Newly diagnosed: my husband was diagnosed 2 months ago with PSP and we cannot get into see the Chapel Hill Specialists. How can we get in?

[TBoyles]

My husband is declining quickly with PSP and local neurologist does not know anything about the disease. We have been trying to get in to Chapel Hill Neurology where the 2 specialists are but are not able to get in after 2 months. What should we do. I am disabled and cannot take care of my husband. we are truly afraid as to where to turn. Please, we welcome any info as to where to turn.

[Motts]

As l read your words...well, my mind wandered back to when mom was diagnosed with PSP. We had never heard of it... which made us ask questions.

This site is a good place to learn about PSP. The folks here are understanding & supportive.

It took me awhile to learn my way around this site because computers are not my thing. Thankfully there was always someone ready to help me navigate through the maze of information. Sending hugs to you & your husband... Granni B

[TBoyles in reply to Motts]

Thank you so much for responding, I am learning more rom this site and it is such a blessing! Thank you again.

[Motts in reply to TBoyles]

Glad to hear this site is a blessing to you too!

[daddyt]

It sounds like you're in the UK. Contact the PSPA or Helen - the site moderator with your concerns. Others on this site, will be very helpful too.

Tim

[TBoyles in reply to daddyt]

Hi. No, I am from NC and have had my husband to the top Neurologist in Charlotte, NC and her response to every question is 'We just don't know'. So we have been trying to find info.. We were told that he should have PT and Sight therapy. Does that work?

[daddyt in reply to TBoyles]

Okay. Let me direct you to CurePSP.org. They will help you navigate the system and provide you with invaluable information and resources best suited to your circumstances.

Tim

[TBoyles in reply to daddyt]

Thank you!

[Stephanielayell82]

We were able to get into wake forest thur referral from neurologist. However this disease is very little know. We've given up years ago on doctors they don't have the answers. So they would just make up a response. I believe a lot more people have to but are misdiagnosed with Parkinson's disease. Good luck

[TBoyles in reply to Stephanielayell82]

Thanks for the info.. My husband was told that he should have PT and Sight Therapy. Do you know anything about that?

[Stephanielayell82 in reply to TBoyles]

We've went through 5 rounds of PT and speech therapy no results to help. But haven't heard of sight therpy.

[TBoyles in reply to Stephanielayell82]

Thank you... It is not well known and the one Vision Therapy company close to us does not take insurance and it is $5000 for 6 months of visits. We could not do that so we went with an occupational therapist that works with sight and hearing disabilities, My husband cannot see straight lines and everything is distorted diagonally.

[Stephanielayell82 in reply to TBoyles]

Yikes I know PSP does effect the vision so that would be a lot to pay and yield no positive results. We are in Mills River NC. When was your husband first diagnosed just curious? When my loved one vision was impacted we went to eye doctor weekly. She would always just say they don't want to help but I just don't think there is much help. But most try to do the best. Just a huge lack of knowledge. I even shared stories of people's experiences and they are just in shock.... this disease is one of the worst I've ever seen.

[TBoyles in reply to Stephanielayell82]

Oh my.. my husband started showing symptoms 3 ans a hlf years ago, He could not remember how to fix the computers and machines at USPS where he had worked for 35 years as an Electronic engineer. He could only tell me that he had to retire because something was wrong with him. He also developed Claustrophobia and trouble seeing. The first year from the Neurologist he was diagnosed as having sleep apnea. and he did have cataracts removed thinking that was his vision problem. After a year he could not walk without feeling unbalanced, so we went back to the Neurologist and he diagnosed him this time with Parkinson's. After having the brain scan with dye about a year later we were then told that he did not have any trace of Parkinson's. So we change to another Neurologist in Charlotte who came highly recommend by several Doctors at the Neurological Center with Novant. She started over with the sleep apnea theory, then several months later finally said he needed a Neurological extensive evaluation.. So we just got results from that 2 months ago.. Yes, PSP. So it has been 3 and 1/2 years and maybe longer he thinks he was having symptoms.

[Stephanielayell82 in reply to TBoyles]

Oh ok we are in year 7 she was misdiagnosed until 2019. Such a roller coaster disease.....sending you positive vibes on this journey.

