Floppy feet

[rick/Wpg]

That is good advice Rose! I started using a cane before I thought I needed one ...thanks to my wife It saved me many, many times! Then did the same with the walker and then the power chair! We try and stay ahead of the curve with all of the equipment.
It is easy to try and stay independent ...but put yourself at physical risk!
Each new piece of gear helps , but at the same time is sad cause it shows the progression of the illness. Joan and I have a routine now whenever we get a new piece of equipment...Joan goes over and gives it a good kick - then we thank God that we have it
We have another big step coming this week as the hospital bed is supposed to be here tomorrow - that one will get a few kicks! Then we'll figure out how to snuggle in a hospital bed

 

[BarryG]

Thanks everyone and especially to you Rose for "expanding" my thread and making it much more than it stared out as. No one else has noticed that I am walking funny yet but it does feel strange to me and I have asked others to slow down when we're out walking which is definitely Not like me. I have always been out in front on any hike and it really takes some getting used to. I'll ask at the clinic about AFO's and what options I have when the time comes. And then I'll give them a good kick! By them I mean the clinic people, not the equipment.

 

[rick/Wpg]

Hey Barry...LOL....love your attitude!
Kick what you can while you can!
Rick

 

[hopingforcure]

Hey guys, I'll never forget when I had surgery, which Ive had many in my married life, my husband was lying on the bed, and I was sitting in the chair. Well a really loud and not so nice nurse yelled very loud at my husband that the bed was for patients only.. PERIOD.
Well my husband and I said I guess we will get the last laugh when I get my hospital bed, he will lay in it alone, and with me both. He will be a regular rule breaker...So Joan I am counting on you and Rick to learn how to snuggle together in that kickable, but comfortable and useful bed.. Keep keeping ahead of the curve in the road.. And remember we may get a positive curve soon, with treatments..

 

[Micheline]

First off AFO- it was recommend by my neuro for ankle stability when transferring, so I saw my ortho. and since i am in a chair 24/7 now that it would be a waste of money ($600.00 each). I wish it was done earlier, when I was walking but lost my walking ability in a few months, so hindsight is 20-20.

Now, we have a conference meeting with the OT, PT, Nurse, and homecare. My OT keeps asking about our bed. :sad: We have this wonderful king size that has been taken off the frame now. She is a great OT, I should have some ceiling lifts put in (she's hoping within 1-2 wks). I know she is looking into the future, but very hard for me to think about that. I have 3 pressure sores on one foot, can I say ouch! They haven't broken and are healing slowly. I have been waiting since Dec. for my wheelchair and powerchair. (darn insurance company) ok, i wanted to say worse I'm rambling, bye.

Micheline

 

[rose]

About the beds.... Rick's snuggle comment got me worried!

Seriously, never thought about the bed thing until now really. So, I searched online, and there is an outfit that offers queen sized adjustable beds. I read some information saying the difference between a hospital bed and the wider adjustable beds was they were referred to as "bariatric" beds (?) I guess because the bed can support the weight of two people...? So, comparing them, the ones that can be height adjusted as well as the foot and head raised and lowered, were called transfer beds. AND it added about $2,000 to the total cost. I saw one called "Transfer Master Original Queen" ....How important is this feature? This thing costs about 6K. That is a lot! but is saving a few thousand, to give up the flexibility of changing height, worth it?

 

[hopeful warrior]

We were recently sent to the New Balance store by the gentleman who made Greg's AFO's. Greg bought some of the "box toe'd" shoes that also velcro instead of tie. He LOVES them! He was wearing Ecco shoes and said these new shoes made all the difference.

 

[rick/Wpg]

Thought I'd do a quick follow up on the new hospital bed...it was rather intimidating at first ....it got several kicks...but....it is soooo comfortable and makes life a lot easier! The head and foot raise and that is a big help...and the whole bed goes up and down so it makes transfers to the power chair very easy. The rails on the side are a huge help as my arms are getting very weak so I can push and pull on them so it makes it a lot easier to roll over and shift arround in bed.
And...most important...we have the snuggling issue figured out