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Topic Helpful equipment: cup, straws, other things Go to previous topic Go to next topic Go to higher level

By VioletV On 2014.05.24 21:25
Hello all,

In response to the question on another thread, I am posting here, to leave a few links to things I've found that are helpful to my PWP.

I, of course, have no commercial interest in any of these things, they are just things I've found to be helpful. Maybe others, as well, will post things they use.

1. I recently ordered the HandSteady Cup (http://www.handsteady.com)

It makes it easier for my pwp to hold a cup steady despite tremor. Not inexpensive, but if the issue is shaky hands spilling liquids, this thing, which seems counter-intuitive, works really well.

2. I purchased wide wide straws online (on Amazon search bubble tea straws).

Fifty straws cost under $3.00. We rinse them and run them through the dishwasher, so each one lasts for many many uses. We have an enormous bag of them, it seems, and may never buy straws again. The wide straw makes it easier to draw up liquid with less pressure needed, it seems.

3. One way straws. (search one-way straw on Amazon).

These are pricier, but, again can be used many times over. The advantage here is that the helper can start the liquid up the straw and since it doesn't fall back down the person who hasn't much mouth-strength can begin to drink.

4. Not for drinking -- but another thing we've discovered.

My PWP kept tripping on the bedside rug. The bare floor was just -- depressing. I found that a yoga mat is an attractive, easy-to-clean non-slip bed-side surface. Even the high-end ones are inexpensive compared to rugs. And we found an attractive design and color that looks well in our bedroom.

5. Mattress Genie.

My PWP was waking up at night from congestion. We needed an adjustable bed, but it just seemed excessive at this point to buy a fancy electric mattress. The Mattress Genie did the trick. You put it under the head of the mattress and pump it up by pushing a button with the included (and noisy) electric pump. It lifts the head of the bed, deflates silently with the push of a button. Works like a charm.

Hope this is helpful.

VV

By Mary556 On 2014.05.25 00:30
Wow! Thank You Violet! I am very anxious to investigate all the helpful ideas you have given!
So happy we have this forum to find good answers to make life easier for our loved ones.
Best wishes for you and your husband.

By carman96 On 2014.05.25 10:22
Thanks! I'm willing to try anything that will make my husband's life easier. I wish I had something to share but can't think of anything right now. Hope others can share more ideas that have worked for them.
The yoga mat idea is genius!

By jcoff012 On 2014.05.25 14:34
Wow! Great list...I printed it out to use in the future...I agree about the yoga mat...a stroke of genius! Thank you, Violet. I will post more ideas when we find something of value.

The only thing we can suggest is to make a small "meds" pack which contains all of the information you would need in an emergency...Lists and/or samples of all meds, including times given and dosages, allergies, home address, address of doctor and neurologist, date of last appointment, and any pertinent notes about swallowing difficulties or sleeping problems, etc...We also put in and update a list of family contacts, which includes email, cell and home phones and addresses...Each time Carl has a change of meds, we update it...This is placed in both his truck and our car, in the map slot of the driver's side...that way, we are able to just grab it and hand it to someone at the ER or it can be used whenever help is needed. Hugs. Jane

By dans316 On 2014.05.25 20:40
Jane,

Pa has a program called the Yellow Dot Program, it is to assist citizens in the "golden hour" of Emergency care following a traffic accident when they may not be able to communicate their needs. You fill out medical information for those who may be traveling in the car and keep it in the glove compartment. There is a Yellow Dot sticker that is put on your rear window, this alerts EMT's etc. that your medical info is in the glove compartment. I don't know if other states have the same type of program, but thought it was a good idea.

Dan

By VioletV On 2014.05.25 20:57
Jane,
There is also a kit from the National Parkinson's Foundation called Aware in Care which includes handouts for hospital staff, fact sheets about PD and the importance of timing and precision in medication and other information to help caregivers support a PWP while hospitalized.

Here's the link: http://www.awareincare.org/
It's free. We keep it in the car, and have added a couple of doses of pills, straws and the information about my husband's pills and the contact info for his doctors.

VV

By jcoff012 On 2014.05.25 21:01
What a simply great idea, Dan! Something as simple as a dot on the windshield! I am going to ask around and if CA doesn't have it, I will see what we can do! Thanks, Dan...I just spent the last hour filling out our 2014 forms for the "bag" we have...Funny how it is so simple to update, but I kept putting it off!

Hugs and love to you and June. Did you see the wall hangings Carl made? Took him a long time, but he did them and I posted them to FB earlier...Like I have said before, funny how so many men with PD are creative and seem to relish woodworking...Jane

By makrivah On 2014.05.25 22:13
We have the kit bag from NPF too. Sturdy, easy and hospital staff are used to seeing it.

