I am a CNA in a nursing home with two Huntington's patients, both end-stage. I am extremely frustrated with the lack of products to protect Huntington's patients, and the lack of acknowledgement that such products are needed.

I have grown to seriously hate the special chairs such as Broda's. I have found our residents with limbs or even necks stuck in the gaps of these chairs. The webbing gets stretched out and makes the chairs lack back support or forces the patients to lay in an unnatural arched-back position. The safety belts that wrap only their top thighs are beyond cruel if you ask me.

Frequently the casters and brakes of these chairs breakdown, and the handle-releases for repositioning are both inadequate (chairs never hold position) and also frequently break. In addition, we have to position the chairs in doorways, because the patients' movements cause the chairs to list and they can bang their legs into the wall if they are next to a wall in the hallway.

Why use this chair? Because there is virtually nothing better, and lots of products that are worse. Restraints are a dirty word in our field these days, so none are being developed to protect patients who need them for safety, or so it appears.

Try to find an honest discussion about the perils of end-stage Huntington's. I have gotten no farther than two widely reproduced articles that define late-stage as when you "encourage patient not to get up at night alone" and "provide opportunities to walk with assistance several times a day", or that a chair with a deep, slanted seat is recommended, but try to discourage restraints.

The stage of Huntington's I am discussing is well beyond choices and modifying behavior. Truly end-stage Huntington's patients are in danger of flinging themselves out of chairs, rocking themselves into a perpendicular position in bed, wedged between the parallel fully padded bedrails, and worse. We desparately need families and doctors to acknowledge the risks that befall these patients, and to strongly advocate for more effective, safer restraints.

Jodee - I understand your point. When my mom was at that point - she was never without her pink helmet and the nursing home put her box spring and mattress directly on the floor. They also lined the walls and floors with thin mattresses. My mom was fairly mobile and alert even at the end and they wanted to make sure she was safe if she fell. They had moved her close to the nursing station with a private room that was lined with mattresses. It worked well for her. I could not picture her having to be in those chairs with straps.

I really have no ideas or suggestions, just that I understand your frustration and wanted you to know what we did for my mom. Maybe it could help someone else.

Stacy

Jodee,
All I can say is thank you for caring. Any suggestions you have would be appreciated. Sometimes it feels like the "care givers" in homes don't care at all. It is great to hear your side of things.
You are a wonderful person for caring so much to take the time to read sites like this!

Also, thank you for caring.

Jodee,

What nursing home do you work at and where is it?

Whether on not you hate BRODA chairs is unnrelated to the problem. Hundreds of families have purchased BRODA chairs at their own expense for use in their home and are perfectly satisfied with them. In fact, they recommend them to other families.

I have had the opportunity to know over a hundred people in the mid and advanced stages of HD. I can report that, as a group, they find them very comfortable and, in several cases, liberating. I know that for many residents for long periods in the course of their HD with the consultation and prescription of a skilled physical therapist, there is "virtually nothing better" because it is a very fine match to their needs.

Calling the lap or waist belt cruel is simply foolish. If it is applied properly and the resident is adequately monitored and repositioned I can't imagine it being cruel in any way.

If any one is seated in a BRODA chair with an arched back then the chair is in poor repair. The stretched straps are usually easily tightened with a hair dryer or replaced by your rehab department. The nursing staff, rehab department and you are obligated to address this condition and problems in the care planning process. It is a positioning, safety and care issue but it is not a chair design issue.

I also assure you that if legs or arms are caught in the straps or are hanging out then the chair doesn't fit in the first place AND no one is adequately supervising these disabled residents. This is a nursing care and supervision issue, not a BRODA chair issue.

You need not point out what end stage HD looks like. We know too well. As for resources you need to look harder or ask more questions. I don't believe we need to advocate for better restraints. In most cases I believe we need to advocate for more staff, better trained and truly supervised nurses and aides.

I would be glad to help if possible. Please have your director of nursing or administrator call me at 413-243-2010 here in Western Massachusetts.

