just another day

[fourtimer]

I decided that it's time to update my status. I am and always have been PPSS.

I started progressing rapidly and 1988 when I was 38 years old, this was because my 18-year-old son died unexpectedly and an accident. So from approximately the 1990s, I only have use of my head and neck.

This is not been too bad to deal with as I have a great wheelchair that I drive by using my head. I put myself into a hospital for disabled people and it is great here! I have my own large room, television and laptop connected to will full-screen so that I can watch movies on DVDs etc.

The past few months I have been progressing again, new symptoms had laid dormant for so long I thought I was set for life. But, we all know better never let your guard down. But it was fun living in a fool's paradise.

Now I am meeting with a very nice speech therapist who will work with me on my "Dysarthria (speech) and Dysphagia (swallowing).

Well I have to stop for now, I'll write more on Sunday. Hope you're all feeling good! Go Warriors!.

[Seasha]

HI fourtimer! Glad you peeked in today and gave us an update. I certainly am impressed by your upbeat attitude. You are a beacon of light reminding us that although you are w/c bound and living in a place with other disabled folks, you find things to be grateful for.

I curious about the wheelchair that you can move with your head. It's great that we live in an age of modern technology! My great-granduncle was in a wooden w/c with a blanket for a cushion back in the early 1900's. I can't even imagine how uncomfortable that was!

I hope your speech therapy goes well and you continue to stay in touch with us.
Take care!

[fourtimer]

Thank you Sasha, for reading my update and also for your compliment!

I believe my wheelchair's brand name is INVACARE, but since I'm sitting in it right now I cannot

see the name. Since I cannot use my hands, it is built with something called a head array, I will

describe how I drive as best I can. To go straight I push my head back and when I wish to turn

left, I turn my head to the left. To turn right, I turn my head to the right.

To change gears I move my head forward once means reverse, etc.,etc.

I don't know if you can tell but I am exhausted right now and I'm sure there's someone out there

The drives a similar chair and can be much better at describing it. I should have waited until

I have more strength to describe it. I did like your description, Sasha, of your great grand uncle's chair, I bet that the time he was happy to have it because that was the only technology out there at the time!

[Seasha]

Fourtimer - you gave a good description of how it works! I understand completely.

I did like your description, Sasha, of your great grand uncle's chair, I bet that the time he was happy to have it because that was the only technology out there at the time!

And can you imagine that at the time and where he lived, some of the roads were dirt and gravel! It must have been a bumpy ride.

[fourtimer]

now when you mentioned your great grand uncle, it took me back... When I first got multiple sclerosis

And was using a manual chair with my mom pushing me, we had several funny encounters. I'll relay one now:

At the time, I was in my 30s and my mother was in her 60s and I hate to

Admit it but I was a smoker. So as she's pushing me along, somehow a huge role of string

hadwrapped itself around one of the wheels. So I, with my mother's help, lifted up and sat on one
of those large

Planter boxes and started smoking a cigarette. My mom turned the wheelchair on its side and

sat on the ground and began unwinding the string.


We thought nothing of it then but realized later how many people had stopped and asked to help

My mom and she declined while they threw me a nasty look. You see, they thought she was the

Poor sick older woman and I was very young punk caregiver making her fix her own chair while I

Smoked.

[Seasha]

Thanks for the laugh! I needed one today I feel pretty weird when my 91 yr old mom pushes my w/c when we visit her and go mall shopping together.

I hope you are no longer smoking?

[suzq]

Hi Fourtimer,

I really enjoyed your story about your mother fixing the wheelchair. LOL. I was also very interested in hearing about your wheelchair since I have had much progression in my MS and will probably need one soon.

I was diagnosed in 1992 with remitting relapsing and then the diagnosis changed in 1993 to secondary progressive. Everything stayed stable until 2003. I was in a wheelchair, but still had very good upper body strength and did almost everything that I had done before I needed the wheelchair. Unfortunately I ended up in the hospital for three months due to other medical issues and it progressed severely during that time.

Though I still had the use of both hands, my body strength was gone and my hands were shaky and then three years ago I lost the use of my right arm and hand. I changed to a left-hand wheelchair control (which is dangerous for anyone around me because I'm so right-handed) but I am now rapidly losing my left hand.

Your description of how your wheelchair works was perfect, thank you! At least I have some idea on which way to go.

Thanks again, Suzq

[fourtimer]

Seasha: Glad you enjoyed it. I will that you have similar stories with your mom, my mom is 96 years old.

She is the one who has to come and visit me and we have so much fun playing games on the computer. Word games, that is the only time I played that game is when she comes. She had to limit her visits because it is a long walk from the front door to my room. She is a stubborn old Irish lady and refuses to use anything but a simple cane.

To answer your other question, NO I no longer smoke! I quit it cold turkey over 20 years ago.

Susq: Let me know if you need more information on the chair, I'd be happy to help. I also sent just that you do it sooner than later. They are custom made and they will have to measure you to get it just right. You will love it!