By moonswife On 2014.05.26 05:34
We have stocked the Aware in Care Kit with one week of pills, and an extra DBS programmer. Found most ER's do not have access to all Rx immediately, and everyone knows the mantra. "Each med on time, every time, with the right food, in the right quantity". Sure do wish CA would follow the lead of PA with the yellow dot for the paramedics.

By dans316 On 2014.05.26 09:58
The Yellow Dot program would be even better if it was available in all 50 states.
Here's a link to Pa's program.

http://www.yellowdot.pa.gov

Actually I had never heard of the program until browsing the Pennsylvania web site, I don't remember ever reading about it in the papers and really don't ever remember seeing another car with the yellow dot sticker.

Dan

By Mary556 On 2014.05.28 23:50
Grateful for info re: Aware in Care kit. We did not know about that yet, but will now request one for my PWP Mom. Thanks, Violet.
Ditto the Yellow Dot program. It is available in our state but we were not aware. Thanks, Dan.

It is good to be prepared. A couple weeks ago I had a sudden episode of uncontrolled bleeding (from a varicose vein - who knew)... after 15-20 minutes of not being able to stop the blood, feeling weak and starting to think I might black out, I called 911. A kind policeman and paramedics got me back on my feet. My Dad and I wear "Medic Alert" tags for our medical conditions but had not thought to get one for my Mom's PD. After this incident, it seems like something good for her to have, should her caregivers ever be incapacitated.

Similar to Jane's suggestion, both of my parents have a chart of current meds. We print it out weekly and keep it on the table so doses can be checked off as they are taken and we doublecheck one another. The few times when we have had to call for ambulance/paramedics, it is very helpful to have that info all in one place, ready to hand to them, instead of scrambling to organize quickly under stress.

By parkinit On 2014.06.04 23:23
Violet -

Bless you. My husband has frequent issues sucking fluids up straws. We will try the straws you mentioned!

By dans316 On 2014.06.05 10:03
In checking out the straws Violet mentioned, came across one called Hot Straws. They are actually a "double" straw made of a hard plastic. They are flat and June seems to do better with them. Nice part about the company is they donate 5% to Parkinson's Research. Straws are not cheap, about $2.50 each for a 7" straw.
They also make a 9" straw. They are dishwasher safe, but I just rinse them out.

By Mary556 On 2014.06.10 00:32
the one-way straw works very well for my Mom (who has weakness but no tremor). thanks so much for that recommendation! I chose the ARK Therapeutics kit with a removable "select-flow valve" that fits any standard straw. We will be able to dispose of used straws instead of cleaning them; this seems to be the easiest, most sanitary and economical choice for us.
with this system the caregiver does an initial pump to fill the straw within an inch of the top, then every time PWP sips, more liquid is syphoned into the straw. It could not have been easier for my mother. What a blessing! We are very happy.
the "Sip-Tip" cup with select-flow valve is sold directly from ARK Therapeutics website. (Sip-Tip currently at Amazon has the straws with built-in valves.)

By dans316 On 2014.06.10 10:15
Mary,
Does your mom use the one way valve straws to drink sodas?? In reading about them, they caution against using them with carbonated drinks, but never offer any explanation why??

Dan

By Mary556 On 2014.06.10 23:25
Aloha, Dan. God bless you and your bride.

This is the cup my Mom uses for everyday water and occasional soda:
http://www.amazon.com/dp/B004BXQKQA
It is good for a person who has weak hands, but for someone who has tremor might not be the best option. We fill halfway and then replenish. The cup is lightweight enough for my mother to maneuver and its handle helps to keep her hand steady. We;ve used this for very warm water but would not recommend for drinks that are hot enough to burn. After about a year of use our cups started to get hairline cracks and needed replacement; I'm trying to be more gentle when washing them now.

We've used ARK's select-flow straw valve twice so far. I saw that advisory about staying away from carbonated beverages but do not know the reason why.

My Mom has started to have low blood pressure after eating breakfast and during those episodes she is too lethargic to drink from her cup or a regular straw. the one-way straw works much better than spoonfeeding her coconut water. We may invest in more valves. They will pump from inside a recycled 16 oz. honey (or mustard) squeeze bottle, as long as the top is fastened tightly; the straw fits through the opening in the cap.

By parkinit On 2014.06.17 23:38
Violet,
I purchased the one way straws and they are awesome. They also make a stainless steel valve to insert in your own standard sized straws that can be cleaned as the one ways are truly not for reuse. Thank you for all your helpful tips. We used the mattress genie for awhile until we purchased sleep number beds and now he has a hospital bed which is even better as the controls can raise the whole bed for an easier time for us caregivers backs.


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