How mobile are you?

Hi just wondering how mobile everyone is with this and how they cope getting about. What activities do you do? Looking for suggestions as my mums a little lost and feels isolated at the moment. Thanks in advance.

[wilburlois15]

Hi Yojo,

I am 40. Walking is difficult for me but I try to do as much as I can. I walk my kids to and from school most days. It's tough and aerobic and in the summer it's a very sweaty activity but the exercise does wonders for my mental condition and my mobility improves as I warm up. I don't use a stick for this but I do when I am off-pavements (fields, paths, etc) because uneven ground is more difficult. My main problems are in places like restaurants or theatres after I have been sat down for a long time. Getting up to go to the toilet/exit is a bit of a step into the unknown. I have yet to work out a good strategy here.

Angus

[jolocny Volunteer]

Hi, Yojo!

I've progressed, quite rapidly (I think), for a female carrier. I was diagnosed in 2015. I began using a cane, partly because I'd had a hip replacement and was recovering. As I became less steady I moved onto Canadian (forearm) crutches. I used them for years and still do on occasion. 5 years ago we moved into a new handicap accessible home and, wanting to do my part of the settling, I wrenched my foot 2x, breaking it the second time. I was told to be in a wheelchair until the doctor released me from it after surgery. Well... I got weak enough that I'm still in it. I do occasionally walk.

Since being in the WC, I've actually become more mobile! I'm actually able to propel myself very easily in a manual WC and have a motorized chair for going out and about. We bought a conversion van ... which makes me even more mobile. I'm still able to drive, so I load myself in and off I go! I actually went back to work a year ago May. I am the volunteer Director at our local food pantry. Volunteer, yes, but the emotional reward is tremendous! I wouldn't be able to work fulltime anymore due to exhaustion - I take a nap daily to recup. Sometimes an hour or more.

The best part is that I am still a part of life! It's all made my journey bearable. I get out, enjoy people, and make a difference! I've learned where I can go to use a handicap accessible bathroom, all places that I'm able to get into and out of myself. I've also learned that most people are wonderfully accepting and willing to help when asked. I used to hesitate to ask for help with doors, etc., but no more!

I hope this helps to give your Mum hope that life doesn't stop ... and I'm still a part of it!

[Aaron98 in reply to jolocny]

You are such an inspiration, JoAnn. "The best part is that I am still a part of life!"

[jolocny Volunteer in reply to jolocny]

My mistake - I was diagnosed in 2005, not 2015!

[monkeybus]

I like to think I'm incredibly mobile. Though, when able-bodied people see me walk they are invariably shocked.

More than anything, it's the foot-drop that bothers me the most. Crutches or no. If anything, I walk better without crutches. Over short distances, that is.

Recently started work again after seven months. I was worried, after half a year of being rooted to the kitchen chair. Didn't know if I could still pull it off.

Was alright in the end. Took a lot of 4-Aminopyridine, but I didn't fall over once. Standing up on the train, busy rush hour.

That said, my Mother-in-law is 60, she can cycle faster than me now. I'm 46.

[jolocny Volunteer in reply to monkeybus]

I have a product for foot drop that works really well, called "Foot-Up". Works really well. You can 'weave' the shoe insert into the laces of a shoe or sneaker, it's hardly noticeable wearing pants. I also have the foot wrap part so I can be barefoot (what can I say, I grew up barefoot!).

Google it!

[monkeybus in reply to jolocny]

Yes, I've seen these foot-up things. Keep meaning to buy some.

Thanks for reminding me. I'll check Amazon.

[KeithS]

I'm 50, my walking is a bit unsteady and laboured, it's a bit of a chore. I use shoe insoles from a podiatrists which help. I have the occasional stumble and very rare fall. I don't use a stick but always opt for a trolley at the supermarket.

[mariagno]

I am 54. I was diagnosed in 1995. I went from a stick, to arm crutches, and to a walker. I used the Bioness units for toe drop and loved them.

I had several falls starting 5 years ago. With the falls came broken ankles, a broken hip, and a broken vertebra. The ankles and the hip required surgery each time. It wasn't weak legs it was having enough control to balance me.

My vanity always made me put off the cane, the arm crutches, and the walker. I always felt embarrassed. Finally, my wife and doctor convinced me the surgeries to repair things were creating risks. I finally caved and started using a manual wheelchair.

I got a light weight TiLite and I love it. It is incredibly light and I can get it in and out of the car on my own. I used to avoid getting out and about to places like the mall or events that required long walks. I felt awkward and it was very slow to walk. I would tire easily and cut my trip short.

The manual wheel chair gives me exercise. I can get from one end of the mall to the other in a quarter the time that I could walk it.

That doesn't mean I have given up on my legs. I bought a NuStep recumbent elliptical and use it at least an hour a day to keep my muscles strong and to keep blood flowing to prevent DVT's. I also spend as much time in the pool as the Texas summer will let me. I have a set of motorized pedals to help keep my ankles flexible. I also still use a walker around the house.

The Nustep is a great device. You can use just your arms or just your legs. You can also use both. You can set it for cardio or use the resistance for a muscle workout. I sit without using the backrest and work my arms on the highest setting. This also works the core muscles to help keep me upright. Lot's of rehab places in the US use the NuStep and gyms are also starting to use them.

Stay flexible, too. Stretch out your legs. That prevents the odd spasm from knocking you down.

The final bit, you have to lose weight if you are carrying too much. I lost 65 pounds and found it help things massively in mobility and transitioning with the wheelchair.

Good Luck!

The NuStep

nustep.com/

Motorized Pedals

amazon.com/Exerpeutic-Motor...

[SpiceTiva in reply to mariagno]

I am also in Texas. Thank you for responding. I am the most symptomatic of my female family members. Your post has given me hope that life isn't over yet.

[ndjsx]

Hi yojo.

My partner was diagnosed in 2012 and he's been living with amn for 5 years now. He can still walk but only if he's using crutches. When he's walking around the house he has to use his crutches. When we go out he uses his wheelchair most of the time that he can do himself. Sometimes he will walk around the supermarket but he can get tired after a little while. He tries to do as much walking as he can. He has drop foot which means he finds it hard to pick up his feet. His legs will feel stiff most days especially in a morning or if he's been sat for too long. He tries to keep active. He pushes himself to keep mobile.