Health Set Back...

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Health Set Back...

Postby flagman1776 » 29 Dec 2018, 23:41

I don't know where to start. My MS is Secondary Progressive phase but I've been pretty stable for years... since 2002. In recent weeks & months even... I've been loosing strength, increased spastisity... migraine type headaches. Struggling to lift my good foot which is necessary for my scooter use. I'm heavily invested in these scooters. Struggling to get into my car. Struggling to walk with the walker. I should not be having an excaserbation 16 years into SP.
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Re: Health Set Back...

Postby martin007 » 29 Dec 2018, 23:54

Hi.

What disease do you have?

I have SMA

https://en.wikipedia.org/wiki/Spinal_muscular_atrophy
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Re: Health Set Back...

Postby flagman1776 » 30 Dec 2018, 00:51

MS = Multiple Sclerosis
SP = Secondary Progressive type (means it converted from Relapsing Remitting type after about 15 years).
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Re: Health Set Back...

Postby martin007 » 30 Dec 2018, 01:04

I understand.
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Re: Health Set Back...

Postby flagman1776 » 30 Dec 2018, 01:40

My carefully crafted way of life is threatened. :(
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Re: Health Set Back...

Postby Burgerman » 30 Dec 2018, 04:21

It is.

I always tell people that they should look to the worst case, the future. Plan and work towards that. Scooters may not be a part of that. Powerchairs will, and even if that means that a carer will eventually need to control it from the rear.

Also vans like mine. Some place to land that van. Wide doorways, open plan and large kitchens and bedrooms, wet rooms, may all need to be looked at. Even if it means moving. And local council modification help. Best bet is to start by making a plan, talking to your local OTs etc. They will help, organize grants etc as needed. If things dont change they will stay the same. :problem:

Anyway, dont be down. Nobody gets out alive. :ak47
Well there was one guy, if you believe in fairies or pixies...
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Re: Health Set Back...

Postby flagman1776 » 30 Dec 2018, 19:54

We don't have that kind of support in the US. :( The ramp we just finished was self funded. I totally agree, any substantial improvements should be 'worst case' compatible. The biggest part is that this is taking me back mentally to a very bad time in my life.
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Re: Health Set Back...

Postby Burgerman » 30 Dec 2018, 20:23

Well I think that having a plan is maybe some help to getting over that mental shock thing. Having some belief in the future and how it will work should help reassure?

As for no help, I cant even imagine how that works. Here if we become disabled, or more disabled, then we are usually referred by a doc to the OT or Physio, etc. They then assess your needs. That may be physical, mental, or equipment needs. So they would in a case like yours draw up a plan that includes any adaptations needed, electric beds/lift chairs, walls or doors moving, adapted kitchens, some hard-standing to land a van with a ramp, a wet room, care hours so you can employ carers as required. This is known as your care plan. And is subject to change and correction as your condition changes. Much of it like patient lifts, electric beds, powerchairs, pressure relieving mattresses, cushions, lift chairs, or disability related adaptations is or much of it is available free. But its slow, and wasteful in the way they go about things. And if you have lots of cash in the bank, they may want you to contribute towards house adaptations like kitchens. Although often not much.

There must be something equivalent or similar sorts of help in the US for the disabled or injured that cannot work or those that would find it hard, or the disabled wouldn't be able to cope. In new York for eg, expresso has his girls looking after him, carers. I suspect you didn't look into things yet. Even if that means moving to a city as mentioned previously?
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Re: Health Set Back...

Postby LROBBINS » 30 Dec 2018, 21:06

There must be something equivalent or similar sorts of help in the US for the disabled or injured that cannot work or those that would find it hard, or the disabled wouldn't be able to cope.

What makes you think that? If you don't have exceptionately good private insurance, the solution in most U.S. states is "incarceration" in a nursing home. There's profit in that, not in providing services to let people live on their own. (There are exceptions, e.g. Berkeley, CA has a long history of various forms of supported living, but these are exceptions.) Italy, most places, is only marginally better than the U.S. with nowhere near the level of support offered in Great Britain.
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Re: Health Set Back...

Postby Burgerman » 30 Dec 2018, 21:28

Why do I think that?
Because I see people like expresso in new york, lithium building, 3 chairs, with carers? And similar users with vans at min 50k and extra chairs, etc. But have no idea exactly how it works in the US as it seems extremely complex.

I also know that there are many places in the EU with much worse care. Italy's issues are very complex. You have had 61 now (is it?) governments and endless turmoil, of messy shared party rule since ww2 and all with different plans. A ship with about 120 captains. And its looking just as messy today with nobody actually in the driving seat with any real power. Right now you have a populist socialist that wants to borrow a load of cash to spend his way out of debt/trouble and give more borrowed money to the people. But that will not work long term. And the poorer the country becomes long term the less there is to help those in need and then you are headed the same way. Down.

