student, looking for some answers

[AliceDaly04]

Hi, my name is Alice Daly, I currently a student studying social care and have to do a project on a disability for my course, part of my project is to have someone with my chosen disability to answer a questionnaire. if anyone feels comfortable to answer any of the questions about MS below it would be greatly appreciated. thanks x

1. What type of MS do you have?
2. What age were you when you were diagnosed with MS?
3. What is the most painful/worst symptoms you experience?
4. What types of treatments do you use or have used in the past?
5. Can you still drive with MS/ is it harder driving with MS?
6. If you have experienced a pregnancy/ giving birth was there anything relating to your MS that made it especially difficult.
7. Does any of your family members have or had MS?
8. Does anything specific trigger you to have a relapse?
9. What were the biggest things in your life that changed when you were diagnosed?
10. If any what type of adjustments have you had to do to your home to make it easier for you?

[Moirah]

Hi Alice
Here are my answers:

1. Primary Progressive MS
   2.66
2. No really bad symptoms
3. wonderful neuro physio
   5.yes I can still drive but right foot has a tendency to cramp on occasions
4. N/A
5. No
6. There are no relapses with PPMS
7. The ability to go for long walks
8. None so far

[ACT1]

Hi Alice, my answers are -

1 - secondary progressive ms
2 - 46 - but 1st relapse was probably when i was 24
3 - balance / walking
4 - Mayzent (Siponimod)
5- yes
6 - no - but was very tired
7- no - but dad had a brain tumor
8 - no
9- confidence- im scared to do alot of things because i dont know how they will effect me/how i will cope. example ; swimming - i dont know how i will get out of the pool and if i will have the energy to drive home. but there is a whole load of things - shopping, holidays, days out etc
10- grab rails, shower seat, perch stool in kitchen, crutch , foot brace, and functional electrical stimulation device (FES) to help walking

good luck with the course

[Poz1]

Hi, my answers below.

1. RRMS
2. Diagnosed 41
3. Symptoms not too bad yet
4. Ocrevus (Ocrelizumab)
5. Yes I drive, no more difficult
6. N/A
7. No
8. Not sure as I haven’t had a relapse since diagnosis
9. Nothing
10. None

[MS2017]

Hello Alice,

Answers to your questions:

1. Primary Progressive (PPMS)
2. 46 (just over a month before turning 47)
3. Worst symptoms are urgency to urinate and walking
4. Had Cladribine (off licence)
5. Yes still drive. My left leg is the bigger problem so switched over to an automatic so that I didn’t have to use my left leg on the clutch
6. Not applicable as I’m male
7. No other members
8. Don’t have relapses
9. Not so much on diagnosis but subsequently there have been a few things. Finding it difficult to do things eg getting very tired when doing jobs. Swapping from being the one who did most things to the one who needs most of the support.
10. It was decided when I was diagnosed to look to get an extension built down stairs so that, should I deteriorate, we would already be in a position to accomodate what I could and couldn’t do. So we had a bedroom and walk in shower and toilet built. All doorways are slightly wider so the only area downstairs that would not be wheelchar accessable, if I need one, would be the corridor to the front door. A ramp was built for the side door and decking in the garden, all level with the floor inside the house and no ridge doors, so there is no need to step down to the path/garden and a wheelchair can leave the house either via the ramp or onto the decking. My wife used to work in the community and went to clients who could no longer climb stairs so had a bed put in the lounge and this didn’t just affect the client but also their whole family as they no longer had access to a family room down stairs and neither of use wanted this to happen to us.

I hope this is of help to you and good luck with your studying.

MS2017