Stiff-Person Syndrome

[HannaBelle]

Does anyone have any experience with this disorder?

My MIL has been suffering with this disorder for several years. It is a very rare autoimmune disorder of the central nervous system that took several years to diagnose.

She is currently receiving immunoglobulin (IgG) therapy every 6 weeks, but she has been admitted to a hospital and is looking at moving to a rehabilitation facility. She is due for another treatment on Monday but, the hospital and the rehab facility will not administer the IGG treatments.

So, she has to get well enough to go home to receive the treatment at home but she needs the treatment to get well. Right now she is heavily medicated for the pain. She chose to go to the emergency room last week because her pain was so bad and she could not move. She is not able to transfer from bed to chair and she is not able to stand on her own. Usually she can do these things and has a scooter she uses to get around.

We are all feeling very frustrated and don't know what to do. My FIL is well into his 70's and is more than a bit overwhelmed in caring for my MIL. So, what are our best options here?

Sorry for the rambling, but I am honestly not sure where to even start to help my FIL. I think we are to the point that he cannot care for my MIL on his own, but he wants to keep her at home. He does not want to consider hiring a home health aide, but he is willing purchase durable medical equipment to help. He just started talking about buying a lift to help move her from her sleeping chair to her scooter and I would assume he will need one to assist in transferring her from her scooter to the commode.

How can I help him? What is the best way to go about finding a facility for her to help her gain strength to go home? What will he need at home and who can help us assess this?

 

[SueM in MN]

I am sorry to hear about your family's situation. I have heard about that syndrome, but don't have any experience with it.
This is a good link, if other people would like to read up:
http://www.webmd.com/children/stiff-person-syndrome

The hospital she is at should have a social worker or discharge planner; part of that person's job would be discharge planning. That would include appropriate places to discharge her to so she gets the care she needs.
It sounds like she would not be ready to go directly home. If she would be, the social worker/discharge planner would also help to figure out what services and equipment are needed, get the orders and approval for them and coordinate getting services set up in time got discharge.

Many counties have agencies that can help - possibly called Commission on Aging or something like that. It's also possible your county Health Department has services.
Different counties/states have different services, but they may be able to provide equipment or services, like Homemakers who could do 'home type' services like food shopping, some food preparation, cleaning, etc.

I'm not sure why the hospital could not administer the IGG treatments. That would be something to discuss with her doctor and her specialists who normally administer it.

The link I posted also had some website resources listed that might be helpful.

Good luck.

 

[WheeledTraveler]

If I'm understanding correctly, it's the rehab hospital that won't administer the IGG? That doesn't surprise me as much. I know the rehab hospital I was in definitely didn't have nearly as much experience with treatments for auto-immune/other long-standing conditions (vs. things resulting from an event such as stroke, TBI, or SCI). I was lucky that all my extra treatments were pills so they just had to order some they weren't used to. That said, there should be a rehab hospital out there willing to deal with IGG. Depending on where you are, there may be other options for a rehab hospital. That may be something further away than the rehab hospital they've already considered, but if it's what it takes to get her home, it could be worth the time there. It's not actually uncommon for people to go to rehab further away than the closest facility because some are better for some conditions than others or have more access to new technology, etc.

I do think you may continue to need to encourage your FIL to get home help in. I know it's hard since he's not used to the idea, but at minimum he'll need someone in a few times to show him how to use something like a lift. He may not be strong enough to safely transfer her in/out of one (I have no idea about the ages involved or his physical condition). It may also be time for your MIL to look at whether the scooter will be enough for her needs or if she needs to consider looking at something like a powerchair (won't necessarily help with transfers, but is usually easier to manuver in small spaces). Another DME thing that could help is a hospital-style bed. I don't know if it's something they could get covered by insurance (and the beds aren't cheap), but the ability to get the height right and position her better (there are really high-end ones that can actually tilt so that she'd pretty much be in seated position before being in the lift) would help. What does your MIL think of the idea of home help? She should get a say in all this (which is worth pointing out to your FIL).

I don't know if they're at all internet-savvy, but I know there are SPS support groups online for patients and their families. Those may have better advice than those of us on a more general board. If it's not something your FIL or MIL would be interested in, another family member could see if any of the groups are helpful.

 

[bopper]

You say he doesn't want to hire a home health aide and he will buy Durable Medical EQuipment...I wonder if he thinks he has to pay for everything out of pocket? Like another poster said, the discharge planner should be able to help him determine if there are other ways (medicare??, Long term care insurance, health insurance) that can help with the medical costs. Also they need to make it clear that he needs some help or she won't be sent home. Don't fall in the trap that FIL can't do it, doesn't want outside help, your DH has to work so that leaves you.

 

[porterkity]

I am not a doctor, however, I also have a rare disorder that affects my muscles.
You may want to ask for a patient advocate specifically a medical / navigational advocate while she is in the hospital.

If she hasn't seen one yet she needs good neuromuscular specialist.

You mentioned she was on pain killers but has she been given any muscle relaxers or GABA inhibitors like Baclofen? It's my understanding Stiff-person creates spasticity. All the pain killers in the world didn't help me until my muscles released.

For your FIL: Often folks who have limited resources or are too proud to accept help from a service will accept visitors and help from their church or synagogue. Church Deacons, Eagle Scouts, Senior Girl scouts all have community service hours they have to put in. Even if its some one to come over with a covered dish once a week and chat. That extra visitor can really make a difference. It's a win-win situation.

My last bit of advice may or may not help so you are welcome to take it with a grain of salt.
Doctors, Nurses, and specialist are just human. And while i'm sure most have the best intentions, I (along with DH) have had to become an expert in my own care. Whatever hospital or doctor see I will likely be the only person they have or will ever see with my condition. I live with my condition every day, and there have been times when I have had to remind my doctors of this. A good doctor is a partner. I have walked out of more than one office because a doc was unable or unwilling to admit that they weren't sure or just didn't know.
So here is the advice: Don't let doctors bully you. The hospital better have one heck of a reason to withhold medication that a specialist prescribed. Otherwise, pain or no I would find a way to transfer to a different hospital.
Be courteous but firm.