I know that all those elites, that love socialism never want to face its total failures. They are willfully ignorant of that. Dont believe me?
Heres a typical biased BBC (THEY Love socialism!) article. It was on this mornings TV news carefully tip-toing around the cause... And heres its matching web page. A full page showing the massive economic collapse problems of Venezuela caused by chavez's socialist reforms, carefully continued by the bus driver Maduro of the United Socialist Party of Venezuela once he died. Every time that the BBC mention that its cheaper to wipe your backside with actual cash than try and buy some bog roll, (you cant easily buy ANYTHING now), they totally avoid any mention of the socialism that caused this. They cant. Their stupid lefty/liberal biased elitist idealism cannot be wrong. That word SOCIALISM is conspicuous by its total absence (avoidance) in a long 20 minute news slot, as per usual, even though that is the direct cause of all the suffering and desperation/poverty and eaten pets and zoo animals! And a full BBC page very carefully AVOIDING this word is here https://www.bbc.com/news/world-latin-america-46524248

And this is what trump really means when he says fake news. Its really just liberal, leftist, elite media and political bias. The BBC is nothing but a left wing propaganda outlet.

What makes you think that? If you don't have exceptionately good private insurance, the solution in most U.S. states is "incarceration" in a nursing home.


The only difference between the UK and the US is that we are FORCED to pay into the hopeless inefficient NHS. We pay £5 a gallon for fuel for eg, hurting business, and individuals. And we pay a fixed tax on wages for "national insurance". And 1001 other high taxes because of it. In the US you have a choice. You pay for good health care cover. Or you CHOOSE not to do so and can then have more $. And so dont have adequate cover when you need it. If that was your choice then it was self induced. You cant complain later on. If you were disabled from birth, cannot pay, then this makes the situation a little different and you need and should get state assistance. One thing that should change in the US though is that previous and existing medical history should not be allowed to influence the cost of cover. That IS wrong.
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Re: Health Set Back...

Postby martin007 » 30 Dec 2018, 22:28

As for no help, I cant even imagine how that works. Here if we become disabled, or more disabled, then we are usually referred by a doc to the OT or Physio, etc. They then assess your needs. That may be physical, mental, or equipment needs. So they would in a case like yours draw up a plan that includes any adaptations needed, electric beds/lift chairs, walls or doors moving, adapted kitchens, some hard-standing to land a van with a ramp, a wet room, care hours so you can employ carers as required. This is known as your care plan. And is subject to change and correction as your condition changes. Much of it like patient lifts, electric beds, powerchairs, pressure relieving mattresses, cushions, lift chairs, or disability related adaptations is or much of it is available free. But its slow, and wasteful in the way they go about things. And if you have lots of cash in the bank, they may want you to contribute towards house adaptations like kitchens. Although often not much.


From what you say UK is a paradise...
In the rest of the world everything is very difficult...
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Re: Health Set Back...

Postby Burgerman » 31 Dec 2018, 00:09

No its not. But it does help the disabled quite well. Although some would disagree. It depends on actual disability and assessment of needs. A little postcode luck, And a great deal depends on the user making wise life choices.
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Re: Health Set Back...

Postby martin007 » 31 Dec 2018, 00:13

We all have to live in the United Kingdom...
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Re: Health Set Back...

Postby Burgerman » 31 Dec 2018, 00:22

Why do you think we have boatloads arriving illegally, sailing across the english channel from france, hanging under and inside trucks, etc etc. Why not stay in france? You got it. They want the free hand outs.

YOU however have till 19th may to come here legally!
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Re: Health Set Back...

Postby martin007 » 31 Dec 2018, 00:24

I understand.
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Re: Health Set Back...

Postby Burgerman » 31 Dec 2018, 06:12

Theres a LOT of clinical trials going on. https://www.mssociety.org.uk/
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Re: Health Set Back...

Postby foghornleghorn » 31 Dec 2018, 13:39

Can't offer any solutions but a comment on environment vs things like the headaches.

You've just had a huge load of woodwork done on your house which would completely fuck me up. Side effects for me would be headaches guaranteed, losing strength quite a possibility. Things may be better after the wood isn't so new.
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Re: Health Set Back...

Postby Burgerman » 31 Dec 2018, 14:14

Thats weird. I love the smell of freshly cut treewood!
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Re: Health Set Back...

Postby Scooterman » 31 Dec 2018, 17:36

Burgerman wrote:I always tell people that they should look to the worst case, the future. Plan and work towards that. Scooters may not be a part of that.

That's one of the reasons I got my powerchair and adapted it to suit me while I still can. And it can access public transport which my scooters can't. (Although smaller scooters like Flagman's can)
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Re: Health Set Back...

Postby flagman1776 » 31 Dec 2018, 17:56

It is PT lumber but it's all outside. My headaches are unusual in that they seem to be related to spastisity. I've had them before... why my Primary Care Dr sent me to the Neurologist in 2000. I generally control them with a balance of Zanaflex & pain relievers...
Yes, the fold up Travel Scoot can fit a lot of places. My trouble IS that I'm struggling to get my good foot up high enough to get on. If I can't get on & off, I can't use it.
Yes, there's a lot of research going on... there has been since I can remember. I run an MS group and follow all the developments. I would need a real break through to reverse the demylination in order to help me at this point. It's much easier to slow the progression than it is to reverse the nerve damage that's already occurred.
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Re: Health Set Back...

