Althea, I love your list, if only! I was able to some on list, but like you say, when PSP comes into your life, it's like a tsunami, it just takes over and always without fail, it's two steps, at least in front of you.
My advise to any newbie, the most important thing on Althea's list, is dance in the rain together. The rest will get sorted out, but you soon will not be able to dance.
Well I've picked myself up and realized he wouldn't dance in the front room let alone the rain.....well we did hike in the rain...I think we had a flat tire in the rain....and naturally one of the kids usually had to got to the bathroom during our roadtrips in the rain.....so some sort of 'waltzing' was within our spectrum....hahaha
I never did either, can just imagine Steve's reaction, if I had suggested it! But that sentence of yours summed up all those things, we should all do with our partners, regardless of what the future is going to bring.
Thank you Althea. You are absolutely right. And you can begin some of these prior to diagnosis. It's about living life to the fullest while you can while preparing for whatever life might throw at us. I'm finally accepting that all that is certain in life is death and taxes. We all have to deal with stuff. You just don't know how you'll get hit.
Sorry you are scrambling. Take a deep breath. Prioritize. Celebrate each item you can cross off your checklist.
I have been reading up on you closing your husbands practice. That must have been so stressful.
I've been spared from that as we both retired some time ago. Yes ! You are right we can celebrate in the small things even when the checklist gets short. Like just being together.
Awww Althea 💜 Many thanks for that great list !! You know ? I'm guessing that early diagnosis of PSP and actually a lot of the neuro diagnoses seems to unfortunately come way later than it should because the early symptoms can be attributed to a whole array of other causes and most doctors aren't knowledgeable enough , don't come into contact with enough pts with PSP and the other atypical illnesses, etc. ..... ( I'm going to be way more kind to doctors here than I feel they actually deserve ! ) I remember my sister telling me in 2012, before I accidentally figured out that she had PSP, that she had thought she had Alzheimer's ! Since then, the only doctor we've encountered who has any working knowledge of PSP, is A's local neurologist and a neuro. at Columbia Presbyterian Neuro. Ctr. in NY City where we went for the official pronouncement of her diagnosis . Prior to this, A. had been misdiagnosed by other supposedly qualified doctors ( one who is a highly touted neurologist in the field of Parkinson's disease !) as having a form of depression. Well gah !! Pretty "depressing" to be beset by the chronic symptoms of emerging PSP !!! So here we are, further down the road five years later doing the best we can, like so many others, given this blanking illness !!
A's health also, has recently taken a downturn ; difficult, depressing, etc. to witness and so much more difficult on her part ! I've had to face that doing what we CAN do is ALL that we can do ! I have to admit , knowing that enrages me or makes me feel helpless in a revolving door way ! I certainly have gotten a lot of info., ideas, strength, and inspiration, plus more than a few smiles from all of the contributors , carers, and people who have PSP who check in here. Has made a huge positive difference !!
So glad that Barry has you in his life ! Bet that Barry loves you dearly and I know that his trust in you is well founded !
Our first neuro said ,"awe he's just getting old" I thought he was having ministrokes when out of the "mouths of babes" this little nurse in training, mny daughter's friend, said she thought it was pd.....I looked it up found parkinsonism and made my own diagnosis, which was confirmed by another neuro....
Elise, what a lovely post. Everything you say is so true. I am shocked at the lack of knowledge about PSP. I understand that doctors don't know everything but wouldn't you think they would read up on a condition when a patient has whatever it might be? That makes me angry, that it is too much bother!
Your poor sister thinking she had Alzheimer's. I actually thought my husband had Dementia and took him to the doctor to be checked out. He promptly had a test and the doctor told us there was no way he had Dementia as he wouldn't have passed the test so easily. He was right of course, he didn't have Dementia but he did have PSP and MSA! However he should have referred us to a Neurologist looking back now but he didn't! As you say you can only do what you can do and when doctor's don't bother to help it makes life so hard.
Big hug to you. Your sister is so lucky to have you.
Thanks so much for your kind words Marie ! 🐝😊 I couldn't agree more with what you said about doctors lacking the commitment / dedication / caring / interest / whatever !! simple curiosity ? to take the time to put the question out there to their colleagues or simply use their resources to ' look it up ' !! On the other hand, there seems to be a definite culture of elitism in the medical field that works against collaboration , sharing info, admitting that there's something that they don't know ! Even tbough we're aware of this professional arrogance and jealousy in many areas of life, it's especially dangerous/counterproductive in health-care, as we can probably all attest to from personal experience !!
As I've gotten older and maybe a bit wiser ? I feel more comfortable speaking up and now that I'm the one person who's in charge of A's care, I try to remember that it's not only my right to speak up ; it's my responsibility !! The input from others here adds to my courage and conviction ! And we sure do need a whole lot of everytbing, for sure !!!!
I had to explain what PSP was to Barrys GP. I received his bill the next day. I should have been billing him for the knowledge I gave him.They care more about wealth than they do about health.
So true Althea! I am currently wondering if I should complain to our local hospital again. However I have 3 complaints to make! I complained about an issue 12 months ago and was given an undertaking this would never happen to a patient again!! It happened to my husband 5 months later! I know I can't bring him back but I really feel angry that they are continuing with shoddy practice. Then there are 2 doctors who I feel should be reported. Then there is also the CCG who hold the funding and they certainly need to receive a complaint! However I can't bring him back? Maybe it might stop them treating people this way but I very much doubt it to be honest. It is really worrying me that people who have nobody to fight for them are going to suffer if I don't do something. However I could do with someone thinking of me for a change..so what to do?
