Questions for USA PSP caregivers

[Babowen898]

Hi Everyone:

Another couple of questions:

1. Hubby has orders for PT, especially for balance and stamina. Are PT's specialized in the USA, or how will I know who to set him up with? Should I just call around and ask?

2. Many of you talk about care in the UK. For those in US, what help is available? Medicare is not covering everything, and I know we will need more services soon. You talk about evals and people coming in - sounds like the UK is much better about helping with in-home care. What do I need to do now to prepare? Who do I need to talk to, how do I get ready financially for help in the USA? Wheelchairs, bath chairs, all the equipment that will most likely be required - is there help available? I bought him a lift chair, and it is being delivered Oct 17. Paid out of pocket. Is this what we are facing in the US?

I have learned so much from all of you, and am thankful for this site. God knows, the Dr's don't tell you anything about what is coming or what you need to do to prepare financially, physically, or emotionally - patient and/or caregiver.

This is a pic of us in Beijing, China in 2015. Our youngest daughter lives there, so we went to visit her and her family. While we were there, our very first granddaughter was born! We have 5 grandsons, and are so grateful for them all!

[abirke]

Well praise God for grandchildren, They'll get you out of the house eH?...All the way to China!

After diagnosis...we started looking for agencies who could help us..this is what we found

The first thing we did (I'm from Arkansas) is talk with Social Security. We (thanks to my son with more savvy than I) receive disability,...i'ts very little but it pays the bills.

Next the Dr ordered Home Health Care this gave us access to PT, OT, Speech...This dr also ordered the wheel chair and numerous drugs my husband first started and is now done with.

Inbetween all of the above we looked into Medicaide, after I had to quit my job to be with my husband, we had no insurance. We were on this until we got on an insurance (ObamaCare) when he turned 56(?) I think they automatically switched him to Medicaire...and that is where we are now. We were able to keep our house and cars (now car) and life is a pittance but it's good. Luckily the blessings of God can be rich for everyone...and it has been...even if I don't feel it at times...when I can set my feet straight I remember what B and I have Looked to all our married life

this is a very generic summary of the things we have been using from our gov't. another place to go is Area Agency on Aging...They have helped us wiht serveral things and I really do appreciate them...infact it may have been them or combo of them and HomeHealth Care who found a teenage mission who built ramps for those in need! It is very nice headed by adult builders so it was made very well....

Churches are always a good source but I certainly would start with social security and medicaid or medicare and you dr.

Goodluck

AVB

[notentitled]

Hi Babowen, is your husband seeing a movement disorder specialist (neurologist)? My husband was 1st diagnosed with Parkinson's and there is specialized therapy for movement and speech called Big Step and Loud SVT. Your Dr should be advising you on where to go. If your husband is home bound, as my husband is now, they will come to your home. Your p/t order should have a diagnosis for PSP or Atypical Parkinson's syndrome so you have a therapist that deals with these. Unfortunately Medicare doesn't cover caregiving. If your husband was in the service you can check with your local VA. They have assistance you may be able to utilize if you financially qualify. Our Dr told us my husband is eligible for hospice, where one could get more assistance since he has an incurable disease, but you must sign a DNR which my husband is not about to do. There is in the US a website called Cure PSP that you can sign up for a webinar that meets once a month where you can learn how to deal with things that others have experienced. I have found this site and Cure PSP to be invaluable in so many areas especially when your Dr says there is nothing they can do for you and see you in 6 months unless a crisis arises. I don't post very often but am on daily and find comfort in knowing I'm not alone in how I deal and feel with this terrible disease. I am very thankful to everyone that share their posts with us. I send everyone a big hug and good feelings!!

[abirke in reply to notentitled]

Hey NE, AVB here. I am a fellow USer! Infact we have just been regiven Homehealth care and they were just was talking about Big Step exercise program. He might get B started on this program...I am looking forward to it. I have never been able to get on the webinar of CurePSP.org, is it good?do you feel like they have same camaraderie as this site does? not that it's a contest...just wondering if im missing stuff i could be sharing or gaining! At any rate, I am glad you posted...If there is ever something we need to know that we don't seem to be getting...please feel free to enlighten....love CurePSP too!

AVB

[notentitled in reply to abirke]

Hi AVB, my husband was in the Big Step program right after his Parkinson's misdiagnosis and when he was mobile. It was worth doing since it helped him to take larger steps instead of shuffling and concentrate on what he was doing. Of course if you don't continue the exercises religiously it's benefits are minimal. I'm sure many experience how their loved ones are more responsive with everyone else but for us it can be more difficult to get them to do what we ask. I feel any assistance is worth a try even if the benefits are minor. This disease is so unpredictable where you don't know how things will be on a day to day basis. If they are offering the speech p/t also I would advise even if there aren't issues now. I must say I am on this site daily and will go to Cure PSP seldom. You don't have to join unless you want to post on Cure PSP. When you go to the site go to the menu, then support section where you find online support group, they have one for caregivers and one for person with PSP. If you register they will send a reminder via email and then on day of webinar a link. Sometimes you get ideas on how to deal with situations and then other times it may seem like a wasted hour but I still try to attend when I can. I prefer this forum much more because for some reason I feel more connected here. I hope B benefits from Big Step and if you do participate at the next webinar I would like your feedback. Take care.

