diagnosed with PSP. It truely is the most horrific condition I've read about. She's 72 years old and only a few months ago was teaching sewing at my daughter's school and doing Christmas shopping. Now-5 and half months later-she's hardly able to walk. Cannot look up or down only sideways. Has the "stare". She has no appetite at all but is still managing to swallow with no problems. I just worry that it seems to be progressing quicker than the articles/info that I've read. Is such deterioration possible in less than 6 months? I'm absolutely beside myself. She's already saying that she's ready to "go". She fell a month ago and broke her clavicle. A week after the op she fell again on same side. Another fracture on same bone but different place. Ortho won't operate now. What happens when she can't talk to say she's in pain? She is anxious and OCD all the time. And cannot sleep at all. Not even a cat nap. Does anything work- she's taking zolpidem with no effect. Sorry lots of questions. Am new to the group but just needed someone else to talk to.
Thanks
Debs
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DeborahRamsden3602
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So sorry to hear about your Mom Deb, my Mom is 78 and also has this dreadful disease. I think everyone progresses differently, although it does sound very fast in my experience. I want to say all you can do is take one day one symptom at a time and give your Mom love. Perhaps you create a signal if she is in pain when she can no longer communicate verbally. Sending you lots and lots of love, I don't wish this on anyone.
Thank you Cheryl. I think the signal idea is a great one. I'm so sorry about your mom. Like you say one day at a time...a deep breath and plod on. Thanks for being there.
Glad you reached out. This is a wonderful, supporting group that has so much wisdom and strength in its members.
I totally get it.."the mother of all monsters". PSP and CBD are horrible! So difficult to see our loved ones deteriorate before our eyes.
My husband with CBD had no medications even suggested that would help him until anti anxiety meds (zyprexa & celexa) to help with agitation. Sorry.
As far as speed of progression..my experience was that Michael was functioning fairly well until he fell, after which point he rapidly declined. He had a concussion which exacerbated all symptoms.
My prayers are with you and your mom as you are challenged with this evil disease.
Thank you Liz. I will Google those drugs to see if available in South Africa. My thoughts and prayers are with you during this very difficult time. I cannot begin to imagine your pain. Lots and lots of love. From sunny SA xxx
The inability to sleep is a real problem and makes everything worse. I wish I could say we found something that worked, but the drug that worked at all knocked my guy into a semi-conscious state where he couldn't eat or respond and, although we stopped the medication, this phase contributed to his ultimate decline. The weaker drugs would give him short periods of restless sleep. It was awful.
I am sorry. This is hard, but while you have your mother you can show your love, and that is no small thing. I would not have preferred a sudden death for my sweetheart, however much it would have spared him. And I don't think he would have, either.
As said already, the speed of PSP can vary. Sadly we've experienced the same as you. Rapid decline in 6 months from being relatively active and alert to being wheelchair bound, the stare, speech loss (not completely) and swallowing problems. It's been a steep learning curve in such a short space of time. Really sorry to hear you're going through this too. If you need anything, just shout xx
I wish I could offer more than sincere sympathy to you and your mother. Your mother's progression is so fast. I think one of the worst parts for the care givers in the feeling of helplessness, and we can only deal with the symptoms. At least it is for me, so I tend to try everything non-allopathic. I gather medical CBD is not legal in South Africa, but perhaps CBD from hemp is. And sending you virtual hugs.
Christine
PS And I am trying to keep my husband awake! He sleeps well at night, and then cat naps all day. Go figure!
Welcome to the site and never apologize for questions, venting, etc - that's what we're all here for!
In addition to what others are saying I encourage you to push with the doctors to address your mum's anxiety. With the anxiety calmed, the sleeping med may take better effect. Also any work toward communication: sign language, signals, pictute cards etc will take better hold.
I can only say that things went better for us once hubby started the SSRI (and he takes a sleeping pill). We know nothing cures the disease - it's all about helping our loved one have an easier journey through to the end.
Hi Deborah, You've gotten a lot of good advice from people on this site already. The one constant with PSP is that it affects everyone differently, but they usually have most of the same symptoms in varying order. Your mom sounds a lot like my husband. He would start with one of the symptoms and he would plateau for awhile (usually no more than 6 months) before having another one. A serious fall would almost always precede another decline. He had the same problem with his eyesight as your mom from the beginning. We started him on Celexa for anxiety around the time he could no longer walk unassisted about a year and a half ago. We, just this week, started using CBD oil for the pain he's been experiencing due to his muscles contracting. So far, the results have been amazing. He's more alert and actually said he was hungry yesterday. He hasn't been able to walk or talk for some time so that was surprising. I'm wondering if he will get some more of his speech back at least for awhile.
What I found helped the most in the early stages like your mom is in, was to have an OT come out and make suggestions on how to make things safer for him. We had her return again to help us with how to transport him when he wasn't able to walk anymore even with assistance. The first things we did were add a ramp into our house with a handrail and grab bars everywhere he needed to go like the bathroom, shower, etc.. We eventually added a roll-in shower. Then we got a stand assist device for transferring him safely. He has been in a hospice program for almost 2 years now and I highly recommend that you get help from them when and as early as you can. They're very supportive. If you're in the U.S., Medicare pays for it and they can arrange for the things you need as you need them. Your mom's neurologist should be able to help you with how to obtain the services you need and what is available wherever you are.
While I feel for you having to deal with this unwelcome visitor in your life, you need solutions more than sympathy at this point. At least that's what I told anyone who would listen in the beginning. You will find plenty of both on this website. I just wish I had known about the wonderful people on here much earlier. I hope you find this helpful.
Welcome to the group. You will find lots of good advice and comfort and understanding from folks in the group. Unfortunately we all share the similar monstrous stories. My 75 yr old dad was diagnosed with psp 6 months ago. He was first diagnosed with a stroke 3 years ago. His progression so far has seemed to be drastic and then stabilizes for several months. It seems like he nose dives then plateaus for a bit. Hang in there and of course cherish every moment.
Hi hubby has CBD, he is 47, the last 9 months have been the most progressive with this disease, although he has been non verbal for nearly two years he could still manage to eat!! now he is peg fed cant move his head right arm or walk he barely manages to stand and when he is moved he is stuck in that one spot till i move him to toilet shower etc.... some seem to have quicker progression than others I guess there is no reason to it ,unfortunatley it is the nature of the beast of these dreaded diseases.
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