New to this site, have only written one post explaining that my wife has just been told that she has PSP. The one symptom she suffers is that she has lost the ability to speak, which has been for the last year. She sometimes feels like she is choking when trying to cough and she feels she cannot clear her throat. But saying this she is quite alright in her self . I am beginning to think if the neurologist is right in his diagnosis as she is not suffering no where near like all the other posts on this site. I have read somewhere that the voice is usually the last thing to go. She has had tests on her throat as far as swallowing is concerned and everything is working normal. Confused!
I feel so sorry for all on this site that are suffering so much from this terrible condition.
Yes, the voice usually seems to go later on but everyone is different. How are her eyes? Can she follow your finger with her eyes, up, down, side to side. The symptoms all of my friends noticed first were staring eyes and slurred speech. I noticed others but they were very obvious. If your wife has no other symptoms I'd speak to the neurologist again but if she has been diagnosed early on in the condition, the symptoms you have read about may show themselves later.
When the Dr. asked her to follow his finger without moving her head her eyes did not move, but when he held her head and told her to look at his face he turned her head from side to side her eyes stayed fixed on his face. I am sorry that I did not mention this before. My mind has been in turmoil since we where told what the future will hold. Thank you NannaB for you prompt reply, it is comforting to talk to someone who is very familiar with this problem.
It sounds as if the diagnosis is probably correct then. The Supranuclear bit describes the eyes. Our neurologist said if it wasn't for the lack of eye movement, the condition could have been diagnosed as Parkinson's as apparently PD patients can still move their eyes. It can be scary reading this site if symptoms haven't occurred yet but when C was first diagnosed in 2010, by reading posts here, I was able to prepare for the future, adapting the house etc, but C was still well enough for us to get out and about and enjoy ourselves. We went on a cruise, took a hot air balloon ride and went to places we had always said we would go to when we retire. Although things are pretty bad now, we still get out so it's not the end yet and I make the most of every opportunity to do anything physically possible with a wheelchair bound husband who is totally dependant on me and carers for every need.
Don't dwell too much on what the future will be like, if you do, it will spoil today and won't make any difference to the outcome.
I am so sorry to hear about your wife having PSP. Everyone is so different. My husband (68) has PSP and runs out of air when he is speaking and his voice softens. Does that make sense? It is hard to understand what he is saying about 10% of the time, but the other percent is pretty clear. He is definitely clearer when he is laying down in bed. Something about that position allows him to think and speak clearer. Strange! One thing that is very different is that he doesn't communicate like he use too. I try my best to continue having conversations with him, but he at times has such a far away look that I know he would rather be resting/napping.
For us the first symptom that didn't seem normal was the shuffling of the feet. He would just drag them and then eventually started to have some backward falls. After 6 neurologists, finally neurologist #7 (movement disorder neuro) got it right and diagnosed it as PSP (November 20165). All the symptoms are there--mask face, falls back, balance off, no taste/smell (that was the second symptom that appeared), changes in eye vision and movement, swallow incidents (only a few), speech but he also has this awful leg/hamstring pain that just consumes him and us. He is miserable! He still does everything on his own (showers, dresses, feeds himself, eats normal food, etc) but it is all in slow motion and with lots of caution. All these symptoms except for the shuffling all happened in one year and a half. Ugh! So darn fast!
This site has helped me so much and kept me from losing my mind. As carers we have to deal with so much and make so many changes to our lives. I never want my guy to think that I have given up on him and surrendered to PSP. So I continue to HOPE for some relief and try to keep us both thinking as positive as possible. Our minds are so powerful we can't let this disease win!
Hang in there my new PSP friend. You are not alone...we are all in this together.
I was diagnosed with psp in 2013 but have had Parkinson's symptoms since 2008.
I too cough not all time just occasionally and occasionally choke on food but have learn t how to over come this by breathing whilst eating. you see things that were normal and automatic before I have to really concentrate on now, like swallowing food and walking, still apart from these few thing i am generally well and am quite independent,. I think that I must have a milder form of psp, hope that this will give you a bit of hope remember everyone is different.
Hi, Steph02. Good to hear from you. I will suggest that my guy think about his breathing while he eats, see if that might help. He says just being mindful of his swallowing makes a big difference, but the choking is getting bad again. Thanks for the advice!
hi i had not tjouhght of breathing whilst eating - i tend 2 eat v . quickly as if every meal were my last and that it'd be taken away from me not true i know]but i find it impossible to slow down and take my time
Hi Brian, yes PSP is very confusing! You have to remember, the body and the brain are in full working order. It's the neurons that are being strangled by the protein, Tau, that is stopping the messages getting through, therefore makes the body look as if there are problems. At the beginning, some days the message gets through, some days not! There does not seem any pattern which makes this happen. Frustrating for all concerned!
Have you come across Apps for the iPad that helps with communication? There are some very good ones around. Get your Speech Therapist to help you choose, as different ones are situable for different problems.
Yes there are very good iPad apps. My husband has one he types what he wants to say and the system speaks for him. Sometimes he sits and writes his thoughts and then I can listen to it, although I often have to listen to him giving me a good telling off ha ha.
Thanks for your reply. When the doctor told us it was PSP one of the questions I asked was, do we still go to speech therapy and he said it would be no good as she could not form her mouth or use her tongue properly to form the words or letters .
Where are you? I am finding the Speech Therapist is becoming the most important person. S can not talk at all, but Speech seems to be the least of her roles. Swallowing is her main concern. She is the one that will sort any peg or help with changing diet.
My husband is 82, diagnosed Nov '13, his 80th birthday.
He had had voice problems a year previously, fixed gaze, staring eyes. He shuffled a bit, fell a bit, some confusion for some time. I thought a mini-stroke. The diagnosis was shattering and it just takes time to really accept, although , as soon as I looked on-line and read the symptoms I knew.
Now he chokes a bit but eats well. I cut his food up because he can't see down now. Like Jill he wolfs his food, if I don't check him. He didn't used to do this.
He suffers with mucus in his mouth, which he finds it difficult to clear. He seems unable to spit.
He walks with a walker or a stick and me.
Talks slowly, thinks slowly.
One thing I have learned on this site is that every one is different. Our neurologist seems unsurprised by the order of deterioration.
Everyone is different. My wife's first symptoms were occasional forward falls. Then she started talking softer, almost a whisper. Then the dreaded backward falls. Then the incontinence. Then the voice got worse and speech became slurred. Vision started getting bad and couldn't keep both eyes open at the timel preferred dimmer lights and had trouble looking up and down. Swallowing became an issue and having much difficulty eating. In her 5th year of the disease, we had a PEG tube inserted. Starting in the 6h year, dementia sets in. She is now in her 7th year. For the past 6 months or so, she rarely speaks. As for mobility, the first 4 years, she was able to ambulate on her own using the U-step weighted walker. But into her 5th year, she would fall way too much, so now we lock arms to move around the house. We use a wheelchair when outside the home. The past 6 months, she has been much more difficult to ambulate, so sometimes I use a wheelchair in the home. Early in her 7th year, we finally succumbed to signing up with hospice. Still hanging in there. Totally NPO (nothing by mouth). We still get out frequently and are currently down at our cabin at the lake. Life can be hard, but there are still many things to enjoy. Just holding hands is one of them.
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