PSP eye problems

[ajsimon8781]

I guess I should have mentioned we are in the US in state of Oklahoma and getting appointment for neurologist is next to impossible as the few we have say they are not accepting any new patients. Only one we found is in Dallas, TX for next June. I’ve now placed her on hospice care and will try to give best care I can as I live alone and had to quit my job as a registered nurse to stay home. She is very stubborn tries to do things herself but cannot. She does have trouble swallowing food and liquids but does not want peg tube, had pneumonia a few months ago.

[carehope]

Hi ajsimon , So sorry to hear about your Mom's (and your) troubles ! We're in NY and though we share the universal frustrations of dealing with uninformed health care workers, it's not as challenging as what you've encountered in Oklahoma ! I'm an RN also and similarly had to stop working as I couldn't juggle my paying job while also taking care of my sister. Re: the difficulty with opening eyes that can accompany PSP - the nerves/muscles that control eye functions are affected along with overall gross and fine motor function so over time many will keep their eyes closed as it takes too much effort to open them. As the eyes also have difficulty with focusing , peripheral vision, etc, sensitivity to light also occurs so it's easier to close eyes to keep out irritating light. Sunglasses are helpful as a comfort measure, but unfortunately cannot help with vision.

From reports on this site I've gathered that Botox injections have on the whole not been very successful . If you look up 'Lundie Loops' you'll find that a John Lundie in Wales devised a physical add on to eyeglasses that people found to be helpful in holding lids open . It's been some time ago though and I also don't know if there is any ophthalmologist/optometrist in the States who's implemented anything like it. Worth looking into though !

I found the posts again by Googling

it.

I hope that you have at least one caring qualified MD near you who will help you out by ordering meds and other interventions that you request based on what others on the site have tried or found to be helpful with some of the problems that PSP may cause.

Lots of luck and we're here for sounding boards , support, and to help in any way if we can !

Best wishes and lots of love,

Elise

[ajsimon8781 in reply to carehope]

Thank you Elise! I will look into it but so far none of the meds her dr has tried worked any at all. He is wonderful and was always open to any suggestions. Unfortunately since I’ve admitted her to hospice we can’t use him anymore. The hospice dr is doing well for us so far and having to give the dreaded anti anxiety meds since she keeps getting up and down every 5 minutes all day long. It’s just been a hard 15 months caring for both parents alone, trying to work full-time, quitting job, dad passing April 1st. I know I won’t regret it later on though. It’s the least I can do.

[carehope in reply to ajsimon8781]

Hi again ajsimon, Many condolences on your Dad's passing ❤️‍🩹💜 ! So tough at any time of life , but when providing care for both parents at the same time ; unbelievably stressful !! Thankfully , you're a caring dtr who also happens to be an RN ! Sometimes I've wondered how I've done it , but as you've said, there's no other choice. There was no acceptable alternative and no doubt that of course I'd care for parents along with my sister as she goes through this devastating illness. Sometimes I've thought that it must have been fated that I chose Nursing as a profession !

So glad that you've had the help of a great local MD even though you said that the Hospice MD has now taken over responsibility for your Mom's needs. Though A. has been a Hospice pt for the past several years , I've been taking care of and managing her care for approx. 12 years. I obtained a referral for hospice from A's neurologist when it became obvious that A. needed an indwelling catheter secondary to neurogenic bladder issues. She had also become wheelchair dependent, etc... I knew that A. wasn't going to appreciate her sister performing catheter insertions and am eternally grateful that A's hospice nurses are competent and always available ! A. also went through the "impulsivity"period when she was still able to ambulate, and it was so dangerous and amazing that her falls were not worse ! She was unfazed , though I was in nonstop emergency mode ! Repeating to her to call me or ring her bell first had very little effect. Just another facet of PSP ; impaired judgement!

I still use A's neurologist as my main source for interventional med orders as the Hospice MD doesn't have the necessary knowledge base and isn't proactive. The Hospice nurses and I work well together as I'm with A. every day compared with their once a wk and prn visits.

Was trying to think of anything to suggest ! I tried using "Talking Books" for A. when eye difficulties caused her to be unable to read any longer. That has to be one of the most difficult losses for people and I think one of the most cruel and distressing ! Good radio and TV have also been helpful . I use Nestles "Thicken Up" in thin liquids like water and thin juices to prevent choking and so far, A. is still doing well with a soft diet.

Take care ! Warm regards,

Elise

[HowDoglover in reply to carehope]

Hi I got some glasses fitted with lundi loops for my husband, he couldn’t tolerate them & made him very agitated, so we had to abandon them, they cost over £300, so a waste of money, & not recommended!

[carehope in reply to HowDoglover]

Hi HowDoglover,Thanks for weighing in on your husband's experience with Lundie Loops ! The course of trying to do our best for those we care for is such a roller coaster ride ! It seems that just as with medications , durable medical equipment , PT, OT, etc.... each individual's experience is highly variable . So frustrating that an intervention that is helpful for one person may be just the opposite for someone else !! And added to our disappointment is the fact that very rarely if ever is the financial cost refunded when an aid that we've purchased doesn't work out. I'd read at least one account of success with Lundie Loops, but the fit of eyeglasses and additions made to them would seem to obviously call for a very individualized in person approach ! If only there COULD be an effective way to help PSP affected people with the eye issues !!