I understand how angry you feel towards the incompetence and funding refused you, I read somewhere that you can claim retrospectively having been denied when you should have received the funding, not sure I'm right but know I read it somewhere. I always wonder what help people who have PSP but no family or carer to fight their corner, almost unbearable to think about them because I almost know the answer, bet they don't get CHC funding!
Anyway I hope you are coping Marie and managing to pick up a few of the pieces as the months pass by. Doesn't seem five minutes since you were posting for, or giving advise when your husband was still with you.
Kate what is upsetting me is the way my husband was treated. He got CHC funding but too late! He was dead before we could use it!
As if that is not hard enough to live with there is also the fact he was lost twice in A&E!! I complained the first time the second time he was admitted unconscious. Had I been good and waited outside "until he arrived" he could well have died alone! Having been through this before I asked them to check again and of course he was there!
Then he had a doctor who shouldn't be one! Too much to go into. His Neurologist vanished until two days before he died!
He also had Leukaemia and was told (despite saying he didn't want to know the prognosis) that "people with what he had had a bad prognosis as most only lasted 3 months and he should be dead"!!! This from a so called consultant! So you can see where I am coming from?
Yes it doesn't seem long since I was talking about G and he was alive. It's not that long really as he only died at the end oif February.
Doesn't it make you sad and frustrated when the medics act as if the are blocks of ice, never understand why they can't pu themselves in you shoes despite all th thing they must witness.
We are ticking along, like waiting for Godo! Life is full of trials and tribulations, not too much joy but you just keep on keeping on don't you! I so miss the normal, simple things in life but am fortunate to have done lovely supportive friends who keep me out of the doldrums.
I assume incompetence until proved otherwise of the part of doctors. They are only human. They really can't admit they don't know. With PSP there is next to nothing they can do. The last neurologist visit felt like a short shift to me. He declared there had been no change when there had been. The therapists picked the change up. Medical reality is no where near anything on TV.
I think yes. The most common progression shows failures of memory and reasoning, and slower processing of information. The interesting thing is that it generally doesn't continue to get worse, but reaches a plateau and stops. That was my experience.
Stress is a bad counselor. Look for help. The experience in my group of neurological disease caregivers is that the primary caregiver CAN NOT get to everything and if I do not get help from other people it is very likely to fall into some serious accident, either physical or functional.
In parallel. The primary caregiver should have their personal area of freedom and free time, even "caregiver vacations", for example one week every 6 months.
I'll second that Althea, wise words. Do what you can whilst you can and get your house in order. I found it took a massive effort to get house alterations sorted, Wills and Powers of Attorney for finance and health, our personal finances, Ben's Advanced Care Plan recorded, equipment and health professionals all onboard, hospice involved etc etc. I'm exhausted just thinking about it. Somehow you find the strength to do these things knowing that if you don't things won't generally sort themselves. Good luck to all of you having to go through these things, pat yourselves on the back managing these along with your caring role.
You're right. I feel pretty depleted at present. Its because things are a bit quieter. When I look at all I've done single-handed for the past 4 years its no wonder.
Thanks Kate, I am getting there slowly. Much more to sort out in this thing called life. Maybe we should have made life more simple, but we all get on the wheel and when we want to get off we can't.
Just getting a telephone cancelled becomes a burden.
I agree totally , i am sure our first clinician thought he was being kind not giving us a definate diagnosis, WRONG, it just enables you to get sorted and opens doors to appropriate agencies. He has since apologised regarding his tardiness in referring to a neurologist.
We have a newly appointed neurologist in our trust, our OT was telling us that in ten years she had officially only rwo PSP patients, since the new guy has been in post she has had four referrals in as many months, interesting!
Thank you. These are great suggestions. My wife was DXd with PD 2 years ago and upgraded/downgraded? with PSP 2 months ago. Here gate is very bad, freezing is nearly constant, and I fear she will be relegated to a wheel chair very soon. She also has has severe blepharospasm, and her speech is becoming harder to understand. At the same time...she has no gaze palsy, no double vision and no signs of dementia or severe personality changes. So my only quibble is, I don't honestly know what 'stage' she is in.
Regardless, we are renovating our first floor Den and bathroom to be our Master bedroom. We have never been closer emotionally, are getting all our legal affairs in order, and we just booked a Villa in Tuscany for two weeks next summer. I am tapping some of my retirement income early, as I will need a lot less of it now, and I am going to take her anywhere she wants until we can't travel anymore. Dancing in the rain may be out, but walks with her in a wheelchair can take their place. And we just got her a tricycle/bike that she is really taking to. So I walk and she rides, and she is getting some exercise. I plan on heeding all of your advice, and I wish you strength and good luck in your scrambles.
Reading here you will see that there is no pattern. No-one seems to have all the symptoms.
My husband is very ill now and can't speak but he understands, communicates by squeezing and " thumbs up " but seems to have no dementia or personality changes, apart from being much more apathetic and tired. He was energy personified !!!
We continued to travel as long as we could. Up to Yorkshire a couple of months ago . Grab what you can !!!
I was misdiagnosed with parkensons four years ago and can still hear the doctor saying "the good news is it won't kill you".. what a crock! I wish I had those four years to sort things out.
Dear Woodcraft, if only we had known earlier. There were times when I thought Barry was being rude when I sat next to him and he ignored me. I know now it was because he didn't see me. When he slept for hours while we were on holiday I thought he was being lazy. When he didn't take part in conversation I thought he was being anti social. Now I know he was not able to take part as he didn't have the words.
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