PSP experience with Kaiser

[Sfen]

Has anyone had any experience dealing with doctors at Kaiser Permanente treating PSP.? We are in California and would like a more knowledgeable Doc.

[enjoysalud]

I HATE computers. I wrote you a long reply and then it disappeared.

My son died of PSP on May 4, 2017. He was DX with Parkinson's (not Parkinsonism) by Dr. Joseph S Chung on Jan 19, 2015 of Sunset Kaiser. MY SON HAD KAISER INSURANCE HIS ENTIRE LIFE. We/he lived in the San Fernando Valley of Los Angeles. His first symptoms appeared March of 2014....DOUBLE VISION, SLURRED SPEECH, HEAVY FATIGUE. Kaiser did every test imaginable including a DATSCAN and sending his DNA out of state for an evaluation of FTD-ALS (c9 orf-72). The DNA/GENETIC test came back negative.

He chose Dr. Marko Petrovic of Woodland Hills, Kaiser to be his neuro. On a referral by DR Petrovic to Dr Enos of Sunset Kaiser he was re-dx with PSP on January of 2017.

My son died after having a PEG installed following his 2nd bout of aspiration pneumonia (at that time also discovered he had sepsis). Five weeks AFTER THE PEG he continued to rapidly decline. HE REQUESTED to NOT be fed. At the time of his death he was on Hospice (prior on palliative care) with Kaiser.

THE BIGGEST COMPLAINT I have with Kaiser is that my son requested a referral to UCLA medical center. His PRIMARY DOCTOR refused the request. Now that I am more sane, less crazy with anguish, I hold myself responsible....I did NOT appeal the denial. I had that right, and it probably would have been granted. My son paid out of pocket for a consult by UCLA. The consult was done July 16, 2015 with Dr Joseph Farag. Dr Farag said it was too early to give a DX but it was definitely ATYPICAL. Looking back...... maybe that denial was a blessing in disguise.

PSP is very rare....and I believe a majority of Neuros have limited, if any knowledge of the disease. I always recommend that JIM BOWER, Mayo clinic, be watched on YouTube.....MAKING A DIAGNOSIS OF PSP, CBD, OR MSA. I found it very informative as to why the challenges of DX.

Presently all that can be done is to treat the symptoms (that was done for my son....BOTOX, LEXAPRO, relaxant creams for his neck, ETC ETC ETC.) To have a DX offers no medications to slow or stop the progress. We had many a visit to KAISER URGENT CARE for sudden symptoms.

I miss my son terribly, but I am grateful that he is not here suffering. I am human and like most of us It is VERY difficult to accept that IT IS a terminal illness, and that with that DX of terminal one only stays on a plateau for a limited time. The disease marches on.

THOSE OF US ON THIS SITE ALL PRAY FOR A BREAK-THROUGH, and I think (like my son) believe WE WILL be the one to beat it. Eventually that MAY occur, but for the present it has not.

I suggest that if you have Kaiser and are near a research medical university such as UCSF or UCLA you ask for a referral. UCLA offered two clinical trials, BIOGEN and ABBVIE. Clinical trials give me HOPE.

My son had severe constant pain from dystonia of the neck. He couldn't move it and had to have a high back (sometimes used a towel) chair to support it. At the end he was near blind, he couldn't talk (communicated with his thumb), very constipated, lost the use of all his bodily functions, drooled, needed help to get up and down from a chair, suffered a seizure, etc.... .... after that 2nd bout of pneumonia it accelerated quickly.

I'm sorry the picture I paint is so bleak, I wish it wasn't. My son was a few weeks from 52 when his first symptoms appeared and 5 weeks past 55 years when he chose to NOT BE FED.

You can read my post, PARKINSON'S TO PSP, by clicking on the circle next to my name. It will lead you to my posts....scroll down to the title I gave you.

There are those on this site whose loved one is going on 6-8 years, and others, like my son, who lasted a bit over 3 years.

Each day, do as I do, and pray throughout the day for some research scientist doing research that will lead to a medication to slow the progress and help those afflicted to a better quality of life.....and then LET THERE BE A CURE!!!! If you do not pray....send out positive thoughts.

