I'm new to this blog thing and am making my way around the site. Hopefully someone will get to see this.I'm Leosta and I'm caring for my husband aged 83 who has PSP-P. Well, we think so because the doctors say as he's not responding to Parkinson's medication it must be PSP. Certainly he has all the symptoms. This first manifested itself in 2018.
This past year his decline is noticeable. I have to do everything for him. I support him when he shuffles with his walker and try and sit him down gently because he cannot bend and falls straight back. He's now reached the point where twice in the last few days he's been unable to move his feet and legs and gain his balance without falling backwards and has had to stay in bed.
I think he needs palliative care but our doctor says he's not entitled.
My question is: is there anyone in a similar position who lives in France and can they offer guidance? I'm a bit lost.
Thanks to all the people who post, I've read lots of interesting messages, and it's given me a lift that were not the only ones in this situation.
Stay strong everyone.
Leosta
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Leosta
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As far as contacts or associations in France are concerned, he cannot contribute anything.
Let me offer you some suggestions:
PSP is a disease that is little known by medical science and it is hard for the patient but also for the caregivers, especially the caregiver who directs the different situations
I have been collecting experiences that I think can be useful to caregivers. It is somewhat depressing reading, but ignoring the possible realities does not solve the problems or make them more tolerable.
Regretting that this disease has reached your family, I offer you our experiences in the hope that they can make your trip more bearable.
Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.
These kind of diseases manifests they self 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 support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.
I am not a physician.
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 the patient and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by email because the private chat of the organization has limited the sending of texts to 33,000 characters and the documents mentioned are notably larger. Sorry.
The following information has been updated several times and may be more interesting than what published 1 years ago.
If you are interested on specific PSP problems, related pictures or videos as:
-Video mp4 (200MG): Adaptation of a WC to a PSP patient.
-Accessories for a PSP patient. jpeg pictures
-Communication panels. jpeg pictures
-Symptoms and Stages of PSP_version 29.docx
-Symptoms and treatment suggestions for PSP patients (version 2023-05-02)
-Diferent types of PSP_v10_2021-07.xlsx
If you are interested, please, send a private message to:
Hi Leosta, read de documents and follow Luis's advice. Particularly the excel with the symptoms. My sister was diagnosed as Parkinson's for 10 years.
Thanks to a paper I've found from a doctor in Madrid, we went to a diagnosis of PSP-P (2018). Now a little more is known about PSP. Now, her GP doubts what her disease is because she is still lucid, oriented in time and space. Since 2019 she is tied to a wheelchair. Actually tied, if not, she has the impulse to stand up and then falls. She has a lot of scars in his head. They're going to do a DNA test. She is assisted by a phoniatre once a week and a physical therapist 3 times per week. I'm not a physician but a scientist like Luis. We deal with papers and scientific information daily. That's all. Do not hesitate to ask your practical question to be hable to manage your husband illness. Good luck! Hugs!
Hi wear1947 is you sister on Hyoscine Patches to dry the mouth? My wife would do exactly the same and stand up and fall until we stopped using the patches.
Hi Zerachiel, no she doesn't use them. As long as I know Hyoscine hydrobromide will help to prevent the formation of respiratory secretions but will not have any effect on secretions which have already formed. She has not any excess of secretion. Indeed.
Bravo Leosta! Je t'aime beaucoup votre 'attitude'. I also am a PSP sufferer, male aged 81, diag 5yrs ago. I have written many of my experiences in 3 pages of A4, with some main suggestions and useful contacts. My key items are exercise, diet, therapies and supplements. If you like I will email these, but need you e-sddress to do so, pls. PSP = Please Stay Positive! Best wishes TimbowPSP xx
my husband had PSP, he was french and I really struggled to find any help , he died in 2019 so maybe things are improving. There is a PSP facebook page where you may find more up to date information
There is also Association PSP France, I don't know if there are any meetings now, I went to a conference at the CHU in Bordeaux held by them. I also found some comfort through the local Alzheimers group , there was an english group near me, could be worth looking for. If you speak french it should be even easier to find one. I do but I had friends who attended the english one.