BRODA chairs have made the experience of enduring theprogression of HD a significant bit more tolerable and certainly more comfortable in seating. To let you trash them without responding would be doing a disservice those with HD who would recommend them to those about to begin their HD journey.

Jimmy Pollard
Laurel Lake Nursing and Rehab Center
Lee, MA

Jim,

That was a great response! I was thinking of you when I read Jodee's e-mail. Then when I scrolled to the end, there you were. I hope Jodee gives you a call.I think my brother had a Broda chair and it worked well. We had bought it for him and had it repaired when necessary. The staff at his nursing home provided excellent care and attention.They used a restraint that he wore it like a vest and it tied to the chair and worked well.It was gentle but helped him remember noy to try to stand.

I would be interested to know if Jim Pollard has had this experience with a patient and a Broda. I met Jim in Kentucky when he and his staff conducted a seminar. I don't know if he remembers but he may remember my daughter who was an advocate for HD for several years. Her name is Robin and she is now a physical therapist. Another daughter is in the advanced stages of HD. We have a Broda Chair at home and also one at her day health care. All of a sudden she refused to sit in it at day care and that has carried over to the one at home. I love the chair and she did also. I don't know if something happened ar day care or what but the director is very supportive and fond of her and is trying to encourage her to get back into it. So far when she does there is resistance and screaming. She has also resorted to screaming about a lot of other things. She is refusing to wear a jacket although it is getting cooler. There are some other issues so I don't know if this is a part of something going on and refusing to sit in the Broda is a part of that or if the Broda is a separate issue.

Anna

Bear with me, I am learing how this forum works...

I am a sales representative for Broda Seating (on the west coast) and my mom was in a Broda Chair, so I wanted to make a quick comment on Jodee's post regarding the Broda Chair. I have seated many people with Huntington's Disease in Broda chairs (in both home and nursing care settings) and in so doing have increased the patient's comfort and eased the burden on the caregivers. In every case, I have also witnessed a lessening of the strain on the family. I think Jim Pollard's words are very accurate - the chair is a tool, the caregiving stems from the nursing care facility. If the chair is properly fit and padded, then you will see an improvement in seating and postitioning and outlook. If you don't see an improvement, then either it is not fitted properly, not being used properly, or it is not the proper piece of equipment.

The primary reason I wanted to respond to this post is to recommend another product. I have now encountered three people with Huntington's Disease, with aggressive chorea, who did not do well in the Broda Chair. All three of these people did very well in the Carefoam Lounge chair. (View it at www.carefoam.com/products). It is essentially similar to a foam wrapped bathtub. It safely cradles the individual and seems to have a calming effect (perhaps because it defines the boundaries and nestles them safely in the lounge trough? I also think it gives them a degree of "freedom", meaning it can reduce one on one time if it is working well).

Another solution that I have witnessed (and found very impressive) was in a facility in Washington State. They had a resident with Huntington's Disease (the facilities first encounter with the Disease). The woman had severe chorea and would fall out of her bed. The Rehab folks at the facility bought a blow up pool with an inflatable floor (the pool essentially filled the room) and the resident hung out and slept in the pool. She loved it because she was protected on all sides and couldn't get hurt and she regained some independence. It was a lovely solution that kept her safe and active.

Lastly, I want to add that I appreciate Jodee's post because it demonstrates that she cares. That is the sign of a special CNA. Thanks.



Edited 2 time(s). Last edit at 03/26/2010 08:26AM by BarbandBeulah.

Hey, B&B - Wow! Like a giant, inflatable "play pen"! What a clever solution!

jl

My mattress and box spring are on the floor which is getting harder to get up. I have a arm on the bed. Ross and I just broke those bed frames...but when we were living in the motels I noticed getting out of bed was easier but the dog could not get that high so we built a chair step for her.