Blessings and prayers..............Margarita, Los Angeles, CA, USA

[Sfen in reply to enjoysalud]

Thanks for your very informative reply. I am so sorry for all you and your son have been through. I hope you will remember the good times you had with him. My husband was told he has PSP last Oct. Kaiser Doc. trained at UCSF, only does the diog. then sent to Neurologist who has no experience w/ PSP. and said “ we can’t do anything for you”. He was told that “you will not die from this” so refuses to learn more or look for additional help. Only symptoms now falling/balance, and very slow movements/ walking and bowel problems. I was hoping that there might be a Kaiser Doc. Near us who knows more about what to expect and could help as symptoms come up. I am trying to learn all that I can to try to prepare. Thanks again. Sheri

[Caro2132 in reply to Sfen]

We are in San Jose and we don’t have Kaiser but go to Stanford Movement Disorders Clinic. If that’s not an option for you I would suggest you contact Robin Riddle at brainnetwork.org. She is very knowledgeable and could help indicate a doctor with more experience in PSP.

Good luck

Caroline

[rriddle in reply to Caro2132]

Hi there! It's Brain Support Network, brainsupportnetwork.org.

[Caro2132 in reply to rriddle]

Thank you for the correction 😊

[enjoysalud in reply to Sfen]

Hi Sfen, glad I was helpful, and YES I am very grateful that my son was MY SON. He was a son that all mothers would give thanks to have.

I think some Neuros do not articulate well the message that they want to give. I do not know what the Neuro with NO EXPERIENCE was thinking as he/she spoke, but here are my thoughts.

1. Since PSP is terminal we have no meds to slow it down or stop it.....and forgot to add WE WILL TRY TO MAKE YOUR HUSBAND AS COMFORTABLE ALONG HIS JOURNEY BY ATTEMPTING TO EASE THE DISCOMFORT.

2. Your husband's death will probably be brought about by pneumonia (aspiration) or an infection........COMPLICATIONS OF PSP not PSP.

I do believe that there are Kaiser Neuros in your area that will/can help with the symptoms....as the disease continues to progress.

BTW, I requested that on my son's death certificate PSP be listed as the cause.....my request was granted.

I am still Kaiser Permanente health insured. I think Kaiser has much to offer. You have access to all the Kaiser doctors up (PULMONOLOGISTS, SPEECH THERAPIST, PHYSICAL THERAPISTS, ETC) and down the state of CAlif or out of the state (if that is close to where you live). My son availed himself of all the specialists he needed. They gave a great deal of help and direction.

Kaiser REQUIRES assertiveness. I would suggest that you go back to the MD (UCSF trained), and tell him you want him to give you the names of a minimum of 3 neurologists that he would recommend to treat your husband.

Kaiser can refer you to clinical trials, and URGENT CARE is there for sudden frightening symptoms that appear. I emphasize, that because little is known of PSP (but much more than Jan of 2017 when my son was DX) you will have to do research. DO IT NOW WHILE while the DEMANDS of the disease, as it progresses, are still NOT present. Palliative care was very helpful to us.

My son after being put on disability by LAUSD could only get insured through the ACA (Pres Obama's AFFORDABLE CARE ACT). With ACA, each year, you can change on the registry to a different provider. I could have gone with UCLA (my alma mater and my son's alma mater), but we decided that Kaiser better served our needs for the PD and after the new diagnosis for the PSP. What my son missed out on was applying to the clinical trials for PSP. YOU KNOW WHAT YOUR HUSBAND HAS. You can avail yourself of what is presently available for him.

Whatever you decide it will be the correct decision for you and your husband.

Prayers and blessings......

[rriddle]

Northern or Southern CA? I run a local PSP support group in Northern CA so know all the MDs here. And I help families in SoCal donate a loved one's brain so I'm somewhat familiar with the MDs there.

Robin

[e-mail]

[Sfen in reply to rriddle]

Hi Robin. I would love a name of a Doc with more experience with PSP. We are Kaiser and in Alameda.

Also want to attend one of your meetings. Very hard to get away. Husband very depressed, housebound, unable to control bowels.

[rriddle in reply to Sfen]

Sheri,

Our next PSP caregiver-only support group meeting is on Sunday, June 9th, 5-7pm. You can email me at [e-mail] to get on the meeting reminder email list (for this and future meetings). We meet 9 times a year.

Are you trying to get in to see Dr. Han Lee at Kaiser San Leandro? He's the movement disorder specialist at that location. (I've heard him speak at a Parkinson's support group meeting; he seems good.)

Is your husband seeing a general neurologist at Kaiser San Leandro? I like Dr. Will North.

Other movement disorder specialists within the Kaiser system are Diviya Kaul (Kaiser WC), Elena Call (Kaiser San Jose) and Rima Ash (Kaiser SF). These three are all excellent but, if it were my family member, I'd see Dr. Call or Dr. Ash. (Many in our local support group see them.) Someone here mentioned Suketu Khandhar but he's in Kaiser Sacto, not WC.

