking if the bed is helping. what's up with that. then there is the stuff for the pc. i ask them if i can get any help for that. they said o yell we will get back with you on that one. it looks like the als team ant going to be to helpful in this part. if i wanted to go to any alsa meetings i have to go over to mo whys that when we have ku one of the biggies mu in the us.

i seen on fd the other day where alsa put op saying this is the season of giving. i don't see that all i see it's the season of taking. it's taken my hands my arms and now my lags and the life i ones had. what more the bills i can't keep up with them now. ssd what the hell is that 700m my light bill alone is around 1000km. now when i go out anywhere when i can people just looks at me and you can hare what they are saying and when i eat it's like no one wants to be around me. you know what i don't give a shit but it dose take me back to the man i was at one time and that's hard. at this point i wish this would go on and take my life fast.

im sorry i needed to r and r some. im starting to see some if my posting as been a little hard on some of you threads so i thought i should let some of this out.

 

[dalvin]

Rant away Davbo. My opinion of the ALS clinics has been declining for some time. Think they only see us as guinie (sp) pigs for their research numbers.
Some of the ALSA co-ordinatorswill help you with transport to and from the meetings. Before I got my van, mine sent a handicap transport company out to pick me up. Warning, not all ALSA teams are the same but you can always ask.

 

[cheerleader]

Davao, I am crying for you this morning- for the indignities you are enduring in having to beg for help, and feeling so frustrated by feeling like you are not the man you once were. I am POSITIVE that Jane doesn't view you that way. You will always be the man she loves. You are NOT your disease!
As I have cried through this week of having my husband free of this monster, know he is still here in spirit taking care of me. A gift he gave me, and you can give Jane, is a list of things that have to be done in the house, yard, car! I know when to call and have crabgrass preventative put on, and when the oil needs to be changed, and when to put salt in the water softener, etc.
And although this disease has robbed you of so much, I suspect it has GIVEN you as well. Know the last two years have brought us much closer together, as we spent so many hours planning, talking through things and sharing our deepest thoughts. Know we have been kinder, more patient and loving- because with this disease, you realize that love is the most important thing you have, and remains DESPITE the disease.
So Davbo, hope you can find comfort in knowing your family loves you and you still can take care of them in so many ways. Hugs to you all this morning. Stay strong in spirit, dear man. Donna

 

[Nikki J]

I am really sorry. It is so hard.
Re the bed. I am confused. Your clinic thinks you have it and you don't? Did the order get sent to the company that would deliver it? If it is a regular hospital bed it should be a slam dunk and arrive very quickly. Find out if the order was sent and where then call the company. You should not have to chase this but unfortunately if you do not it seems no one else will
Re the communication. Does your clinic have a special assistive technology section? You might need an appointment there. Another avenue is sometimes ALSA once my sister had her dynavox there was a speech therapist who specialized in assistive technology who helped with problems
Re the whole mess with the clinic. Do you have a contact person there for problems. For things like the above to find out where things stand I would contact my primary nurse. Do you have anyone like that? Or is there a social worker at the clinic?
I am really sorry you are not getting the services you deserve

 

[davbo49]

the one i have been taking to the most is a social worker. hes the one that keeps ceiling. all he can say is. i will get on that and see what's going on. jane done went through the roof on this. i hate having her talk to them any more.

i thank you guys for taking time out and reading this and your support. i need to let this out and dalvin i do feel like a guinie pig with them.

 

[Grumpy'sWife]

Davbo,
Your post brought me to tears this morning. I am so sorry for all that you are going through and that it doesn't sound like you and your family have the support you need. This disease is hard enough without all the financial problems throw in. Is there an MDA chapter near you who could maybe help since it sounds like ALSA isn't? I know I wasn't thrilled with our local ALS clinic but they did give me info on a support group in our area ran by MDA.
Jane sounds like a wonderful woman and as lucky as you are to have her, I know she feels just as lucky to have you.
Hopefully you start to get the services and things you need.