Do you have nurses to help with showering ? We had nurses who came in mornings to wash and dress him and evenings too, I still had to do some but it really saved my sanity having that help and someone to talk to if I was worried about anything. I got a prescription off the doctor for that and then arranged it myself.
This forum was the thing that helped me the most though, it kept me going when things were getting too much.
Wishing you lots of "bon courage" and sending you a big hug as I know that is something all carers really need !
Bonjour Dawn,You've no idea how much it has lifted me to receive your message - someone in France. So sorry you have lost your husband to this cruel disease.
Our doctor says my husband isn't entitled to nurses as he doesn't need "soins '.
I'd like to know which organisation you contacted for nursing help.
We had some idiot round from SSIAD at the beginning of this year, who said my husband didn't qualify and made ridiculous suggestions for completely redesigning the house - not possible.
They said we could apply for APA which we did, but all they could offer was ADMR or Croix Rouge and according to our French friends , who've had experience, they are not qualified enough for someone with PSP. My opinion too. Also APA would only pay 20% of the cost.
I think my husband is entitled to 100% cover as he has an ALD. Do you know anything about this ?
my husband had 3 ALD's as he had bowel cancerand heart problems previously and then PSP but it definitely qualifies as an ALD . His GP was very understanding, so it was through him that he got the ALD status, there is a form that has to be filled in and sent off . I t was also him that gave us the prescription for the nurse care , and I contacted the local nurses and arranged directly with them.
If your doctor is reluctant, you may need to turn on the tears and say you can't cope any more and really need help ! I didn't need to do that but did get close to the edge before asking for help, don't wait any more and if he offers you antidepressants accept (up to you then if you take them or not) it will show that you are desperate.
I had a look at the PSP asso but it looks like not much has changed, they are more axed on research than helping . You could maybe try France Parkinson , they seem to organise more things for the "aidants" , ( franceparkinson.fr/associat... ) and as I said previously, I found some help through France Alzheimer. ( francealzheimer.org/charente/ ) It was just a coffee morning once a month in Bergerac but nobody was shocked to talk about practical things like having to use adult diapers. And we talked about normal things too, not just the illness. And if you can't go to any meetings they also have help lines.
We had APA 50 euros a month to help pay for the diapers. And an invalidity card for parking from MDPH , do you have that ? The other things we got prescribed by the doctor were a wheelchair, a hospital bed, an air mattress and towards the end a "leve personne" as I could no longer help him at times from his bed to the wheelchair but for all that to be covered 100% you need the ALD.
There is a private message chat on here if you want to contact me .
Hi again,My husband had an ALD for previous cancer treatment and his prescription says ALD for the medication relative to PSP
I presume the Dr has extended it for this illness. Will have to check on Amelie.
He has a medical bed and commode. Could have a wheelchair but hubby has terrible balance and trouble turning, and unfortunately there are plenty of small steps in our house so getting him in a wheelchair would be difficult.
Up to now we've managed but he's got worse these last few days and I can't get him away from the bed
An air mattress could be helpful.
I can't find private chat. Can you guide me as to where I find that? I've read the Help. It says click on the double bubble. Can't see one.
Think I'm losing it completely. I used to be on top of things, and now things are on top of me.
if you click on the name of the person you want to contact, it will send you to their hub and there is a button then on the right where it says CHAT . That allows you to write in private . Like an e-mail box.
I'm in France and my dad had PSP. He passed away last June. He had been sick for 6 years and was diagnosed last year with PSP. Like Dawn, I'd suggest you contact PSP France. They can help you figure out the paperwork you would need to fill to get help from the government (APA support payments, medical equipment for your home, etc.) if your husband is eligible. Where are you located in France? Funding and type of care available for the elderly is managed at the department level. You can message me directly with specific questions and I'll do my best to answer.
Thank you so much for replying.Sorry too that you have lost your father to this awful disease
If you can read my reply to Dawn you'll see we've already been down the road for applying for APA, which he can get, but they'll only pay 20% towards the cost.