Perhaps if you aren't getting an appt with Dr. Lee, you can request a referral to one of the other three? Since they are NOT in San Leandro, perhaps there would be less hard feelings? Not sure. Usually the Kaiser general neurologists are OK about making referrals to specialists. Perhaps you can escalate within the Kaiser patient advocacy program?

Robin R.

[Sfen in reply to rriddle]

Are Dr Call or Ash Kaiser?

[rriddle in reply to Sfen]

Yes, all the MDs I mentioned are with Kaiser. Their Kaiser locations are in parentheses after their names.

[JMDean]

Sukhetu Khandar his at Kaiser in Walnut Creek. He’s a highly regarded specialist. If that’s not possible, just be sure to must insist on a movement disorders specialist instead of a general neurologist. They simply have a lot more experience in this area and in particular, with less common presentations such as PSP. The top expert in your state for atypical Parkinson’s is probably Irene Litvan. She is down at UCSD. It’s unlikely Kaiser is going to make the referral to her in a timely fashion so you might consider a private pay, one time consultation. Just be sure to request a copy of your report so you can take it back to your regular doctor.

[Inparadise in reply to JMDean]

Dr Litvan is wonderful. My husband was referred to her for a confirmation DX. She is only in clinic one day per week (tuesdays), so getting an appointment is difficult.

Kerry

[JMDean]

If you haven’t done so already, be sure to connect with the cure PSP. That’s a nonprofit focused on progressive supranuclear palsy and other atypical Parkinson’s . Not only do they have good materials for people living with the disease, they have a number of items for healthcare providers. It may be helpful to provide some of that information when working with your own therapist if they are not completely up to speed on the diagnosis.

[enzo501]

We live in Co. and have had Kaiser for almost 30 yrs.My wife recently passed due to PSP after 7 yrs with illness. I would say first of all that there is NOT a lot of treatment for the disease...more like mainly the execution of the plans and treatment you option to take . The question you should ask yourself 1st is ...are you (the patient) interested in the quality or the quantity of the rest of your days .Lets face facts ...there is NO cure so its just a matter of time ....Dr A. Kurtz (kaiser movement neurologist ) was awesome . He personnally administered botox, for eye control,talked to us (in plain english) of the options at each junction of the phases of this horrible condition , and made it easy and accessible to reach those options . He in some senses was a friend as well as a physician in our situation. If you live in NO/Cal UCSF is one of the best facilities in the world for progressive neurological diseases . We did a clinical there for over a yr. You are never wrong to question your physician ...do so with dignity ...I know your situation and I sympathize with it ....always the best ...jeff

[Sfen]

Thanks everyone. The news seems only to get worse. I need to get busy lining things to help as problems come up. (He just isn’t that bad now). Will attend a meeting with Robin Riddle, and continue to try to get a response from Kaiser San Leandro “PSP expert”. So far no luck, but also no interest on my husbands part to know anymore about his PSP. You are all so generous with your advise. Sheri

[racinlady]

Sheri,

I'm a little late in seeing your posts. My husband recently passed away from PSP which was just confirmed thru brain autopsy. You've mentioned that your husband has no interest in knowing any more about his disease. That is so typical of many people who are diagnosed with PSP. When they mention apathy as a symptom of the disease, you get a first-hand look at what that means. Like most of us who cared for someone who is diagnosed, you will have to be his advocate. We, too, were told, "you won't die from it" and, "we'll treat the symptoms when they occur". We did get a second opinion, but it didn't lead to more help with his illness. My husband opted not to return because these trips were so difficult for him and the doctors really offered no hope or any real help.

This is the perfect time for you to gather as much information as you can about what your options are for future needs. I remember this time well. It helped me to recognize symptoms as they arose so they weren't totally unexpected. Hopefully, you're a long ways away from your husband being totally dependent on you for all of his needs, but when that occurs, you can get help from hospice. If your husband gets medicare, they cover hospice services for people with several progressive neurological diseases including PSP. My husband was in a hospice program for nearly 3 years before he passed. They were a godsend. They provided support in many ways. We had help with bathing, equipment and treated symptoms as they arose. They were never more than a phone call away. I don't know what I would have done without them. When that time nears, you can start to look for the hospice that best suits your needs. You want one that will work with you as a team. Not all will do that so It's worthwhile to interview them and ask others for recommendations.

Good luck to you as you make this journey with your husband. It won't be easy, but you are wise to prepare yourself while you can. Remember to enjoy the good times as they occur. Try to do the things you enjoy when you can while your husband is still able. Enjoy the moments. And, TAKE CARE OF YOURSELF! Try to keep in contact with your friends and if there's something you enjoy doing, hang onto it. It will help you through the hard times.

Take care,

Pat