PSP Association
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Head Support Advice Sought

Hi folks

Liz can no longer keep her head upright and she is forever looking down.

Has anyone got experience of using something to keep the head looking forwards?

She has no pain when I lift her head back. She just can't keep it there.

I will be telephoning the Neuro OT tomorrow, but it would be good to draw on folks experience here too.

Thanks

Kevin

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Sorry Kevin not got that problem xxxx

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How distressing, Kevin. I hope the OT can help. The problem has come up before. I believe folks have recommended those u-shaped travel pillows. We had a reclining wheelchair that had a "moustache" neck support, they called it, two rather thin, curved, padded wings that came down and forward from the headrest, which theoretically would keep the head from lolling but only if the occupant was tilted back at least a little. I can't say how much it would have helped. We didn't have long enough with it. Best wishes and hugs, Sarah

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I also have the tilt recliner chair for Hubby, but he feels he is choking constantly and can only be tilted back slightly. The head falling forward is a problem, I use the travel cushion, as it is filled with beads and can be pushed into the correct position, with a linen cloth on it to catch the drool. The tilt recliner is the best thing I ever purchased.

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Sorry darling don’t have an answer x

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Hi Kevin. Not Jon's problem either but I had a friend with motor neurone disease who had a bandanna round his forehead attached to his wheelchair headrest. Seemed to do the job and he said he liked looking like a pirate!

Best to you and Liz.

Rosemary

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Hi Rosemary

Thanks for coming back.

I so like the bandanna idea!

I spoke to the nursing home and they went sheet pale and explained it was too much like a restraint and it might be mistaken for tying her up!

Hey ho, regulations are good, but they can so easily kill off common sense.

Best to you

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What a shame. It could look quite dashing !!!

x

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Exactly Kevin, before getting the tilt recliner wheelchair, I asked about a seat belt, because hubby constantly leant forward, and I was afraid of him tipping out, Noooooooo, it is classed as a restraint, the bandanna sounds a great idea, unfortunately the heirachy has gone haywire with rules

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Unfortunately, Kevin, Drew shares this problem with Liz. I had bought a Headmaster head support but sadly Drew's head had been down for so long that it was too uncomfortable to use. He is supposed to be getting measured at the hospital in the near future for a head support but things have been so slow recently that I don't know when that will happen. Also, he should be getting Botox injections next week but I don't feel he's up to being transported to the hospital and I'm trying to negotiate a home visit. It has taken the hospital 2 months to arrange the Botox and in the meantime Drew's condition has deteriorated partly due to an adverse reaction to Baclofen. I would ask your Dr to refer you to the Rehabilitation Unit at your hospital who should be the people to give you the appropriate equipment. Good luck.

Margaret

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Hi Margaret

I'm sorry Drew has had a rapid deterioration. It's miserable isn't it?

Gosh, twelve months is a lifetime with this illness. When Liz had botox for her jaw it was a simple procedure done in her wheelchair and took about five minutes. So hopefully you will get a home treatment.

Liz is at an earlier stage in that she does not find it uncomfortable if her head is lifted for her.

I telephoned thee local neuro team she is on a waiting list to be seen in a month to six weeks.

I think we might try a head cushion in the meanwhile. Something a little more supportive might be better. I'll ask about head supports though, thanks.

Best of luck to you and Drew too.

:)

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Hi Keven, Barry did not have this problem. Have you tried a neck brace.

Althea

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I Althea, that is the sort of thing we need, but because she is in a nursing home something 'medical' like that will have to be prescribed. Rules y'know ugh.

I'll raise that one with the OT thanks.

Best

Kevin

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Although my husband can hold his head up if/when he chooses, we are going to try a device called a headmaster collar. It was designed for those with "head drop," in his case a right side ataxia with his PSP. I am doing this for the "muscle memory," to avoid the neck from freezing in the wrong position. It allows the head to move left to right and just supports the chin.

symmetric-designs.com/headm...

We tried a soft neck brace but it was of no use. Other cerivcal collars seemed to restricting.

Good luck! Christine

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Christine Brilliant!

I bought a cheap version as it is a stand in until the OT comes out.

amazon.co.uk/gp/product/B00...

Thank you!

Kevin

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Hi Christine

I bought a cheaper one in plastic and it was awful!

Far too small an area on the clavicle and plastic, sweaty foam.

Do I have delved deep and bought the one you recommended.

Thanks

Kevin

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Hi Kevin-1!

In my case I also observe that trend but it does not seem worrying.

Within the protocol of gymnastics and during six days a week she does neck exercises: up, down, right turn, left turn, fold to the right, fold to the left, shrug the shoulders .... 6 times each movement.

