Greetings Binky,

I don’t know how much help I can offer, but I do sympathize with you. You sound like you are your sole supporter (like me). There are members here that have had their doctors push through SSI, but it still takes many months. I have often thought and hoped I could get on SSI someday, but now that I can hold down a job (first several years after GBS I kept getting fired because I couldn’t do the job physically).

One thing I did learn after getting GBS almost 10 years ago, is that if you don’t have your health you have nothing. So, hopefully something will happen for you so you don’t have to stress (which isn’t good for you) and can recover as best as you can. Working hard right now will send you right back in the hospital. So take it easy – some how, some way. I’ll look to seeing posts from you soon with good news?!?!

Binky,

You have done everything you can, the SSA is a slow bureaucratic mess. I recommend contacting your township, city, county or state, many offer assistance until SSI/SSD kicks in. If I can be of any help email me anytime.

Jerimy

Binky, do you belong to a church? most churches have a fund just for cases like yours, they help you with rent, food, clothing, utilities etc. if you don’t belong to one its ok, they still have the same help for anyone who asks for it. just an idea. hope your ssdi comes through fast for you. remember if you push it by going back to work against your drs orders, the dr who helped you file for ssdi, then you will put your benefits at risk also let alone pushing your body could very well set you back many more months on top of the stress you are under could double that outcome for the worse. take it easy and rest. i know exactly how you feel, it was almost 1 full year before i got my disability check, and we are still in a big hole financially, but it will get better soon(I hope).take care.

I returned to work last week after coming down with GBS in July. I was lucky, when i walked out of hospital after 7 weeks it was totally unassisted (and i had been completely paralysed). I consider my recovery about 99%. Even so, I found the fatigue after returning to work incredible. The work itself was not hard, but when i came home and sat down it hit me and my whole body felt like i had run a marathon. I guess what i am saying is I have very few residuals unlike most GBS people, have regained full use of my body and even so was surprised at how much work took out of me – and i am talking 3 days a week 9-3 at a desk and a 5 minute commute to work. I understand you are in a difficult situation financially, but please do not risk your health if you are not physically ready to return to work. I cannot imagine how hard daily living must be, let alone trying to work as well.

Do you guys have anything like unemployment benefit? We have all kinds of welfare payments over here … sickness benefit, unemployment, parenting etc which are fortnightly payments. I received a fortnightly payment depending on my partners income.

Hi Binky

sorry to hear about your struggles right now. To the best of my knowledge you cannot be evicted since you are disabled. I would look into it thru the fair housing commission or whatever it is called. Also find out about county help or something until your other help comes thru. There has to be something you can do in the mean time.

Here are some local resources for you:

The City of Salisbury has a variety of resources available to serve the needs of its population. Some of these include the Epilepsy Association, Department of Rehabilitative Services and the Deaf Interpreter Referral Service. Salisbury also has local offices for the Wicomico County Health Department and a full service medical center. For a more complete list of resources available, please contact the Health Department at 410-749-1244 or the Department of Rehabilitation Services at 410-548-7025. If there are concerns regarding possible human rights violations, contact the Human Relations Commission at 410-221-2565 or the Maryland Disability Law Center at 800-870-6362.

Another resource is the Lower Eastern Shore Committee on Employment of People with Disabilities, a nonprofit organization serving as an advocacy group for the disabled by providing services and programs that enhance employment opportunities and quality of life.

125 N. Division St.
Salisbury, MD 21801-4940
[email]mchurch@ci.salisbury.md.us[/email]

Michelle
GBS/MFS March 2006

You are definitely in a touch situation and you have to put your thinking cap on. I agree with you, it’s hard to stay healthy if you don’t have a roof over your head, and it ain’t exactly beautiful gorgeous whether on the upper east coast right now,so you definitely don’t want to be on the street. Like Fairly Odd Mother said a couple of posts down, you need to fight the eviction. The steps to the eviction process vary from state to state. I used to manage an apartment complex here in Florida where I’ve had to evict several deadbeats. I’ve also been on the other side of it as well, where I’ve prevented people from evicting me illegally. I would be willing to do foot work for you, if you’re ok with that. Let me know. In the mean time, make sure you have enough to eat. Contact the churches, like Angel said, they want to help. I know it’s hard to swallow your pride, but sometimes you really do have to put your heart on your sleeve.