[ncgardener799]

I live in Wilmington NC and my husband has PSP since 2015. We have been to Chapel Hill to see Dr Sklerov. If you cannot get to see her, ask to see her physicians assistant. You can also try Duke Neurology Dept ask to see a movement disorder specialist. If you say you are willing to see a Physicians assistant you might get appointment sooner. If you can get to Wilmington there are 2 movement disorder specialist at New Hanover Physicians Neurology. 910 662-7500. If you are willing to see a Physicians assistant or nurse practitioner for initial visit you will get an appointment sooner and they will then get you to see the Dr faster. Also, you can Contact Cure PSP.org and ask for help. Is you husband a US Veteran? If so check with local VA office for advise and help. I hope this helps you. Please keep me posted.

[TBoyles in reply to ncgardener799]

Hi, thanks for the advice. I will call and try to get into the PA or NP. He has seen Dr Englert in Charlotte, NC. who is the top Neurologist in Charlotte and she knows nothing. Is it worth it to see the Drs. in Chapel Hill? He was told to do PT and Vision therapy. Does that work?

[Auntbuzzy]

Good morningWe have just returned to Charlotte, NC so I am interested in this question. Up until now my husband with PSP saw Dr Patel at the movement disorder clinic at the University of Florida in Gainesville, but because of his declining mobility we have had to sell our FL condo to live permanently in N C. I did not realize we will have a hard time getting an appointment at Chapel Hill so I guess I’d better start trying.

I would appreciate hearing from anyone else in the Charlotte, NC area and their experience with neurologists here.

[TBoyles in reply to Auntbuzzy]

Hi. I live in Mooresville NC. We have been under the care of Dr Englert, the top movement disorder neurologist in Charlotte. She answered every one of our questions with 'We just don't know'. Sorry but my husband was misdiagnosed for 3 years with Parkinson's. We were told that my husband needed PT and Vision therapy. Do you know if that works any?

[choclab511]

This will sound harsh and cynical, but it's also reality. My mom, diagnosed with CBD in 2017. I took her to two Neuro appts. After the second, I said no more. The neuros will not help. This disease has no cure. They will provide you with nothing of any substance.

Instead, my advice would be to focus all your energy on finding quality caregivers who can assist in every step of this long, horrid journey. Quality caregivers will trump run-of-the-mill neuros every time. And also... talk to your husband about his desires. Choices will need to be made, and the ability to arm the caregivers with this information will make it easier on you.

[TBoyles]

I do appreciate your honesty. I have found some of the same. Do you know if PT or Vision therapy works?

[Martina_MP]

You can ask your primary care doc for a referral to physical therapy, occupational therapy, and speech therapy if needed. If your husband has mobility problems ie is using a wheelchair, he may qualify for some 6-8 weeks of these therapies at home. Meanwhile, if he is able to be active safely, exercise may help maintain function.

[TBoyles in reply to Martina_MP]

Thanks so much, so he is receiving the vision therapy now, and he can still walk very slowly but not climb stairs well. He was advised to walk everyday and I may soon have to get a walker but can't afford the U one now. His Physical therapist is wanting to take a break until he i more debilitated because she said she could not help anymore at this level. The left side foot curves towards the opposite side of hos body like a T in front of his other foot. So we have to watch him closely. Thanks again, I am still in shock, grieving and virtually numb. I have to come out of this and act...

[Martina_MP in reply to TBoyles]

Here’s an NC group, Dementia Alliance of NC, that offers ‘Dementia Navigation’ around local resources, maybe they can help you think about future needs and arrangements, identify local resources and support groups. PSP falls under the frontotemporal degeneration (FTD) umbrella. dementianc.org/helpsupport/ Also you can keep an eye out on Nextdoor or Craigslist for less expensive used walkers, transport wheelchairs, and other aids when you start seeing a potential need. A less expensive, lighter walker might be fine for a long time.

[TBoyles in reply to Martina_MP]

Thanks so much!!

[LuisRodicioRodicio]

Hi TBoyles!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[TBoyles in reply to LuisRodicioRodicio]

Thank you so much for your kindness. Yes, I would love the notes and experiences that everyone has had. Everyday, I do not know what to expect and I think the changes have me so afraid..