Looking for advice!

[Strawhalos]

Happy Monday! I’m searching for a lift to help my husband in and out of bed as his condition worsens. I intend to keep him home with me throughout this journey and be his primary care giver. Any recommendations or personal experiences would be greatly appreciated! There is such a learning curve to managing and caring where CBD is concerned! Thank you and blessings ❤️

[kenh1]

My wife who had CBD was supplied with a portable battery driven hoist and a made to measure sling which because she had CBD was designed to support her whole body. We are in the U.K. And this was all supplied by the NHS who supported us wonderfully throughout. I must emphasise it was only used by care workers and Nurses who looked after my wife. My only contribution was to keep the battery charged.

[Strawhalos in reply to kenh1]

It sounds like the U.K. is the place to be if you have CBD! I’m in the US, Las Vegas and we don’t have nearly the support. Thank you for your feedback!

[David750 in reply to kenh1]

We (in Scotland) to have a battery powered NHS hoist operated by carers.

[LuisRodicioRodicio]

Hi Strawhalos!

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 years in which we ere 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. I am sending the notes-document with our experiences and our informations through internal chat.

Hug and luck.

Luis

[Strawhalos in reply to LuisRodicioRodicio]

Luis, thank you so much for the wealth of information! I will read through it!

[Dance1955]

A Sarah steady it’s great I have one only requires one carer google it if you can if not I’ll send you a link good luck x

[Strawhalos in reply to Dance1955]

Thank you so much! I’ll search it now!

[bazooka111 in reply to Strawhalos]

I researched a Sara Stedy and found the Lumex significantly less expensive -- we love ours, and it has truly made the difference. Upper body strength is required for this to work.

[Strawhalos in reply to bazooka111]

Looking it up now! Thank you!!!

[bazooka111 in reply to Strawhalos]

I purchased the Lumex on Amazon because I had the option for a refund/return. Once we used it, I found a like new on Marketplace on Facebook, and drove 3 hours and bought another one for our summer house ... and that I got for half price. The reason the owners sold it -- was he had no upper body strength. Using it on carpet floors will take some extra muscle, but not a reason not to get one, if it seems to be the answer for you.

[Karynleitner in reply to bazooka111]

We had a very similar device and were able to use it for two years. It is no longer a safe options. My husband is unable to sit on the end of the bed, and when we would raise him , his legs would contort so he could not be transferred to a chair, or get close enough to the bed to be sat Back down.

We are now blessed to have a ceiling lift. It can lift him to a Broda (wheelchair) on one side or a recliner on the other. It is amazing and really easy.

Sadly, it is very costly. We have used it almost two years now.

Best of luck. It’s not easy. ❤️👍🏽

[Strawhalos in reply to Karynleitner]

We’ve had a consultation with a company that does ceiling lifts and you’re right!!$$$$$. Yowza! Do you feel that a Hoyer lift isn’t a good long term option? The one I’ve been looking at can lift him from the floor should he fall (the lift is mobile on wheels) and has a sling. I can get him in the sling from a laying down position. I guess I don’t know what to expect down the line so I don’t know if this would be a long term solution. Thank you so much for your input💜

[Karynleitner in reply to Strawhalos]

I think the newer hoyer lifts look wonderful. They use a sling similar to the ceiling lift ( with different options for changing needs). They also have the advantage of being more portable. I love that you can use it to get him off the floor. We could of used that a few years ago. You are so smart to be looking into this at this time .

I had hoped the Sera Steady type aid would last us forever. Perhaps it does for some . Sadly, it just did not. For a while I continued to use it with help. It was wonderful for him to stand on his legs a bit, grab the bar etc. Certainly it’s a great option for as long as they can do it . I now do all the transfers alone.

Best of luck to you. We have had many devices which all served their purpose. I wish I would of been more aware and gotten a few sooner.

💜

[Dance1955]

Try Utube if you can they are not cheap but if you have a package or funding depending on where you live you should be able to get one through that 👍

[Strawhalos in reply to Dance1955]

Sadly no funding in the US🙁. I’ll check out YouTube!! Thank you!

[easterncedar]

I really liked the hoyer lift. Rechargeable battery, easy to maneuver. Unfortunately we didn't get to use it for long, and I still have it. I wish you were closer. I'd love to pass it on to someone who needs it.

[Strawhalos in reply to easterncedar]

I’m so sorry to hear that ❤️. I’m still researching but I think that’s the route I’ll be going. Blessings to you.