Hi Binky,

Are your skills such that you could offer tutoring — perhaps in your home? Maybe in that way you wouldn’t become so fatigued – ??? — Don’t know that it would bring in much $$$ or provide the benefits that your job would provide though. There may be other home-based jobs to consider also. –????

Also, is there a handicap advocacy type organization available in your town — ??? — I also don’t think that you can be evicted under your circumstances — but I’m not a lawyer so I really don’t know.

I think the best idea is to reach out to a local church and accept their help. Most large churches have created quite a resource list and welcome opportunities to help in their own community. It is very rewarding for folks to help others — and you definitely need help.

I hope you can figure out a plan and I wish you the best…

Jann

Binky,

I did about a half hour of research (based on my own dealings with the state of washington) to find some resources for you. Here’s what I came up with.

Speaking as an ex-landlord and ex-resident manager let me tell you: it’s usually VERY difficult to actually evict someone. Most people leave of their own volition but if they want to stay, it can take months. Wrecks your credit but it’s a good worst-case-scenario. Here’s the number of the police person they call about evictions. He might be able to explain the process to you: Eviction Section Sergeant at: 240-777-7130.

Better way is to approach the landlord with your situation. Explain that you don’t want to have an eviction on your record. Is there any sort of payment plan you can set up? A lot of landlords would rather set SOMETHING up rather than go through the months of eviction work and then look for a new tenant.

Also, the U of MD has a graduate legal aid office. Call them for some free advice: Phone (301) 405-5807.

There are several resources in every state, although mostly the bureaucracy will wear you out. When you contact them, stress that you are going to be homeless any minute. Here’s a few resources I found:

****Emergency Housing Services (from the Dept of Social Services) [url]http://www.dhr.state.md.us/transit/pdf/homelist.pdf[/url]

****Asst. Dir. of Social Work Services & Prgs. Joseph Rando (410) 713-3907 (This guy should be able to tell you about some programs to help you pay rent/foodstamps etc. If you aren’t eligible for these programs, they’ll know about others, I’m sure, if you explain your situation.)

****For more information about the Homeless Women-Crisis Shelter Program, contact Tricia Joralemon at (410) 767-7297.

****For more information about the Service-Linked Housing Program, contact Tom Coplin on (410) 767-7182.

****For more information about the Housing Counseling Program, please call Tom Coplin on (410) 767-7182.

****For more information about The Maryland Emergency Food Program, call Kirk Wilborne on (410) 767-7015

****Temporary Disability Assistance Program (TDAP) provides limited cash assistance for disabled adults.
Benefits may also include eligibility for the Maryland Pharmacy Assistance Program and Basic Outpatient Medical Services under the Maryland Primary Care Program.

For more information about applying, call 1-800-332-6347

Where to Apply:
You may file an application by mail, fax or other electronic means or someone may drop an application off for you.
Apply online: Go to [url]www.marylandsail.org[/url] to file your application.

****[url]http://www.catholiccharities-md.org/community/samaritancenter.html[/url]
They’ll help you find other financial assistance.

hi seattlegirl,

long time no hear from you. how’s it going? take care. be well.

gene gbs 8-99
in numbers there is strength

Gene, I’m okay. Just worried about Binky, here. I remember how difficult it was when I was trying to get help, and my situation wasn’t immediate. At least in Seattle, if you’re about to be kicked out on the streets, they will move you to the top of the list for getting community housing.

Binky: If the state folks won’t help, start calling charities. The Catholic church runs a lot of good programs. I think both United Way and Red Cross would at least know where to point you, if they can’t help you themselves. I know your instinct is to find someone who will let you work asap, but without knowing more about your energy levels, I can only say I doubt it’s a good idea. Most of the people who are able to go back to work full-time find it VERY difficult to say the least. And they’re not including a two hour commute each way! If you’re determined to go back, I would at least talk with the principal there and explain that the fatigue is an unknown quantity at present. See if there’s the possibility of job-sharing or some such, so you could start out at part-time (or maybe a grad student who’s studying to do what you do as a teacher’s assistant?). Also, can I ask why you live so far away from your job? And is there anyone you can ask for help if, say, you decided to move closer to your job and needed a loan on the downpayment for first month’s rent and deposit.