Doing the exercises without help is twice as effective as if you are helping something and almost no value if all the effort is done by the physiotherapist.

Maybe this helps.

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Hi Luis

Yes, exercise is very good as you say. Sadly Liz has moved beyond that and the physio. (Health Trained) is working to keep movement only.

Best you you

Kevin

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does Liz's chair recline? sometimes if u tilt it back slightly, there's less gravity for the person to have to hold their head up against .

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Hi Catherine

Yes, she does. It works well for her. You know we should make more use of it.

The problem is that she spends significant amounts of time in her wheelchair and eating and drinking exacerbate the problem.

Thanks for coming back.

Best

Kevin

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Kevin, have I have seen headbands that are worn across the forehead and attach to an anchor in the back. I don't know where in St. Albans you might find one, but it appears comfortable.

Give Liz my love and a big hug. Take care of yourself. Your crazy Cajun brother, Steve

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Hi Steve

Thanks - I seem to have found something as a stand-by (Amazon) which hopefully will work until the OT get's to assess.

I will pass the hug and love on.

Meanwhile warm wishes to you both :)

Kevin

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P.S. an occupational therapist might custom make something. I am currently wearing a custom made splint on my broken little finger on my right hand. Be strong brother.

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Ah, the melti plastic stuff.

Cleaver isn't it.

Ah, you be strong too.

Warmly + hugs

Kevin

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My dad started to allow his head to droop and I was afraid that he would get stuck like that, which would make eating/swallowing extremely difficult. I asked the Neuro Matron to intervene and for her to request the OT to measure him for an appropriate chair to keep him comfortable. He was by this time in a nursing home in the U.K. unfortunately dad died before anything could be organised. However, I think I am correct in saying that if the patient is in a nursing home it becomes the home’s responsibility to source an appropriate chair or bed or whatever is needed to care for the patient as time goes on and the illness progresses. Dad had CHC so I don’t know if this was a factor or not. I did see another patient in a very advanced chair with all sorts of tilting mechanisms and head rests etc to keep his head and torso in a comfortable position and I heard the nurses talking saying it had cost the home over £4000 so it could be worth speaking to the Home or Neuro Matron/OT. Good luck I hope you manage to sort something ASAP. Ruth x

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Thanks Ruth

That's really good info. We hope to have an OT assessment in 4-6 weeks.

Meanwhile I have bought a cheap cervical collar.

amazon.co.uk/gp/product/B00...

It might keep Liz going until the OT arrives.

Yes, CHC may have helped I think, or it was done through the Soc. Serv. loan scheme.

Thanks and best to you

Kevin

x

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Good luck to you and Liz. Thinking of you. Ruth x

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Thanks and the same to you... I keep telling myself, "keep up with the changes and look after myself too."

:)

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That’s the spirit! I know it has often been said that this is a group no one would wish to be a member of but it’s the best group to be a member of if fate has left you no choice in the matter. You helped me immensely with your advice regarding CHC etc. when I first became a member and I greatly appreciated your help and everyone else’s who passed on their hard learned knowledge. Keep going, Liz needs you now, more than ever. Ruth x

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Hi Ruth

It makes my day to know I've been of help.

Yes, this is a seriously good forum. So many voices each bringing something to the table. I would have been fairly lost without it.

Warmly

Kevin

x

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this is a copy of a post I gave to Ruth in response to her idea that things like appropriate wheel chairs (and other items) be easily attained :

I think that if we PSP caregivers, hospitals and websites, could research anything, it would be the expected needs of the PSP patients. There should be an immediate inventory; a list of items that would be and has been used with success for these patients. You don't give a person with a broken leg an arm sling nor do you make him wait till his bone is healed to finally provide him with a leg cast....If we had a list of stuff our loved ones were going to need we would at least know that there is such an item out there and order said item when needed.....

Andrea

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That would be nice if the Dr. neuros had such a list - even if you have never heard of PSP - surely in your training you have come across neurodegenerative issues for pete's sake!!!!!!!!! If your not in a research lab or a brain surgeon - your on the front lines - catch up with us:(

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I totally agree with you Ruth

I think that if we PSP caregivers hospitals and websites, could research anything, it would be the expected needs of the PSP patients. There should be an immediate inventory; a list of items that has been and would be used with success for these patients. You don't give a person with a broken leg an arm sling nor do you make him wait till his bone is healed to finally provide him with a leg cast....If we had a list of stuff our loved ones were going to need, we would at least know that there is such an item out there and order said item when needed.....