[abirke in reply to notentitled]

I did register to CurePSP.org, they did email me times, but I never could get connected! Operator Error I am sure! well I am looking fwd to what this new PT has to offer and hopefully it will benefit Bruce who was not in a wheel chair with the first PT. He is in wheel chair now but can also walk! I hope he is not just copping out on trying to stay on his feet....He is so resigned to it all sometimes I wonder if he does not have a bit of depression....and why the f876 not ! he has most of his cognition and yet his body is wasting away.

well today is a weird feeling. My daughter left for England, Dorset...a forest down yonder...beautiful architecture these fwd minded kids have about future housing etc...she's not an architect but met one....need I say more....pray for my baby that she is safe....course she is probably safer in the UK than in the US...

AVB

[Christine47 in reply to abirke]

I had a similar problem when I signed up with CurePSP three years ago. Very frustrating. I ended up dealing with a Bruce Janele [e-mail]. I don't know if he is still there. I was really frustrated with them, but somehow it got straightened out. You are not the problem. It is their program is my guess.

[abirke in reply to Christine47]

Well It's nice to know that maybe it wasn't me. I do like CurePsP.org they have lots of good info . Even called the head of the thing about something and they answered!

Let's hope we have better luck if we ever delve in to their online mgts in the future

AVB

[Babowen898 in reply to notentitled]

Thanks for the info! He is not a veteran; is on disability, which is a small amount. Thank goodness for my retirement!

His dr is a movement disorder specialist. We recently switched to this new dr because we were not able to see his former dr when needed. We drive 2 hrs to this dr, but feel we have found the correct match. He participated in LSVT for 4 weeks from mid-April to mid-May. At that time he was doing fairly well and saw improvement with the 4 day a week therapy. He had OT on two of the four days, as well. We had to drive about 45 minutes for the therapy, but did it with a smile because it was helping. Shortly after he finished, he had a sudden downward spiral. And he remains at that point. We were told that PSP can do this. We are in the learning stages, and still hoping he has been incorrectly diagnosed. He will get an MRI in February, so maybe that will give some useful info. Thanks again for responding! Best wishes to you.

[goldcap in reply to Babowen898]

B, If you are working with a neurologist you can have them prescribe various things such as walkers, wheelchairs, crash helmets, lifts, etc. which you then submit to Medicare. They will only cover on of each item so you have to chose wisely. (Weighted walkers are helpful. Its called a U-step). The problem is it can be a time consuming process. Take it from one who delayed I suggest applying for things before you actually need them. I know it is depressing and discouraging to apply for mobility aids early on but you will be glad you did. If not you end up paying out of pocket and having to submit paperwork and hope to get reimbursed. And sometimes they cover an item such as a manual lift when you want a power one so you split the difference. We have had therapy both ways. The long drive and the show up at our home kind. The home therapy was ordered by the doctor on discharge from a hospitalization several times. Unfortunately caregivers are not covered. When you get to the end of your rope and need help it will cost you between 15-25 pr hour through care agencies and independent sources. If you have Medicare I suggest AARP supplement plan. It picks up everything Medicare does not. But not home health aides unfortunately. You mentioned you are hoping for a misdiagnosis. Has he had any eye issues. That is usually the tell. The,"supra-nuclear in PSP is the muscles surrounding the eyes. Eye movements, and inability to blink can cause sever dryness and problems early one. Until the eye symptoms kick in PSP can mimic other neurological disorders. Hope some of this has been helpful to you and good-luck!

JGC

[notentitled in reply to Babowen898]

Sorry to hear that LSVT helped temporarily. Wondering what your husband is experiencing at this point and if he is on disability through Medicare. I agree with goldcap requesting prescriptions for things that are currently needed and that you chose the correct ones. Received a normal walker when I should have gotten the U-step. Medicare will reimburse for these but the basics only. Go on Medicare website to see what the requirements are to qualify for reimbursement. I paid for most items out of pocket. I could use a hospital bed since I have to assist my husband to sit and stand from a lying down position but PSP doesn't qualify him for one. I installed a pole that he can grab onto by the bed to help get him up. Once he doesn't have the strength in his legs and the fact that he is heavy which would make it impossible for me to be able to utilize a lift, I would need to place him in a facility. Diagnosing any atypical Parkinsonism seems very difficult and until you are advanced in the disease one might then get the proper diagnosis. There are no definitive tests to say what it is. You'll probably figure it out before your doctor does. Take care.