Good luck and feel free to email me directly at [email]seattlegirluw@yahoo.com[/email].

Hi Binky,
You say you are a special education teacher, so do you work for the County or State. If so, don’t you have a disability program thru your public employees retirement system. Some of them say you have to be permanently disabled but actually they look at anything that is a year or longer. If at the end of a year or two years you are able to go back to work then they stop the benefit but if not then the benefit continues. You usually have to be reevaluated every year. Please check this out.

take care and god bless

sherry

Carolyn,

My heart goes out to you both. Here is a good book written by a member of this forum about GBS [URL=”http://www.amazon.com/gp/product/0595258239/sr=8-1/qid=1149968514/ref=pd_bbs_1/103-2019722-7048648?%5Fencoding=UTF8″]http://www.amazon.com/gp/product/0595258239/sr=8-1/qid=1149968514/ref=pd_bbs_1/103-2019722-7048648?%5Fencoding=UTF8[/URL]

It is a wonderful book, I got it even before I knew the author was a member here. Maybe you could read that to him and see how she dealt with everything. I am sure he feels very helpless and only comfortable when you are by his side. Is there anyone else who can either stay with him at times or handle your work back at home???

Also I forget, has he had IVIG or PP yet??

You are both in my thoughts and prayers.
Jerimy

[quote=gbwife]My husband is in his fifth day of being totally paralyzed with GB. The doctor says that he has an acute case. He has a stomach tube and has had a tracheotomy and is not breathing on his own. He has had his fifth and last at least for a while plasmaphoresis treatment. He tries to communicate with me by rolling his eyes.

Today I asked him if he felt he was getting good care and he blinked no. I asked when it was the worst and listed different times of the day and he indicated that night was the worst. I asked him if I should stay with him here in the hospital at night and he said yes.

He seems a little better for the first time today. His color is better and his hands and face don’t seem so swollen. He is feeling pain in his legs.

If any of you have been through what he is going through, please tell me what I can do to help him, and advise me about whether I should stay here and sleep in his room at the hospital. I have the care of his mother who has alzheimers and a farm full of animals to look out for. I’m the bread winner in our family and am taking my sick leave to be with him during the day. I’m driving two hours each day to come and go from our small town to the large city medical center where they have him.

Should I stay here with him at night and try to make arrangements for someone to stay with him Mom at home and take care of the farm or should I go home each evening as I have been?

What helps and what irritates when someone is paralyzed like this? He has refused music and television and being read to.

Carolyn in Nebraska (John is 60 and was in good health a week ago).[/quote]

Hey hun you hang in there God will work things out no matter how much u worry, it will all work out.
I always get scared when I get in that shape. So if he wants someone there, try to work something out if only for a day or 2. It really is hard to be alone in that condition. Constantly reassure him that the condition he is in is only temporary… It happens, but people survive and get better. 2 things frustrated me the most. The fact that I’m helpless, and the strain and pain it puts on my loved ones. It takes awhile to get over the embarrasment of bowel movements and such. Joke about it, bring it out.
Put a couple of pillows under his knees a couple times each day. That helped relieve my back some. Got to get him interested in something to relieve his mind. Its gona be a long pull, and u go crazy just lying there thinking. gotta have distractions or the time will never go by.
God Bless

Carolyn,

I’m so sorry you have to go through this with your husband. As a caregiver to my fiance last year, your situation sounds very similar to mine, except for the age (Ben was 37) and the mother to take care of. Ben absolutely hated the night shift nurses. He remembers one of them saying that she didn’t care if her lack of service caused him to die. You can always request that certain nurses not be allowed near your husband. Try to find out who the good nurses are on that shift and put in a request for them.

I didn’t spend any nights in Ben’s hospital room because when he was first admitted he told me to come home and get my rest. In hindsight, after he was released from the hospital, he said if he ever ends up like that again, he wants me there 24/7. I would suggest spending as much time with him as you can, but if you need to leave, then leave. Ben doesn’t hold it against me that I wasn’t able to be there with him all the time. In fact, he respects me more because I was able to go to work, manage the bills, take care of other responsibilities and make it there almost everyday to visit him.

As far as the music, etc., the noise probably hurts his head. It took Ben awhile before he wanted to hear any sound.

I hope your husband gets better soon!

