Getting outside help.

I am learning as I go. I don’t know how to go about finding help for my husband. Such as ,does he need a hospital bed? And other medical technique’s that could make his life easier. Can someone please share their experience in this area?

[DoingwhatIcan]

Hi laurel… are you in the UK? If yes, I think your best bet is to arrange a visit from an occupational therapist via your gp. They can arrange the equipment needed. Things will change over time, but from reading this site I can see that times really do vary…. OTs will tend to come out at intervals to reassess.

Good luck in navigating it all xxx

[Hidden in reply to DoingwhatIcan]

Thank You!

[Hidden in reply to DoingwhatIcan]

And I am in the USA. 🇺🇸

[DoingwhatIcan in reply to Hidden]

Ah sorry! I don’t know how it all works over there

[Hidden in reply to DoingwhatIcan]

That’s ok. I’ll find out. Thank you so much for your response! It’s always needed and appreciated!

[AnneandChris]

Hi Laurel

Welcome to this site, so sorry you have the need to be here. It would be helpful to know where you are as what is and isn't available varies from country to country.

Here in the UK we have our wonderful NHS with SLT, OT, Physio and wonderful community nurses, all of whom will help you and advise you on this journey. OT and Physio will advise on equipment and arrange the supply of what is needed which varies from individual to individual.

It is a tough journey, unpredictable at times, but be assured you won't be on your own. There is a mine of information here from those, like me who have finished their journey, and others like you who are just starting out.

Keep on keeping on, you will get there.

Hugs

Anne

[Hidden in reply to AnneandChris]

Thank you! I am in the USA🇺🇸

[Northstar1]

Hello if you live in UK ask your GP to refer your husband to Community Matron service. The can make all referrals, apply for CHC funding, get a hospital bed etc. .Hugs x

[Hidden in reply to Northstar1]

I am in the USA🇺🇸 I think things are different here. I think I may need Homehealth to come out again.

[WifeLilyRose]

If you’re in the U.K., the key person is the patient’s GP who is ultimately responsible for the patient’s welfare. He / she should set wheels in motion ( and also alert your local social services dept. ) You may have a local carers’ network who can give support and guidance. Also the PSP Hotline will be practical and helpful. Here in Kingston upon Thames there is support but the whole system is underfunded, overworked and there is no joined up thinking. My husband is at home in later stage PSP + Pulmonary Fibrosis. One has to become the expert and “ fight” for everything! We now have CHC Funded 24 hr care but that is whole other story! In our case, my daughter and I had to find out everything for ourselves and fight, fight, fight!

Sorry to sound depressing but educate whenever you can about your husband’s illness and get on board any family and friends to give you much needed support and “ respite.” X

[FrazRin21 in reply to WifeLilyRose]

Hi,Interested to hear that you have CHC funding. My Mum has late stage PSP and they now have a 24 hour live in carer (my Dad also lives there but is physically unable to care for my Mum).

We applied for CHC funding and it was rejected for the live in carer, they said it would only pay for nursing care, if we admitted her to a care home!

Do you think it is worth appealing, if there is such a process?

Thanks!

[Hidden in reply to FrazRin21]

I think I would!

[Northstar1 in reply to FrazRin21]

I would it's your mum's choice and family choice to stay at home. Try Farley Dwerk Solicitors. I havent used them they are specialists in CHC. They have specialist nurse consultants you can pay for advice think it's around £100. Also try Beacon.

[FrazRin21 in reply to Northstar1]

Thank you 👍

[LuisRodicioRodicio]

Hi Laurel1995!

These are our experiences:

If when the patient falls you have to get him up and is dead weight check with the Physio’s and OT´stransfer techniques and consider a gadget like a Sarah stedy:

youtube.com/watch?v=vKfPCGR...(Not working as expected?)

Sometimes the patient fell would panic and be totally incapable of getting up. If you make the patient comfortable with a cushion and blanket and let lie there for a little while you could calm down and would then be able to follow instructions and made slightly easier.

Do not exert yourself. You risk serious injury. Preferably ask for help.

Use mechanical wheelchairs with seat belt and anti-bedsore cushions (our anti-bedsores cushions: SYSTAM and JAY - Sunrise Medical Ltd or similar). Make suitable changes in the bathroom. Set up handrails on each side of the bed. Make use of an articulated bed. Also use a plastic wheelchair (type ETAC) special for hygiene and shower.

During the time that the patient was not in bed, we used an articulated chair (power recliner) with an anti-bedsore cushion that allowed the legs to be arranged horizontally.

To transport the patient we regularly used a wheelchair since June 2016 (abrupt decline four and a half years after the onset of the first symptom and after the hip fracture and the corresponding surgical intervention). The wheelchair is made of aluminum and is foldable, easily transportable in the car trunk (aluminum wheelchair is Ergo Lite 2 from KARMA Brand or similar). Weight supported: at least 70 kilogram.

“Racinlady” (2021-01) suggests a Lumex stand assist that will be a back saver for you and a life saver for your patient.

youtube.com/watch?v=Jq-nc59...(Not working as expected?)

After each fall episode I have perceived a greater fear of falling which produces greater rigidity and some distrust towards the caregivers.

Hug and luck.

Luis

[Hidden in reply to LuisRodicioRodicio]

Ty for info. Everything helps! 🥰

[LuisRodicioRodicio]

Hi again!

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

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 "trial and error" method, 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 Iam sending you the notes-document with our experiences and our informations by the private mail of this chat.

Hug and luck.

Luis

[Sebuly14]

Laurel, my husband has Corticobasal Syndrome. He had an occupational therapist come to evaluate our home. He made recommendations for equipment and home modifications at different times as the disease progressed. He recommended a hospital bed when it became difficult to transfer him from the bed to Sara Stedy. We have had Sara Stedy for 2 years and it makes a huge difference doing transfers. He also made recommendations for a shower chair, grab bars, braces for his hand and arm, and Botox for his fingers. Hope this helps you.

[Hidden in reply to Sebuly14]

Thank you so very much. I am in USA.

[Sebuly14 in reply to Hidden]

I am also in the US in Michigan. Ask your neurologist for an OT referral, it’s worth getting expert advice!

[Hidden in reply to Sebuly14]

What is OT ?

[Hidden in reply to Hidden]

Occupational Therapist?

[Sebuly14 in reply to Hidden]

Yes, occupational therapist. They can provide guidance now and in the future.

[Hidden in reply to Sebuly14]

Thank You!

[oilman1]

Have your neurologist put him on hospice. You will then be able to avail of the services provided by the multiple companies available. You will interview and pick the company that you feel the most comfortable with. Once on hospice, he will be provided with everything that he needs at no cost once your deductible is met. My wife had a hospital bed, rolling commode (recommended), wheelchair, diapers, wipes, etc. etc.

[Hidden in reply to oilman1]

Thank you so much. I need to check into this.

[Martina_MP]

In the US, Home health is the right idea. Get a referral from his doc. Then the agency should include a nurse, physical therapist (PT), occupational therapist (OT), speech therapist, for several weeks (6-8 wks often), and they should all assess your husband, and ask them what you and he will need to make your life easier. Make a list of the difficult areas, such as, getting out of bed, up and down on the toilet, nighttime toileting, walking etc so they know what the issues are. Also you can ask OT to teach you both how to help him get up off the floor after a fall. They can also talk to you about equipment which may be covered by Medicare. You don’t need everything at once but it is good to anticipate a bit. Sometimes it may be easier to buy things privately and a lot can be found inexpensively on Craigslist or Nextdoor.Hospice does give you free equipment but if it turns out he’s too stable for hospice later, and they take him off, they may take it away.