Postby Scooterman » 31 Dec 2018, 18:11

I'm sorry you're suffering Flagman. Perhaps the winter isn't helping, i'm always worse in the winter.

To lift my feet up onto the scooter or wheelchair footplate I just grab my ankle and lift my leg onto the footplate/scooter, but my legs are so thin it's easy. But I did make this out of a dog lead I found when out and about. You slip your foot in one loop and lift :thumbup:
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Re: Health Set Back...

Postby flagman1776 » 31 Dec 2018, 20:20

I use my cane, reversed hook under foot, to lift... both hands on the cane foot. I put a screw through the side of the cane's rubber foot into the metal, so I wouldn't pull it off again. I use the cane lift mostly on the left which I can't lift at all. In / out of the car. Either to lift feet up to scoot's foot pegs.
To mount Scoot, I lock my bad left leg (hold on with both hands to keep from falling & need to lift my good leg enough to clear the cross bars. I removed the spiffy fabric carrier between the cross bars so I can put my foot down in between them when I get in trouble.
Getting back off, I stand up... pretty much use the car to keep me up while I extract my good foot.

We built the ramp because I couldn't lift my good foot enough to climb stairs... one step at a time, only on the good foot/leg. I've been using at least 50% right side upper body strength to climb stairs... for the last several years.

I've lost much more strength since my heart attack Nov of 2017.
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Re: Health Set Back...

Postby Burgerman » 31 Dec 2018, 21:22

The ramp is just as useful as ever as you will need that for a chair too.

And remember that I have a carer to dress me, and to get me into a chair in a morning via a board or a patient lift. And thats where I stay for the day **.

I love fast chairs, that are controllable. My weight means that to obtain that controllability a 6mph chair, 20A controller, good programming, is the limit. Higher speed motors, are not acceptable as they lack the accuracy I want in control. But a chair is a compromise. Since I cannot get out of it all day in MUST let me do all. Indoors in cramped conditions, or in my workshop without getting hung up. And outside. Not sink on soft stuff. Get up that stupid pub ramp. Work on my wet soft grass airfield. Have daft amounts of stamina/range and torque and reliability as I am busy when not stuck on my bed.

- I want lots of range. (lithium fixed that with ease! Lead was hopeless.)
- Every inch counts. Not in my own house, where rooms are big, and doors wide, etc but the rest of the world which didnt expect wheelchairs, pubs, toilets, and other people houses are not all adequately adapted. And then theres vans which are essential if you still want a life. So seat height, length, width all matter.
- My super compact BM2/3 chairs did all that, but - then pressure sore problems for 3 years buggered that up. So new Salsa with tilt, legs, recline became essential as pressure relief during the day as my own chairs are too compact to have a high heavy seat as it compromises stability and rigidity.
- So now I have 2 types of chairs to choose from, depending on my backside at the time.

You may end up with someone putting you into a chair for the day. As I do. So these things become way more important. Since you cant get out and must be able to have a life. And that chair, and house must be able to do all that. So plan! Get assessed for a chair based on new needs. Etc. Get a hoist, battery power. Get a vehicle you can get a chair in with you either transported in the chair, or driving from it. Because it appears that you will need it. And a carer.

** Other than 1 hour during the day on my bed, to prevent sores around 5 pm.
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Re: Health Set Back...

Postby Scooterman » 01 Jan 2019, 10:08

We need to move to a low gravity planet, that would make life much easier :)
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Re: Health Set Back...

Postby Burgerman » 01 Jan 2019, 10:55

I thought about that. Mars is low grav. But its cold, dusty, no pubs. So :thumbdown:

Also no air which makes it a bit difficult to breath :shock: , and all your insides will try and get out through every orifice. But that lack of air also stops you feeling the cold. Makes it easy to stay warm. Esp in a suit or building. A bit like a vacuum flask. Atmosphere is just 1% of earth, all carbon dioxide.
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Re: Health Set Back...

Postby flagman1776 » 06 Jan 2019, 22:22

I seem to be able to lift my right leg just a tiny bit better today. :) I'll take any improvement.
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Re: Health Set Back...

Postby Burgerman » 07 Jan 2019, 00:22

:clap cheers
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Re: Health Set Back...

Postby Scooterman » 11 Jan 2019, 19:44

I second that Flagman

Onwards and upwards :thumbup:
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Re: Health Set Back...

Postby flagman1776 » 16 Jan 2019, 00:30

I passed a kidney stone about a week ago... quite a bit of blood over 24 hours... at least it didn't get stuck like my first one about 1989. OK since. I'm actually feeling a bit better. It's subtle but I'm getting out better. I wonder if this could be what was triggering my loss of strength?
I'll take it. Whatever.
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Re: Health Set Back...

Postby martin007 » 16 Jan 2019, 00:33

I'm happy for you!

I (a few weeks ago) had gastroenteritis and chickenpox.
I lost strength, but now I´m recovering.
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