Shannon

hi carolyn & welcome,

sounds like you have your hands full. find out what the nite problems are. that may help decide if you should switch from days to nites or whatever. neurontin for pain. take care. be well.

gene gbs 8-99
in numbers there is strength

Dear Carolyn,

I only read your post, not the others as sometimes I think the other replies influence my post.

I do vividly remember nights…………. They used to be a nightmare to me! The night staff was mininal, and I’m sure that is the case today in all hospitals. I did fear the night. My family would be gone, day staff would hand off, all the doctors, physical therapists and such like checking in would dissapear, all activity would cease, and unfortunately, I would feel the MOST vulnerable then. Everything would quieten down and I felt that if anything had to happen, it would happen then and I would be totally uncared for. As it happened, something did happen, After my 5th plasmapharesis, I had a reaction to the plasma, had a siezure, and because I was totally paralyzed, they could only tell that by feeling my face and ‘feeling’ the seizure. Behind the scenes the doc’s were there, had a brain scan and everything. That’s besides the point …… It is scary at night, I think you feel most vulnerable then, especially since you cant communicate or anything. I think, if at all possible, and thats a big IF, you could try and find out if it is because of the nursing staff that is neglegant, or if it is the same night fears as so many of us have, then that would be great start. If it is the latter, then maybe you could phone during the night, or try and work something else out.

Wish I could help you more! Please let us know if there are any other questions.

Now, I will read the other responses.

Thinking of you.

P.S I am editing this…… but I do remember at night, in the one hospital I was in, the nurse would curse me when the alarm to my heart monitor would continually go off. My heart apparently was affected by the fact that I could not pass a stool, and I was soooooo constipated that It was unbearable! Unfortunatley, nursing staff are often intollerant a lot of things, and this can be VERY scary.

if you private email me, I can give you my telephone number, or I can call you. I wish there was someone arround when I was in the ‘thick of things’

I feel silly replying again, as I obviously didnt answer you’r post properly …

I dont envy your situation, maybe if you could spend the odd night with your hubby it may help a little to aleviate his fear. I really feel for you having to be a caregiver to two people, and honestly, I think you are so very brave dealing with both these situations. However hard it its, please accept offers of help (I think I would find it hard myself, as I’m sure youare finding it at the moment), as I do not want to put people ‘out’. Once again, my thoughts are with you and your very difficult situation.

Ali, don’t be so hard on yourself. Your posts are always perfect.

Shan

‘Missed u Shan’

Hi there,

Right now, early on, still under the treatment phase, all he knows forsure, is you. You are his only safe comfort zone. He may have heard the words, but he doesn’t know the disease, what it’s done to his body, and what his future as a functioning man and the life that goes with it, will be. A lot to digest, to say the least. Exactly why I wanted my wife there 24/7. Throw in the healthcare, and the staff that goes with that, and frightning prospects crop up in a hurry. Understand that any healthcare facility puts it’s best face on during first shift. Count the RN’s on duty each shift, and pretty soon, you get the idea. I tell people all the time to make it a point when visiting a loved one, to do it around the clock, on different days, if you can work it out. Anyone else but me notice these places never lock their doors? Use other then the main entrance too. See how many call lights are on down the hallways. Observe where the staff is, and where the screams from patients are coming from, and you might observe some distence between them. Never go by word of mouth. It’s either in writing somewhere, or they are blowing smoke for the most part. For some reason too, the healthcare system can’t seem to have employees work a regular steady work week like the rest of us. The biggest frustration for me was the lack of consistency with their staffs. Just when you got a nurse you felt safe with, he/she had to take 7 days off, then work 3, then off 2. I must have had at least 130 differernt people paw all over my body during my 10 months.
Take into consideration that you will be at this at least a year. So finances and home life, you and dear ol ma, all got GBS, and that’s a big picture outlook that needs to be told, so you can properly make those decisions. There will be no sudden turn arounds, or all of a sudden back to normal stuff with this disease. GBS gives it to you all up front, and when the treatment phase is completed, progression is stopped, then it’s all recovery from then on. If he were to be just like he is now, 12 months from now, or still in a disabled state with needed care, can you survive? Don’t get me wrong, he could be walking around in 3 months too, but at least a year before life gets mostly back. Never take a wait and see appraoch with any vented GBSer, in my opinion. So, how you use your time with hubby, is up to you and only you would know what’s doable to set your life up accorrdingly, because you don’t want GBS to take away anymore then it has to. As ali said, try on a weekend first, or whatever, and observe the care he gets during different shifts, when his meds are delivered, time to answer call lights and so on, and after a week, you should have a good picture of the worker bee world and how good they are at not doing their duties. Didn’t take me long to learn the meaning of ‘be right back in 5 minutes to take care of that’, really meant ‘I’ll be back in 45 minutes to a hour and a half to offer up an excuse of why I forgot’, then still walk out without doing what I needed done 2 hours ago. Good ole night shifts. You have to do what’s best for the whole, not just him. I had to suck it up many times, because I knew my wife needed time to take a deep breath and relax. Keep us informed.

