Standing frame thoughts

[Hdee]

Hi everyone, My lovely mum is in a nursing home and this cruel disease has begun to take her voice, lots of words now I cannot understand and it is heartbreaking, I made a big print alphabet card to try and encourage her to spell out words but due to her vision and difficulty controlling her hands she is unable to use it.

Mum’s carer at the home has suggested buying a standing frame for her (please see the photo for the one she sent me to investigate) she has a walker but has falls and her mobility is obviously decreasing. I was wondering if anyone has used one and if there are issues with them due to the unique issues that people with PSP face.

Sending love to you all and hope things are going okay for you wherever you are on this journey.

Thanks

Helen

[Hidden]

Hi Helen... l have not seen one of these before. So l am no help today . Just want to send along some hugs for your day!

[Hdee in reply to Hidden]

Thank you! Hugs to you too xx

[Doublereeder]

Is the OT able to suggest one for you to buy given they are probably unable to provide one for your mum? Good luck!

[key4u]

That walking frame looks interesting I’ve never seen it before.

For carers use our physio supplied a Sara Stedy but because it had a seat but we also wanted something to keep legs strong we got a Molift Raiser and stood on it for long periods for exercise it is great for moving someone around . Later on the physio supplied a powered stand aid Liko Sabina II again for carers to use to do their job safely.

We also used cycling pedals to train legs.

[AnneandChris]

Hello thereI must admit, I too have not seen one of these.

We had a walker, but for safety reasons Chris was then pushed round in a wheelchair and we had a Sara Steady to help him up and down from chair, bed, etc. etc.

If you're in the UK your physio and OT will be able to advise and supply whatever is needed.

Good luck, keep on keeping on

Hugs

Anne

[Indiana-Girl]

Good morning! My husband has one like this and it is called an Upwalker. It is a godsend. He feels safer and more secure using it than he does his normal walker. Although he has now declined to the point where he can no longer walk, I am so thankful that he was able to use his Upwalker while he was able. We took many walks around our neighborhood and he derived great joy from the independence it offered him. It also helped, I believe, to slow down the progression of this disease as he was active for longer. I highly recommend this for anyone who needs a walker for any reason, but especially for PSP/CBD victims. As you mentioned , his voice and ability to articulate are now almost gone and we generally communicate in one or two word sentences. This is a horrendous disease, robbing the victim and the loved ones around them of any semblance of a real life. May God bless you and your beloved as you walk this long, dark journey. It is only through Him that I am able to continue each day. He who gave His son knows of our struggles. You are not alone.

[Indiana-Girl]

This is the Upwalker. It can be adjusted for height. You can’t see in this pic but It wraps around the person using it, giving them greater stability and security.

This is a picture of the Upwalker my husband used.

[Beads0122]

Helen,The slow decline in speaking volume for my wife was the one of most painful aspect of this cruel disease for me to see. She loved to talk. Initially a speech therapist was able to help her with the LOUD program, however the results were only for a short time. At the same time her congestive decline made her unable to use iPads or computers to communicate also. It got to the point where simple head nods to yes/no questions was the extent of her communication.

My heart breaks for you. Cherish these moments with your mum, although they may be in silence.

Bobby

[LJsato]

Hi Helen,I wanted to share a technique that helped me communicate with my mom when she lost her ability to speak clearly. I started having her hold up her fingers as a response to yes or no questions- 1 finger for yes, 2 fingers for no. Obviously it limits what she could communicate but it was incredibly helpful to at least understand what she needed or how she was feeling.

Another helpful technique that we could use when she was feeling more energetic was to have her say one word at a time and I would repeat every word back to her as she said it. This took a lot of patience but it was very effective during certain moments and empowered her to express herself beyond yes or no questions.

I hope this helps you and your mom

Take care,

Laura