[Babowen898 in reply to notentitled]

Thanks! I need to clarify about exercise. He has three machines that he uses on a daily basis: weight machine, elliptical machine, and a bike/rowing machine. Sometimes he exercises twice a day, so I feel that he is getting adequate exercise. I know this is helping. It's the balance issues that seem to take a toll more than any other problems. He manages the incontinence with Botox and catherization, so that's not a current issue.

You guys are amazingly helpful! Thank you for taking us under your wings!

[mamaw1965 in reply to notentitled]

I would check again about the hospital bed. Mom's Dr. prescribed a hospital bed and Medicare is paying for it.

[Christine47 in reply to Babowen898]

Beyond lack of eye movement, another diagnostic sign is the hummingbird (or penguin) pattern of the brain stem/midbrain atrophy.

I found some BIG and LSVT YouTube videos on line. But we also use both our GP and Neurologist for referrals for PT and I want to sure they keep saying he is benefiting. It does make a difference. I think it does slow the progression.

[Babowen898]

So helpful, JGC! We are newly covered with Medicare and trying to "learn the ropes." Right now he is walking with a cane, but still stooped forward and losing his balance. Dry eyes are a problem, with light sensitivity, especially at night. Vision has decreased quite a lot, and trying to read a rule when measuring is virtually impossible. Of course, he is not able to do much in his woodworking shop anyway. Your info is very good, and I plan to make a detailed list of these things for next Drs visit. Thanks again! Where are you located?

[blackhill]

We are in the US also (Al and MO). My husband was diagnosed with psp in 2015. Agree that sorting out services and when to start services is a challenge. Even though not accessing hospice at this point, I found the best advice and info on resources from talking to a hospice chaplain. I also investigated palliative care teams but found the expectation as described was not the reality. I had thought a multi disciplinary team that could connect with us through this journey sounded like what would be ideal but found they were limited to cancer mainly and / or connected to a hospital stay. But you might investigate in your area as it may be different.

[Babowen898 in reply to blackhill]

Great suggestion about hospice chaplain. And I have a good friend who works for hospice so I can start with her. He is not ready for that yet, but I need to know where to turn when/if the going gets rough! Thanks!

[LynnO]

Hi Babowen,

My husband has PSP and we are also in the U.S. We have found out that Medicare doesn't pay much as far as in home care, in fact I think none at all.

But they will pay for Physical Therapy & Occupational Therapy. On the lift chair, you shouldn't have to pay tax on it. They used to pay for the motor, not sure how they decided what to pay, but I've been told they don't do that any more. They will pay for a percentage of a wheel chair, we're not there yet, but I would imagine your dr. will have to write a prescription for one. The shower chairs, depending on the type you buy, aren't very expensive. We bought one for $30. There are all types to choose from. We also bought something called a bed cane. It goes under your mattress, and your husband can use it to pull on to help roll over and steady himself while standing next to the bed. We have found that's one of our best purchases. If you need a U-Step walker, Medicare should pay for some of that too. (with a drs. prescription also.) I have read that when it comes time for palliative care/hospice they will supply everything you need free if charge, hospital beds, commodes, etc. I'm hoping that is a long way off. You can visit CurePSP.com and get information to print and give to physical therapist. It will tell them about the disease, and what is helpful. I did that when they worked with my husband, and they found it very helpful. Your Dr. should/might have recommendations for PT.

Wonderful picture of the two of you! Love the Sprite and Coke cans! : )

Keep traveling while you can. We waited a little too long and took our last vacation this past summer. We had some challenges, and cut the trip short, but we're still glad we went.

Take care,

LynnO

[Babowen898]

Thank you so much for the valuable information. I looked up the bed cane, and can't wait to get one for my hubby! This is just what he needs for getting in and out of bed, as well as moving about in bed.

We visited our daughter and family in China in April 2015. Pic was from that trip. He has digressed quite a lot since then. And we just returned from a trip to the Outer Banks (NC coast) with friends and family. We were blessed beyond measure to have so many people helping with him. He is very touched by the kind gestures others show towards him.

[horseandwolf]

greetings from texas. i was diagnosed last october with psp. my neurologist first diagnosed my condition as ataxia, bet sent me to dallas at ut soutwestern medical school. dr there diagnosed the pcp. physical therapy was prescribed but my doctor in dallas wanted me to find someone who had experience with neurological conditions. luckily here we have a institution that deals mainly with children but when i contacted them they were eager to take me in even though they like others had never heard of psp. before my first evaluation the therapists had learned what information was available. they developed a plan for balance control and strengthing and it has worked quite well. i am down to therapy once a week and am much better in control of balance although i get fatigued through out the day. i considered myself to be somewhat stable using just a walker for now, but therapists advised me a wheel chair is in my future. generic sinemet was prescribed for my tremors and seems to be working well for now. i have fallen a few times but nothing serious. i see my local neurologist every 2 to 3 months and i have an appointment with neurologist in dallas in july. worst problem is pain and cramps in both legs, muscle relaxers help some. good luck