HI Carolyn,

My brother Frank is also on morphine and atavin. The atavin is really helping with the anxiety, keeps him calm and resting. That seems to be really working for him – I don’t think he needs the morphine, but they keep giving it to him – Frank’s problem is also the breathing right now, they’ve stepped him off the Ventilator and just on oxygen – but he’s had a couple episodes where he has trouble breathing – his pneumonia is still bad and he has a lot of congestion he cannot cough up – so that’s causing problems also. We’re still with him 24/7 – to keep careful watch over him. Frank has a great sense of humor also and thru all of this – still manages to mouth funny things to me. Try to remain as positive as possible and I agree, all the chatter with the groups of friends/family maybe can be moved into the waiting room. Here are some things that we did for Frank – we setup a video camera and had all his friends/family meet us at the hospital and tape video messages – 1 by 1. We’re going to transfer to DVD so he can watch it when he feels up to it. Right now he needs care….visits just wear him out. I also have had all his co-workers send me e-mails, I print them out and read them to him on “good days” when he needs that interaction. Same with cards, I wait until he’s feeling up to it, then I open the cards for him and he gets to read them, it makes him so happy!!!! John will have good days and bad days, unfortunately you never know when they are coming….I just take the good when we have them and enjoy every minute!!!!!
Stay Strong

Rose

Carolyn, sounds like you have a terrific friend helping out right now. That’s great!

Rose, I’m sure Frank will love seeing that DVD one day. I wish I had taken pictures or something of Ben during that time because it’s hard explaining to him why none of his old doctors, nurses or PT’s recognize him now.

You ladies stay strong.

Ali, missed you too! It’s great to be back!

racer, nice post!

Shan

Hi Carolyn
This is actually Julie, the wife of Bulline (Brad).
Brad got GBS on 11-20-05, and was also put on a trach tube/ventilator, stomach feeding tube. He was totally paralysed except for his big toe. I know the guilt you must be feeling when you cant be there with him. You cant be there 24/7. You have other responsibilities as well, that are also important, including a mother and finances. Brad and I were not married at the time he came down with GBS (we just got married a week ago), but it felt like we were. Since I worked and had to keep the mortgage payment going, I would go to work, then go to the hospital after work, until about 8pm, then go home. Brad’s mom, who does not work, would come and sit with him for part of the night. A couple nights, if he were really scared, she would stay all night. I still have some guilt from it, but Brad knows I couldnt stay 24/7 with him.
Just a couple of things to note:
1. Brad did not like his arms or legs rubbed, as it made the pins and needles feelings worse
2. atavan and morphine were a good combo for him as well
3. get a “message/alphabet board”. I created one. On one side, I put the alphabet, and that way we could ‘spell out’ words. some hospitals have these already created. on the other side, I had “key words” such as ‘too hot’, too cold’, feel sick, turn on tv, turn off tv, bowel movement, etc. I would go down the list until he blinked yes or no (one blink for yes, two for no.)
4. bring in pictures of family and friends and put up where he can see them. also bring in a picture of him to put up, so the nurses/doctors know what he looks like healthy. My husband was a big guy, and lost 90 lbs in the first month, so having a picture of him was great.
5. dont be afraid to say yes or no to the nurses. I had to tell one nurse not to put deodorant all over his body. she thought it would help cut down on the sweat.
6. ask family, friends, church associates to take time to come visit, even it it’s just for an hour, to give you a much needed break.