AVB

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I also think Andrea that it is down to the old postcode lottery of your local health authority and also the personality of your Neuro Matron. In the U.K. it is they who co-ordinate the multi disciplinary team that is required to care for PSP patients properly. A bit off topic but I found that they were the most important one for my dad, they should guide you through the end of life wishes, it is not pleasant to face and professional and timely assistance would have saved my dad about three months of suffering in the end as he did not wish for any interventions but as it wasn’t on paper and witnessed, the hospital was bound by the legal system to do all in its power to keep him going, only to suffer more. Needless to say that when he begged us to make them stop we made sure his wishes were signed sealed and delivered but we so wish it had been done sooner but no one expects such a dramatic downturn and of course no one wants to face their own mortality, indeed dad said he didn’t even realise he was ill until he ended up in hospital! The other major advice should be to get an LPA and Will in order ASAP as PSP is such an unpredictable enemy. I’m sorry that’s a long one and not on topic but I found in the end for dad it would have helped him as much as equipment. Wishing you all the best. Ruth x

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when it comes to psp everything is on topic... :(

Thank you for your input

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What (another!) valuable thread this is! Thank you everyone for your contributions. Thank you for asking the question. We are all taking notes, guys ...:-)

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Yes, isn't it

Folk here are great.

Just for info I got this until the OT can assess in six weeks time

amazon.co.uk/gp/product/B00...

:)

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Good to see there are some different options: having some technology to help us also helps us feel not so alone with the problem...

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Ben has a horseshoe shaped cushion on his recliner chair, arranged by the OT it supports his neck comfortably. Only problem is He does tend to get a bit hot and has to have his head released to cool down. He always asks, in his own way, for the neck cushion, as it obviously gives him great support and comfort. Xxx

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Thanks Katie

I was wondering about the heat.

As a temp. fix I have gone for this

amazon.co.uk/gp/product/B00...

Hopefully the OT will visit in six weeks and sort us out properly.

xx

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Hi Kevin,

P had that problem and he is now in a tilt and space chair which is tilted back so that helps - but we have to sit him up every time he coughs/chokes. I tried a travel pillow but round the front, under the chin with variable success.

xx

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Thanks

That was really useful info. I nearly got one of those.

As a stand in, until the OT can get to Liz, I went for this

amazon.co.uk/gp/product/B00...

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Looks like that would do the job but P was sensitive to anything round his neck so I thought a soft, velvety cushion/travel pillow was the best option for him. I also tried a vibrating heated horseshoe shaped collar but he was none too keen on that.

He objected strongly to a neck brace when it was fitted by paramedics after one of his falls and when it was removed several hours later he had severe bruising around his neck, so I understood why he wouldn`t tolerate that again.

Trial and error I think !

xx

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Yes, I will send it back if it does not work.

I think if it like one of those whiplash devises it will be far too restricting and uncomfortable.

I will post back when we try it - Hopefully on Wednesday.

xx

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Hi NanB

I think this is where we are headed.

Does he have a problem with his head rolling to one side?

xx

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Not too bad at the moment, only when he is tired I think. The chair has a soft head rest which can be adjusted for support.

xx

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You are a great carer... :)

xx

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We have this problem with my mom so she is usually in the reclined position which prevents this from happening

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I think we are heading there too.

I am looking for something for when she is in the wheelchair.

Best to you

and thanks

Kevin

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We are in Canada (have to pay for chairs out of pocket). It takes a while to get a tilt wheelchair so I would advise to start the process sooner than later, unless you have better service. We have a stationary recliner but she has to be moved with a lift and staffing is limited so with getting a tilt wheelchair we hope to keep her more comfortable, and not confined to her room.

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Hi

We're in the UK, so though they are free to loan it is best to order for the next generation in advance. ;)

Well, six - eight week lead time.

Thanks - that is a very good point about keeping her from being bed bound too early.

I've made a note.

Wishing you both the best of it all.

Kevin

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This is usually a severe problem during the last year of life. I kept my wife in her lift chair in a reclining state throughout the day. I thought about using a neck brace and asked her neuroligist (movement disorder specialist) but she was against it. I still think it couldn’t hurt. Some of my PSP patients in my support group are going to try it. When I hear how it goes, I’ll let you know.

Ketchupman

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Thanks Ketchupman

I wen't for this as a temp measure

amazon.co.uk/gp/product/B00...

Looking forward t their findings.

Best

Kevin

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Sorry Kevin, not a problem that Steve ever had. Agree with your call to the Nuero OT. They should be able to help with a specialised wheel chair.

