Recent diagnosis for PSP

[Donnelly123]

My mum has recently been diagnosed with PSP and we are awaiting a meeting with the neurosurgeon and occupational health. Whilst I have done quite a lot of research and know there are challenges ahead, has anyone got any advice please in what to do in the early stages of the illness as she is falling down quite frequently. Thanks in advance.

[Dolly9to5]

Sorry to hear about your mums diagnosis , thinking of you xx My father also had PSP. I’ve been thinking about what advice I would give . I think in the first instance I would think about what adaptations you can make in your mums house to reduce some of the risk of falling - handrails, bath stool, maybe a ramp . In my local area the local authority has a team that come out and carry out an assessment and provide some of this equipment for free. If your mum lives alone I would also think about paying for a device that she wears around her neck , just like a tiny pendant. If she fell and was alone she could press the pendent and it would be routed to a helpline , they speak to her through the device and then the helpline would ring you or someone on her list and you could go round and help. Again in our areas local authority provided these devices ( we paid for them ) . I’ll keep thinking of things we did or wished we had done in the early days of diagnosis xxx

[Donnelly123 in reply to Dolly9to5]

Thanks very much for this feedback. I am awaiting a date from the care team to come out to do a full assessment but will look at all options ourselves beforehand thanks. She does live with my dad so has 24/7 support, thank you

[sherlock19]

I’m so sorry to hear about your Mum. My husband has PSP and in his case it has progressed very rapidly so any adaptations you can make in the early stages means that your Mum will become used to using them and also will future proof the house. We were advised against a stairlift for example because of the danger of falling off it. That was spot on. OTs are brilliant at thinking long term.

My advice though is less about that than actually making the most of what she can do now. Have the holidays, take the day trips, spend time with friends and family. During lockdown, at a time when my husband was more mobile, we couldn’t do any of these things. Now we can, he’s lost interest - apathy is a very underrated symptom of PSP - and it’s much more difficult logistically. The falls are a concern but if she has someone with her and if she can bear to be taken out in a wheelchair it eases the pressure on everyone. Basically, encourage her to keep doing the things she enjoys. Make the most, and the best, of it.

Very best wishes.

[LuisRodicioRodicio]

Hi Donnelly123!

If phisicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

This link could help:

parkinsonslifestylemanageme...

On august 2021 PSPA launched an interesting information about systematic exercises: “Tips for staying with PSP&CBD”.

pspassociation.org.uk/app/u...

Hug and luck.

Luis

[LuisRodicioRodicio]

Hi again Donnelly123!

I'm sorry PSP/CBD/ etc. has entered your family.

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.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself 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 phisicyan.

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 your family and if the those notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

[Cantiga in reply to LuisRodicioRodicio]

dichoso tu Luis y afortunado vivir en España el ornamento del mundo. Siempre intentaba volver a sosegar mi alma allá pero pase la vida muy ocupada y se me pegó esta enfermedad antes de poder lograr el deseo de me corazón. Hace poco la hija mía me ha jurada que cuando cierro mis ojos ella se viajará a España en memoria mía.

[AnneandChris]

Hello there

So sorry you need to join this forum.

May I suggest you put in place LPA's for both health and finance for both your parents. Also some health authorities have an Advance directive which indicates how your Mum would prefer to be cared for as her condition deteriorates. It is much easier to put these in place whilst your parents are fit and able to do so.

If you get the chance to bank your mothers voice please do as it will help when she looses her speech. My biggest regret is that I didn't do this for my husband.

I agree, if you can modify the home, it will make life easier in the long term.

Please do not hesitate to ask for help here, there is a wealth of information from those living with PSP or others who's journey has now ended. It's a hard journey, so please make sure your Dad gets plenty of support. Keep on keeping on. Anne x

[DoingwhatIcan]

Hi there... so sorry you are here. I would definitely second all the advice above - but above all, make the most of what you can do now while you still can. Trips out might be getting harder, but do them while they're still possible.

My other advice is much more difficult - if you can bear it, you need to have those heart wrenching conversations while you still can - would your mum want a PEG when her swallow function goes? Would she be happy to go to a home when she gets further down the line? All these conversations are much easier to have when you can both talk and express emotions. Obviously things might change over time, but laying the ground work now will help no end. I wish we had done this for my dad.

Good luck on your journey xxx

[key4u]

Very sorry to hear that. Early on I think its important to constantly remind your mum that moving is risky and to think and move carefully. Some falls can be from instinctive moves like to rush to answer the doorbell or to run out to the garden to pick something up that had blown over in the wind.

[Koalagal]

Hi there. We have now booked a home assessment with an Occupational Therapist to come and review their bungalow to recommend what adaptions they need in order for Dad to stay here as long as possible. We are 6 months in from diagnosis and only now are my parents (ie, my Mum) really coming to terms with this requirement. However, it is a great step in the right direction and hopefully the ball is now rolling.

Through the Community Neuro Team we are now 'in the system' but we have chosen to privately pay for this assessment to expedite the process. We strongly believe we will need to significantly remodel his bathroom and we can't afford to wait too long for reports, builders quotes, possible planning permission, etc. We dont know how fast his PSP will progress. So we have not been referred to the next stage yet - we will get the report first and likely end of doing this privately.

If you want to go down this path google Royal College of Occupational Therapists and they have a directory - you will find some in your wider area.

We have also bought him a riser recliner armchair so that he can get himself in and out of his seat more easily.

Other things we have now done is apply for a disabled parking blue badge for when my mum takes him out. And applied for a carer's allowance for her - it's not much but with all costs of living going up it will help. Neither of them has come through yet and its been a few weeks, so I would get onto it sooner rather than later...

Good luck x