Our battle with PSP

Hello,

My name is Becky and my sister was diagnosed with PSP in 2014, but she had early symptoms for about a year earlier. She started with vision problems, seeing double and not being able to look up. Her personality changed and became extremely combative and argumentative. Also, she had the blank stare, low, slurred speech and a shuffling gait. She has progressed to falling frequently; 2 broken noses and a concussion, multiple bumps and bruises, shoveling food and choking. She walks with a walker, but will impulsively leave it behind and then falls. We don't have a local neurologist that is familiar with PSP. We have seen one Dr. at UAB in Birmingham and one at Vanderbilt in Nashville. The Dr. at Vanderbilt confirmed she had PSP.  But, informed us there wasn't anything he could do. There wasn't enough research being done and the drugs are Parkinson drugs and don't help much if at all. Needless to say, we left feeling angry and totally alone in this battle. So, we went home and I started my research into what PSP was and what we were dealing with. It's depressing and scary as hell, but we are managing and taking each day as it comes and trying not to think of what's to come, yet being prepared.

20 Replies

oldestnewest
  • Hi, Becky. Sorry to be welcoming you here, but you are welcome.  The lack of treatment is hard to accept.  I think we all have tried some various courses of drugs and supplements. Some folks have good results with one thing or another for a time, but the progression is so individual, and so full of ups and downs and plateaus, it's impossible to be sure what is helping, if anything. I'm very sorry your sister is progressing as she is.  The personality changes must be terrible to cope with, a painful way to lose a loved one.

    I'm in Maine, by the way. I'm sure you'll hear from others as dawn breaks in the UK.

    Hang in there. We are all in this together. Easterncedar 

  • Welcome to the site Becky.  I'm so sorry your sister has this horrible disease.  We are in the UK and my husband was diagnosed in 2013.  Your sister's symptoms sound very typical.  You will need to get help but we are in UK and the system is rather different here but I'm sure you will get advice from those on your side of the Atlantic.  You are right that Parkinson's drugs do not generally work well in PSP patients although some have found benefit at least for a while.  I'm afraid it is a case of coping with each symptom as it arises and trying to stay positive.  The disease is relentlessly progressive although everyone experiences a different rate of progression.  There are some on this site who still post after having the disease for many years and give us all an invaluable insight into what it is like to be a sufferer rather than a carer.  Try to do some lovely things with your sister now and make happy memories while you can.  You are not alone in the battle as all of us here are with you.

    Vicki x

  • Hello Becky, I'm sorry your sister has this awful condition.  Being prepared is important, thinking of adaptations that may be required in the future, now, for when the day comes when your sister can't get up stairs, can't get in the bath/shower/ car etc. Are you her main carer? Whoever is will need lots of help and time off during the week.  I don't know what help is available in the USA but others will.  It is depressing and scary but we are still doing memorable, enjoyable things 6 years after diagnosis.  There is no cure but we have found laughter is the best medicine.  Folk with no knowledge of PSP would probably be horrified at the things we laugh about but it does us far more good than crying.

    Best wishes.

    X

  • Hi Becky your Vandebilt guy sounds like our UK neurologist who confirmed M had PSP then said "sorry there is no cure, no meds and she will be dead in about 5 yrs see you in a year".  So cold matter of fact and as much use as a chocolate teapot, got most help from PSPA (US version is CurePSP) and this site.  

    Yes M still here and we are coming up to 5 yr since seeing him.  All I can say is prepare yourself and your sister for a long often hard road, if she can get about still without too much difficulty do somethings that get good memories now so you can share them in the dark days ahead (I only wish we had done more).

    Best wishes to you both and keep reading this site.  Tim

    (Advantage of this site is you can blow off steam and frustrations with PSP with people who understand and often been there).

  • Hi Becky welcome to the site, best place ever, with all these lovely people, so sorry to hear about your sister, life is horrible sometimes, George was diagnosed is 2014 it has been a heartfelt journey, something different all the time.  Enjoy the time with you sister while she can still do things, and keep the memories close to your heart.  Yvonne xxxxxx

  • Thank you all for your kind words of encouragement. I have to thank mthteach for contacting me and giving me the courage to post our story. We live in the same state, so it's nice to know someone in the same boat that is close by. I am my sister's primary caregiver. Also, I care for my 99 year old father. He is in better shape than my sister at this time. However, neither one can be left alone. Right now, I have a cleaning service that comes every other week, so that takes care of a lot of my time.  My sister is working out with a local wellness center twice a week to keep her as mobile as possible. During this time, I have a caregiver agency come in to stay with my Dad. They also help with cleaning and laundry. I pretty much stay glued to my sister helping her get around, helping her in the bathroom and giving her a bath every night. With heightened impulsivity, she is constantly getting up to go somewhere, so keeping up with her is sometimes exhausting. We haven't gone out much this winter, due to the crazy weather we've had. Hopefully, we can get out more during the Spring. Fortunately, I have 2 cousins who have been a great help when needed. I'm trying to build up a support team to help keep me going. It has been very helpful to read your posts to see what everyone is dealing with in this fight we have with this awful disease. I thank you for your continued transparency of all you face. 