There is one wheel chair which takes you from sitting to standing and that is the wheel chair I would use if I ever needed one.[www.levousa.com]



Edited 1 time(s). Last edit at 03/26/2010 03:01PM by dustyblues.

Kim is not in a NH yet, but she does have a Broda and we got her a Pedal Rocker
[www.brodaseating.com]
it's the one with all 4 small wheels.

I don't understand how the straps can stretch if the seat covers are used. We got 3 seat covers and I wash them at least 1x a week.

I looked at the other web site and those chairs looked pretty nice also except I hope the covers are washable also!

Joe's mattress is on the floor also surrounded by pads and yes, he may be end stage but he sure does want out of that bed!

The solution they used for my wife falling out of bed was to get a bed that was only 14" from the floor, and pushed it all the way up on the wall.

Has anyone watched private practice? There is a character in there with the coolest wheelchair ever, takes him from sitting to a standing position... it's so cool.

If anyone wants to I can grab a screen shot or something.
Laura

~ Laura Q.

That is the wheelchair I put the web for

Sorry dusty blues, I missed the link. that is the SAME exact chair. Color and everything. COOL!


I think that's awesome technology. Along with HD in the family I have an uncle with Spina Biffida, was paralyzed from the legs down from birth and then 10 years ago the dumbo driving his van for the group home got in an accident. She panicked and left him hanging upside down in the van, the wheelchair had not been properly secured....and called her boyfriend in a panic rather than 911.

Now, he is paralyzed from the neck down and had a tracheotomy for 5 years. My uncles and grandmother were told they couldn't sue anyone over this. (I think that is complete Bs) It caused a huge fight because I thought someone should be held responsible. Let them get money, and blow it-- Spend 50,000$ on having Aerosmith give him a visit. Something completely ludicrous-- but would make his LIFE.

But, nooo. They talked to one lawyer and gave up. Poo.

~ Laura Q.

I know this is a bit off topic, but in such cases of major chorea, shouldn't a person do all they can to get chorea under control with medications? Yes, in some cases, meds do not work, but I would like to know what percentage of people that meds will not work.



Edited 1 time(s). Last edit at 03/28/2010 10:18AM by Dave.

I have not had to deal with "major chorea". I would say yes to that Dave. The question has been when is someone treating chorea for the sake of the sufferer and when for the sake of caregivers? NH's prefer medications as chemical restraints in some instances. Moderate chorea is where things get rocky and where many sufferers are in terms of chorea. The chorea is noticeable, and fairly constant and rather disturbing to see, but the pHD is not particularly disturbed about it. That was one of the arguments at the TBZ hearing. For most doctors the choice of chorea control comes down to TBZ or no TBZ. Beats me the answer to that and where the threshold for using it is. My personal fear is that for now it is being used wisely but like all medications the scope of use widens and widens. We now give prozac to dogs... boob jobs to 16 year olds etc. I could get TBZ for T with a little insistence. At one point I could have influenced T to feel she needed it also. But I never brought up her chorea. She has never mentioned it. She only on occasion mentioned her walking was difficult, and she was aware her eating was messy. TBZ wasn't available so it was just a fact of life. She adapted fine and so did I. Whether adding another anti-psychotic to the mix for chorea's sake I think would have been pretty questionable. I am almost glad it wasn't an option for me. I did support it's approval for those who had it worse.. and fully expected some people would use it out of pure comfort to the sufferer.

I also agree with Jimmy... adapting thought before equipment is more reasonable. There will never be an "HD Chair" ... there can be proper HD care, which can use existing equipment properly. If a part wears out on a chair.. it has to be replaced.. it's that simple. They could make a chair out of concrete that never wears out but the comfort would suffer. Fit and repair come with the territory. HD is rough on objects. It's just a fact... add that to daily wear that anyone inflicts on objects and yes... the maintenance man has some work to do.

Do you guys know this thread is from '05, and a broda chair sales rep brought the thread back to life? lol lol lol

So it is Barb, I didnt even realise that when reading. Well spotted!