Living Well With MS & Disabilities: Ellie's Blog

On my last blog which was under MS I talked about being in an MS relapse and what I was experiencing physically as well as emotionally. Well I'm now out of it. And it was short relapse!  Which pleases me no end (my new medicine is working).

I blog under two categories MS and then Disability.  I hope that many of you go to both of them which you can do by just using Ellie. I have MS separately because I have MS and I think it's my personal experience and concerns that I want to share and talk about. I also blog about Disability. I do this because I have a personal concern for all people with disabilities which comes in part as I am a physical therapist who worked with people with disabilities for many years.  And now with MS I am also a person who has disabilities as do other people who have MS.

If you didn't read my last blog which was under MS take a look  I talked about what was happening when I had a relapse. I started with my cognitive loss and fatigue then moved on to the physical loss that I experienced over a period of 2 weeks. During this time issues of ways to compensate for cognitive loss,fatigue and physical loss became important to me. I have become a pro at compensating for fatigue. You rest more!  And I also take a Provigil and drink too much caffeine.  And this is when I usually start meditating again.

The physical part is relatively easy also as I have all of the assistive devices at my disposal. Wheelchair,walker, cane etc..  And I have learned over the years to use them when I need them. No heroics here!  I've tried that!!

So when I see people limping or lurching or even not going out because they can't walk that far it makes me just want to scream!  Being a physical therapist I know that using your body improperly when walking can lead to secondary problems. And letting yourself lose out on life by being stuck in your home because you won't or can't afford the right assistive device is wrong. To be honest I also have had times that I did not want to admit that I needed an assistive device so I do understand the emotional aspect.

But it is really so detrimental to your physical body and your life itself. Why is it that nobody talks about respecting your body and what it's needs are for the physical task you going to perform?

When I was working as a physical therapist whenever the Olympics were on I would be reminded of this.  And tell my patients how even though they weren't athletes their exercise and walking program and what they were doing was an equivalent.  And when you see these Olympics Stars using the best equipment possible so they can use their body to the greatest advantage performing the skilled event you have to question why can't it be the same for a person who has a disability! Why wouldn't it be just expected that they would have and be using the right assistant device so they too can use their body in the best way possible , even if it's just walking across the room !

Do we have our priorities upside down here?  Would we tell these Olympians who choose to use more advanced equipment that would help their bodies perform at a higher level that their giving up or cheating.  No way! And closer to home when I played tennis I chose the best racquet for myself as did most other people I knew.

But do we give the disabled who choose to use an assistive device so they're not lurching or limping or exhausting themselves and preventing future secondary problems the same respect for their judgment?  Or do we think that they must be giving up or cheating by not trying harder? It's odd that we even think they must be getting old if their past a certain age. You don't use an assistive device like a cane because your old. Even if a person is 90 they would use a cane or other assistive device for a physical reason. 

So I propose that we all make an effort to salute and support these people who are respecting their bodies and trying to live their life to the fullest!  And the hell with what other people think. Let's help them get over the fact that it's a negative. Because it is not! It's a positive act!!!

If you have a condition that effects your walking ability that's life. And your life will be much easier when you admit to yourself that that's the way it is. Then you can move on and do what you can to assist yourself to living your life to the fullest. You go get the best assistive device possible to compensate for what your body is no longer capable of doing.  And in the process you will be preventing secondary problems that could be occurring by using your body improperly. You will be respecting your body!  

We didn't do that with polio patients and they now have secondary effects that if we had a different policy things might be different for them now.  But it doesn't have to happen again.  We have the knowledge and also better equipment if we can afford it and the outside world is more available to us thanks to the ADA.

So let's get out there people proudly and feisty with our  walkers, canes,crutches and wheelchairs as appropriate and live!

See you out there!   Ellie