~Kaye

 

[bigmark1954]

Davbo.....this really sucks, I wish I could tell you how to make this better. You definatley need some outside help, to get things done and take some of the pressure off you and Jane. My heart hurts for you, I hope things can change soon..
You have made me realize that things are not that bad for me.

 

[MaxEidswick]

>You have made me realize that things are not that bad for me.

Ditto that!

 

[affected]

Oh Dave, I'm glad you could pour your heart out to us, your family, but I'm so heartbroken all over again remembering and realising what this monster does to a person. The equipment is just SO important. I can't give practical suggestions as I don't know the system over there, but I can say that Jane needs to be a huge advocate for you and be like a dog with a bone over every single issue.

Here we were very lucky with MND NSW, but I still had to be completely on top of everything and be very proactive for Chris and be racing to try to stay a step ahead. This is what is so important - otherwise, like you feel now, you go into crisis. So I would have equipment here before he would even use it (we had an electric hospital bed for many months before he would get in it). This meant that when he absolutely couldn't sleep in his recliner chair anymore, we had the equipment here already.

It's not easy, but that anticipatory planning sticky I made is all about that.

Jane would do anything for you I'm sure, so if she can get on the case of sorting equipment, then the 2 of you will have more time to deal with the emotional side of what the monster does to a person and all the losses we grieve.

biggest hugs from Australia, we all feel every one of those things you describe!

 

[cheerleader]

Davbo, please contact your local hospice. They can help you do the paperwork for getting Medicare or Medicaid, depending on your age. Once you are on hospice, they will get you everything you need, no charge. And it happens quickly! We had the hospice people out and they could start services within 2-3 days. It is a myth that you have to be in the last 6 months of your life. With a terminal illness, you qualify. Our daughter was a hospice nurse and a strong advocate of hospice helping you in this journey. Know it is hard to maneuver all the roadblocks but try googling your local hospice. Someone WILL hold your hand through this- it's just finding the right person. Hugs. Donna

 

[Nikki J]

Hospice is an idea and certainly for the bed they would make it happen but if you do not have bipap etc and want it I think they do not cover it. Usually you can keep what you have in that area as it is comfort measure but initiating it is different. I am not sure where things stand with SGD but I know a big issue with the new rule we are fighting is that as a rental it gets taken away if medicare is doing a rental and you go on hospice. I f you do look at hospice look for a non profit one
Dave, up to you, but maybe if you shared what your limitations are ( speech and strength and function of your extremities) and the specific challenges you are facing ( turning in bed? Getting out of bed? Can't type any more?) maybe we can help you figure out ways to make things a touch easier until the services come through. Just a thought.

 

[davbo49]

i could use some of that. thanks. the bed i can sleep better laying down. i don't hurt as much. but getting up i can't throw my self up any more. jane can't pick me up and when she did try. my upper joints would try to come out. i been working something to get me up so can get to my feet. i can so what get to my chair. my feet have been getting smaller and they hurts to the touch. i don't knows that is about. the last time i got in bed. i think it was about 2 to 3 months are more. well i fell in to the bed and my head hit the back of my hand. i have a big not there. i showed the dr this stuff and they looked at it but that was it. the not is still there. any ideals on any of this. the bed thing would help the most. if i can come up with something i might not need the bed from them.

 

[Nikki J]

Do you have arm strength? A bed cane might help if you do Not knowing what your current losses are it is hard to help so if you can tell us whether you grip with either hand? Have muscles strength at all in an arm?

 

[Nikki J]

Another thought you need an inhome ot/pt eval which will require more fight with the clinic. Failing that do have a friend or relative who is / was a nurse or aide? When my sister started needing help her husband struggled to help her get out of bed, to stand from a chair because he did not know how to do it correctly. He was bigger and strong but lacked technique. Not sure if this is the problem but there is a lot in the right body mechanics. All of this is of course at best a bandaid. You need the bed but in the meantime....

 

[davbo49]

i have a little grip in my hands no strength in my arms. i can move my lower arms some. picking up are pushing is out. i do know when i started losing my arms they did a grip test. they said i was at 17 i didn't know where i should of been at. so i ask the dr to do it hes was 126. now i don't know where im at.