Lots of love

Anne

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Waiving at you

Hugs and love

Kevin

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For Bruce I would recline the chair slightly so that gravity pulled his head backward instead of allowing his head to drop forward. Once there I would (try) to use a travel pillow to support his head from side to side...

Love you guys

AVB Andrea

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Exactly what I do Abirke, the tilt recliner is the greatest thing I have purchased to date, they are around $4000 but I got it on Gumtree for $800 had only been used for 4 months, brilliant

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Hi Kevin this was a real problem for our mum. There were days when we didn’t see her face. We did try a neck brace that the Physio had made for her but she dragged it off every time. My mum wouldn’t sit in a recliner either so we never really resolved the issue. Mum always looked so uncomfortable but wouldn’t allow us to prop her up with cushions. It was all very difficult. Hope you have better luck than we did X

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Hi Doreen

Liz was never an obstinate person. As In fact she was the opposite. With PSP she has become really quite intractable on many things.

It can be very difficult can't it.

xx

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My mam was the most obliging of people. Very gentle and calm. PSP changed her to be stubborn awkward and sometimes quite nasty. None of us knew how to handle her. Best of luck Kevin and good wishes to Liz xx

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Its sad to see.

Warmly

Kevin

xx

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Totally know where you are coming from, my hubby is so so controlling, at times nasty, irrational, jealous to the extreme, (even jealous of the time the dog gets from me) I am exhausted and have registered to get him into care, but the list/wait is so so long.

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I had a wheelchairbound handicapped child and used a cotton towel rolled from each end then turned it face down - It absorbed moisture and allowed air to move through material(cotton) . It was washable and comfortable and adjustable!!!!! Yes, The great Oz Life - thought I was so good at caregiving~ gave me another shot at it!!!!!!!☺️(My son was in a group home for the last many of his 29 years.)

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It's not just in Oz that life bowls googlies, but twice is too much. :(

I like the towel idea a lot.

Cheers

Kevin

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The towel worked for me too, just use different sizes for the different positions, behind shoulders, neck etc.

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I said I was going to buy a cheaper one than the one Christine recommended.

I turned out to have poor sweaty foam lining an

I bought a cheaper one in plastic and it was awful!

Far too small an area on the clavicle and plastic, sweaty foam. The part that rested on the clavical put too much pressure into one place.

Its a shame because it was a great concept.

This is where I bought Christine's recommended collar.

completecareshop.co.uk/orth...

Some of the ones on Amazon a one and two hybdred more!

They come in different sizes.

Thanks Christine!

Cheers

Kevin

Kevin

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My Hubby has same problem. I use a neck cushion and force it between his shoulder and side of face to keep it from adjoining his shoulder, shaving is a major problem too. I put a linen cloth on the cushion for the drool.

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Sorry Kevin, not me either

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Hi Kevin I do hope Liz is doing as well as can be expected. I haven’t been a the site for a good while. Take care x

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Hi Tillyhugs!

Good to see you back.

Liz is in a nursing home now and she does not like not being at home. Sadly her care needs could not be met event with a care agency coming in. So she's a little grumpy with me!

She has deteriorated quite a bit since being in the home despite the care being fairly good. I visit her quite a lot as it is only a 15 minute walk away.

How are you doing?

How is DC?

Best to you both

Warmly

Kevin

xx

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Hi Kevin. Hubby had the same problem, very distressing. Sorry we did not find a remedy for it. However, when he was in hospital for a week with a chest infection he received oxygen on the first day which lifted his head up! Unfortunately the effect only lasted for about 5 days. We were advised that more oxygen wouldn't have the same result. I don't know whether that info was correct as he sadly died two weeks later. Maybe something you could inquire about. Good luck and take care. Maddy x

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Hi MaddyS

How unexpected. Yes, I will ask about that.

Thanks

Sorry for his passing.

Kevin

x

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He died peacefully in his sleep. No pain. I am thankful for small mercies. Good luck with oxygen , hopefully it will work. Xx

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Thank you.

xx

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Dad's head has been in the down position for months, his chin rests on the chest. The neck, shoulder and upper back muscles are so rigid it actually causes more pain trying to move his head up.

Even in a reclined position his head drops down. We've tried a few options to hold his head up but nothing has worked.

While sleeping the bed is inclined with 2 pillows and a towel rolled up at the base of neck to offer some support. I have gently tried to push his head back onto the pillows and it's like pushing on a board.

Ron

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Hi Ron

Yes, we are trying to stop Liz going down that route. Physio and a head support.

Have you had a physiotherapist assessment?

The G.P should be able to arrange one for you.

They can be very good at this sort of thing.

Just a thought.

Best to you

Kevin

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