  • Hi Gracie Girl,

    Yes, so sorry you've had to join this site, but it's such a great resource. My dad and I are in Massachusetts. Did the doctors prescribe any medications?

    My dad is 92 and in fairly late stage PSP or some form of Parkinsonism. He's in a wheelchair and doesn't communicate much. He has 24 hour in home care.

    I wish his doctors had prescribed Amantadine earlier in the disease when he was still walking with difficulty.

     I recently saw Amantadine discussed on this forum with mixed results for different people and had to ask my dad's doctor if we could try it. On starting Amantadine, my dad immediately stopped drooling which is a huge benefit in itself.  He also started talking much more (we can't always understand all he says) and he is much more awake during the day. 

    My dad has also tried Sinemet a number of times over the years, and while it didn't seemed to help earlier on, at this late stage it has helped

    somewhat with speaking and cognition. He's also on a mild anti-depressant.  

    I tried everything to keep my dad out of a wheelchair for as long as possible. He attended exercise classes for people with Parkinson's and went to physical therapy.

    We joined a local support group. We had in home physical therapy with visiting nurses later. 

    Even though it's for people with Parkinson's, you might look into LSVT Big physical therapy in your area.

    We didn't have any local physical therapists trained in LSVT Big in our area while my dad was still able and I was so frustrated he couldn't try it.  

    My dad had always been very physically active all his life. I think that kept worse symptoms at bay for a long time.

    It's a progressive disease so with effort if you can slow the progress in any way at all you are doing great. I see that now, even though I felt I was failing my dad at the time. 

    Take care,

    Carla

  • Initially, the Dr. prescribed Sinemet, but it had no effect on her. And we haven't tried anything else at this time. If there is anything I have learned is that we all do the best that we can at that time. You can't live with the what if's and I shoulda's. It doesn't help and it makes you feel miserable. So, don't do it! It sounds like you have done a wonderful job of caring for your father. Remember that. I cared for my mother before she died of complications of COPD(awful way to die), and I know in my heart I did all I could do to keep her as healthy as possible and as comfortable as possible. Stay in the Now and not in the past. Thank you for sharing with me your journey with your Dad. In the future, I will keep in mind the possibility that the drugs could help later on. I will look into LSVT and see if there is anyone in my area. I haven't found a local support group, but I stayed glued to this site and CurePSP for help and encouragement. I think ya'll know more than the Drs.

    Thank you,

    Becky

  • Sorry you learned such a valuable lesson through your mom's illness. My dad is also diagnosed with COPD. He has severe asthma attacks from time to time and chronic asthma which we manage with albuterol in a home nebulizer. We're about to try Budesinide. I stay glued to this site as well and have learned a lot. My mom has Alzheimer's. It's quite a combo. Staying in the now is great advice.

    Best,

    Carla

  • You've been dealt a double dose as well. I know how hard that is. Bless you for being strong and doing all you can do. Like you, we take each day as it comes. Thank you for your reply.

  • Very difficult journey sorry you had to join , everyone is so helpful on this site dont know what of done without everyone on here, your right no drs or nurses in my town had heard of psp I was telling them what it was all about bloody frustrating indeed. Thinking of you xx

  • Welcome to the site, use it as you need everyone is amazing in one way or another. My dad is at peace now but I still read posts and comment from time to time. I intend to continue to raise awarenes and funds for this dreadful illness and pray it never touches my family again in terms if diagnosis but we will always be a PSP family. Good luck and my prayers are with you and everyone on here xxx

  • Hello, Becky my brother was diagnosed with PSP a rare brain disease also, two years ago with symptoms a couple years prior, there is no treatment at all for this disease as it is so rare, very progressive, with the falls constantly, a few trips to the E R, bought him a helmet, protects his head from trauma. There is so much more to this horrible disease, all one can do is take one day at a time.