They offered 1 person for 45mins in the morning at a cost of 450 euros. Given that my husband now sleeps up to 14 hours he doesn't "do" mornings. And even when he wakes he's unable to move for an hour or more.
This last week he's been unable to move off the bed, so he needs at least 2 nurses. We're not in a good situation.
We're in the Charente by the way.
I've tried to ring PSP France but they're only there Saturday for a few hours and I keep missing the time slot !
What help did your father get ?
I'm pretty sure that as PSP is classed as an ALD he should be covered 100 % by Caisse Maladie. Have you any information on this ?
I just read what Dawn wrote. It looks like she posted around the same time I replied to your initial post. She has given you great advice! I think you've been doing all the right things so far. I'm mightily impressed. You're in a foreign country, and probably one with the most red-tape on earth, and you're advocating for someone with a rare disease. So, first, be kind to yourself. You're doing awesome work!
From what you're saying, it looks like your husband's PSP has been identified as ALD by his doctor. If you need to take him to appointments, ask if he can get a "bon de transport", that's a slip that pays for his taxi (it has to be "conventionné", licensed for medical transport) and he would be allowed one accompagnant.
Are you alone doing the heavy-lifting at home? There were 3 of us siblings and my mom taking care of my dad this past year, and it was really tough. We had nurses come every morning for medications and check-ups and every evening for his shower. We also had a carer that came 4 afternoons a week mostly to do some cleaning and sit with my dad so we could run errands outside. You will need help. The social worker assigned to his case when we applied for the APA gave him 62 hours a month for the carer, of which we had to pay 1/3 out of pocket. The rest was covered directly by the APA. You should be allowed to adjust the schedule. If mornings don't work anymore for your husband, the care provider should make changes.
By the way, my dad received a GIR2 score on the scale of "perte d'autonomie". Check your husband's. The lower the score the more help he will be entitled to receive. If he is anywhere above 2, ask for a new assessment. I can send you a template letter for this. Besides the great associations Dawn mentioned, you could also try and see if there are volunteer associations in your area (like Petits Frères des pauvres) that could visit you. If you speak French, there's a great association for caretakers dealing with neurodegenerative diseases: brain-team.fr/aidan/ They provide online training and specific information (not only medical but also legal advice).
Again, you've been doing a great job taking care of your husband in France. You're doing your best and that takes love and courage. I'm sincerely impressed!
Please be kind to yourself. Get outside help. Go for walks. Take time for yourself so you can have energy for you and for him. This disease can be an emotional tsunami for the family.
Hi Leosta, there is very little I can add to what Dawn and Stephanie have given as specific advice concerning France. My wife had PSP, she passed away in may after 8 years since first symptom and 4 years since Diagnosis. We received lots of help be it from "assistantes sociales" for all the advice on the red tape. be it from nurses who helped us understand what doctors had to prescribe in order to get the required equipment or even services... Physio is on prescription for instance... and indeed as "ALD" you should be very well re-imbursed... I will also "stress" Stephanie's view on "associations".... there are many in france... eash town has its own set of volonteers, another name beeing "Saint Vincent de Paul". Just so that you know, in our case, we did not make use of palliative care except for some advice (which was brilliant) Its important to know, that palliative care is not just "end of life" caring its also about pain management at any stage of life. This to say that even if you are not "entilted" you might still contact them for advice. Look after yourself and find some time for yourself as soon as any helper is around
Look after yourself
Simon (you can contact me on s.ardiss@sedpa.mc if you need any specific advice)
Many thanks Simon for your helpful post. Physio has been ongoing but the guy who did home visits has now left, so we need to find someone else and that's not easy. Physios seem overwhelmed and then there's the problem of being within their "secteur".
I'd forgotten about St Vincent de Paul association so thanks for reminding me. Certainly Petits Frères don't operate in our area.
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Feeling a little bit lost...
just lost my mum to PSP 
hi all, any information about holidays abroad with PSP - especially in france?
My husband has lost his fight with this awfull disease 
Five Years ago today, I lost my David