Please dont hesitate to contact me if you want to talk more.
julie

hi carolyn, i would keep track of how much and how long he will be on morphine. morph can cause the gastro system to slow down, it is also a depressor-i myself would not be using it while having breathing problems, it relaxes the muscles too much. i use neurontin,zanaflex and diazepam. this combo helps me relax enough to sleep, and takes care of the nerve pain. zanaflex is a muscle relaxer, not a depressor, it helps with muscle pain. take care and give john my best. humor and a positive attitude will help the recovery period. keep up the good work, and make sure you take time to care for yourself! 🙂

Hi Carolyn ~ for months I couldn’t stand “extra” noise, like TV or radio; and sometimes hearing a voice was very “grating” . It seemed like all of my available energy was needed for healing. And for about 6 weeks I couldn’t sleep with anything touching my legs ~ including a light sheet. It increased the pain so much! I am very greatful for having “found” neurotin (Rx) on these forums. Thank you all! Your husband will be able to communicate better soon. Many of his symptoms will be unique to him. Your biggest job is to continually reassure him. This is a wonderful Family. Keep asking the questions and someone will be able to help. Best wishes.

HI Carolyn ; I agree with Julie on all counts except the Meds I did much better with Neurontin and Diazepam Combo. Also I felt like I was on fire; not just hot but burnt severely !!! Even a sheet would bother me. And noises would bother me also. By the way keep the funny friend around she’ll be a real lift. LOL. I’m also a nurse ; you can request nurses you feel comfortable with at night to care for your husband. It may take you staying with him a couple of nights to figure out which ones but it will be worth it. Also accept help from friends and family. You really need a good support system especially now. And keep talking to all of us. Take care and you are in my prayers….:)

Another suggestion:

If you can’t visit or stay during the night, at least call him, and also call the nurses station to ask for a current (as of that night) update.

Make it obvious to the night staff that someone (you) is aware of what kind of care he is getting (or not getting) at night, as well as during the day.

Complain when you feel that the care is causing your loved one to be in danger or be neglected, and don’t stop until something is done to change the situation.

When my father was in the hospital, on the nights when I couldn’t be there, I would set my alarm to wake me up. I would call the nurses station and find out who was in charge that night, and who was caring for Daddy. I really do believe he got better care because they were aware that I was paying attention, even on nights when I wasn’t there.

Best wishes and hang in there.

Hi Carolyn,
I had GBS in the fall of 2005 and I also went from being fine to being on a respirator in less than a week. The atavan helped with anxiety, I was a wreck at the thought that I would always be in that state, thinking about my 6 month old, and I was all of a sudden very claustrophobic (spelling?). The nights were the worst because they were so long and I was by myself. I also couldn’t close my eyes so sleep was difficult. The morphine shots (and my doctor only allowed a few) were good for relieving pain temporarily and putting me to sleep. My body temperature was all over the board and I was very uncomfortable. After 7 weeks in the ICU (6 weeks with a trach tube) I went to rehab for 6 weeks. It has been 9 months since the onset and aside from tingling and numbness in my feet, I’m in pretty good shape. I was desparate while in that bed and humilitated at my condition. TV and such didn’t hold my attention and it was difficult to look at because the GBS caused double vision. The nurses had my mother go out and buy me high top sneakers to try to keep foot drop at bay. The sneakers would be on for 2 hours and then off for 2 hours. Although I was getting adequate oxygen, I would also pysch myself into thinking that I wasn’t. My family would do the alphabet game with me, going through the alphabet and I would give a slight nod when they got to the letter of the word I was trying to get across. Sometimes I would miss the letter (inability to focus) and they would have to go through the alphabet again.
It’s tough, I wish you the best. Constantly remind him that this is temporary and he will get better although he may never be 100%. I always “asked” when to my doctors, I think I frustrated them!

Hi, my uncle is another victim of GBS. He just went to the hospital 5 days ago. I really appreciate Ali’s post, about how scary it is at night. When my uncle was still conscious couple nights ago, he begged my aunt to stay there at night. “gbwife”, I would recommend you to stay there at night. Your mother in-law is important, but I cannot imagine the fear your husband has to go through. I know how fear works… When a person is afraid, time goes by really slow. Since the night is dark and he is suffering from the pain and the uncomfort, you are the one he trusts and can feel better if you are around. I felt so helpless before and I am glad that I found this forum. Everyone, if you know anything else about GBS or what the patients are going through, please, PLEASE, post them. All the information is helpful.