  • hi becky

    welcome to the  site.. i have psp dxd   over  5  yrs ago now and i have just  tuned 70  \and despite brg in wheelchairinand and out still go to a tai chi class onc e  a week; parkinsons  group every  other, week';  choir rehearsals every week  my hair don e at the hairdressers each week  and a friday spent going to  a  group loc\ll y   2 replace   my sessions at the local  hospice  which have been.great in all respects

    it is  so important  to get something out of  each day so at you both have memories 2  fall back upon in the darker days which will surely come

    and try and plan for the future

    like getting affairs in order,/ getting stuff for the house/ refurbishng  it where needed  etc  etc

    ol jill

  • You dear lady are a marvel! We've got her papers in order and her finances. We remodeled her bathroom before Christmas last year. She already needed to a walk in shower. The floors are hardwood, so don't have to worry about that. I know there must be more, but I'm working on it. One of my worries is S. has never been a spiritual person and once she broke down and said how scared she was. It just about broke my heart. I reassured her that I wasn't going anywhere, that I was going to be by her side for the long haul, that I would never leave her alone. I couldn't tell her how scared I was. I will have to try harder to get her to go places, she's always been a homebody. Anyway, we're taking each day as it comes. Thank you for your kind reply.

  • Hi Gracie Girl. I feel like you. The first doctor first felt my husband had LBD, the Lewy Body but when I read up on the symptoms they weren't there. The next doctor said it was CBD, Cordio Basal, not that one's any better than the other. Still, the symptoms don't seem to be there. The third doctor says it something else, entirely. My husband had a stroke in 2013 and had had two TIA's before that. In 2014 he had back surgery for a disc problem, after having injections twice that didn't work. The surgery worked but I have to wonder if that started something.????

    In 2015 he had weakness on the right side, the stroke was on the left side. He had the regular symptoms of Parkinson's but the doctors all said he doesn't have regular Parkinson's, that he has Parkinson's Plus.  So no medication except for anxiety and depression.

    You're going through much more that I am at this point but I know that I could be there at any moment. My husband is not the same as he was. It is scary.

  • Hi Becky, welcome to the site.  We live in Louisville, KY and I lead a monthly support group for the atypical Parkinson's (PSP, CBD, and MSA).   I also took my wife to see a doctor at Vanderbilt (Dr Peter Hedera).  As you said, no positive news and not much can be done.  Fortunately we do have some pretty good Movement Disorder neurologists here in Louisville.   We've also tried a couple of clinical trials and attempted to get enrolled in the C2N trial that is currently underway in Dallas, but my wife was too far progressed with PSP and they would not allow her to participate.  Hoping a cure is found soon and that it won't be too late for my beloved, but I'm pretty sure we have very little time left.

    God bless you for being such a good, caring sister.   She's going to need a lot of help.

    Ketchupman

  • Welcome to the site.  The advice people offer is invaluable.  My dad was diagnosed last year and this terrible disease is scary and I personally can't look too far into the future, as it scares the hell out of me.  Good luck with your journey.

    S x

  • Dear Gracie_Girl,

    I am so sorry you and your sister are going through this. As a little background, I was diagnosed with PSP in 2015 at age 69. I had spent my life as a registered nurse (which I loved) and only retired 1 1/2 years before my diagnosis due to my extreme fatigue, visual difficulties, frequent falling and swallowing, coughing and choking issues.

    Upon diagnosis my family researched the disease and decided I should go to the University of San Francisco Memory and Aging Center and get a second opinion from Dr. ADam Boxer. This I did, and he confirmed that I had PSP. I was fortunate because they were going to start a medication trial for treatment of PSP. I have been in this trial for approximately 7 months and have now rolled into the open label segment ( 3 months ago) so I am guaranteed to receive the real medication. I honestly believe I have gotten the real since I began the study as I have not really progressed negatively, per me and most relatives and friends. The last about 6 weeks have been quite difficult with my vision so I have not been able to follow this sites posts. This is the reason it has taken me so long to respond to you.

    I would suggest you go to the CurePSP site and check under the RESEARCH tab. There are many centers enrolling patients for this BMS (Bristol Myers Squibb) study. I am about 120 miles from SF and traveling is tiring but well worth it. They do lots of studies at no cost to you (MRIs, Lumbar punctures, labs, visual tests, and neurological testing). I met a lady 3 days ago in SF who travels by air as she lives quite a distance from CA. BMS reimburses some of your expenses, so it really helps. Hopefully, you can find an enrolling research center not too far from you.

    I must say I have never felt alone in this process as my local primary Dr., my local neurologist and all the staff at UCSF give me so much support. I do hope you are able to find the same support. Please contact me if I can be of any help.

    Mary B

  • Wow, Gracie Girl,

    The walker part is what I call "the flying walker." Charles lifts it up and walks. Funny but not! I feel for you. Sad times ahead.

You may also like...