Trixie80
Distinguished member
- Joined
- Jun 21, 2014
- Messages
- 116
- Reason
- PALS
- Diagnosis
- 03/2014
- Country
- CA
- State
- BC
- City
- Abbotsford
Hello
I have been reading your stories since I was diagnosed on March 26th, 2014. It was 3 years since I first noticed a slight foot drop in my right foot, and a year after I seen a neurologist. In the past 3 and a 1/2 years my right leg has become a little weaker and now my left leg has started to show signs of weakness when climbing stairs, but still a 4/5 and 5/5 in all leg muscles (left leg). I get cramps in my quads when I stretch, but nothing too bad as well as some in my right forearm, when I move it in a different way. I now walk with a cane when out in public, it mostly keeps people from bumping into me.
I know I am early on in my progression but just wanted to share what I find helpful, and maybe can help others.
I see a chiropractor who specializes in applied kineseology (sp) who I see every other week for 15-30 min. He works on my nerves and uses pressure to open them up again. I'm not sure how it works (was never good at biology) all I know is my body works sooo much better afterwards. I have seen him for about 10 months and am sure he is helping me keep most of my strength.
I also began seeing a naturopath in January (before I was diagnosed) who has been a saving grace. When he found I had had been diagnosed he began researching different vitamins that may help slow progression, I'm not sure if they are working or not but dont care to know if they arnt.
I have read that many of you have problems with swelling in your legs, which I also have (pitting in my shins, when you press your shins and divits remain?) so he has me using a 'castor oil pack' for an hour a day (or whenever the swelling gets bad). This seriously helps take down the swelling to where it is normal after several uses.
A castor oil pack - drizzle a dishcloth with food grade castor oil and place over the swollen area then wrap in a plastic garbage bag, wrap it in a heating pad. I tape my electric pad so it creates a more even heating surface. Then just sit and relax for an hour.
Since I cant wear sandles anymore I have been in search of a shoe I can wear in the summer and that provides a little bit of support. I found some mary-janes on Amazon that have a velgro strap which can go over my ankle brace. (I dont think I am allowed to promote products sorry). My ankle brace is also from Amazon and works great for me.
I just went to my first follow up appt (GF Strong in Vancouver BC) to meet the physiotherapist and she thought I was doing great with a cane and my brace. They wrote me a prescription for a walker but said I didnt need it. And my Dr. said I had not progressed any, but then she didnt expect me to have since March.
I also got a prescription for R drug but not sure if I am going to take it. It is apparently really hard on your liver and I enjoy my wine and gin and tonic, which I'm not sure I am ready to give up for an extra month or two.
So thats my story so far and what i find helpfull.
I want to thank you all for sharing your stories, you are all inspirational, so caring and supportive.
Trixie80
I have been reading your stories since I was diagnosed on March 26th, 2014. It was 3 years since I first noticed a slight foot drop in my right foot, and a year after I seen a neurologist. In the past 3 and a 1/2 years my right leg has become a little weaker and now my left leg has started to show signs of weakness when climbing stairs, but still a 4/5 and 5/5 in all leg muscles (left leg). I get cramps in my quads when I stretch, but nothing too bad as well as some in my right forearm, when I move it in a different way. I now walk with a cane when out in public, it mostly keeps people from bumping into me.
I know I am early on in my progression but just wanted to share what I find helpful, and maybe can help others.
I see a chiropractor who specializes in applied kineseology (sp) who I see every other week for 15-30 min. He works on my nerves and uses pressure to open them up again. I'm not sure how it works (was never good at biology) all I know is my body works sooo much better afterwards. I have seen him for about 10 months and am sure he is helping me keep most of my strength.
I also began seeing a naturopath in January (before I was diagnosed) who has been a saving grace. When he found I had had been diagnosed he began researching different vitamins that may help slow progression, I'm not sure if they are working or not but dont care to know if they arnt.
I have read that many of you have problems with swelling in your legs, which I also have (pitting in my shins, when you press your shins and divits remain?) so he has me using a 'castor oil pack' for an hour a day (or whenever the swelling gets bad). This seriously helps take down the swelling to where it is normal after several uses.
A castor oil pack - drizzle a dishcloth with food grade castor oil and place over the swollen area then wrap in a plastic garbage bag, wrap it in a heating pad. I tape my electric pad so it creates a more even heating surface. Then just sit and relax for an hour.
Since I cant wear sandles anymore I have been in search of a shoe I can wear in the summer and that provides a little bit of support. I found some mary-janes on Amazon that have a velgro strap which can go over my ankle brace. (I dont think I am allowed to promote products sorry). My ankle brace is also from Amazon and works great for me.
I just went to my first follow up appt (GF Strong in Vancouver BC) to meet the physiotherapist and she thought I was doing great with a cane and my brace. They wrote me a prescription for a walker but said I didnt need it. And my Dr. said I had not progressed any, but then she didnt expect me to have since March.
I also got a prescription for R drug but not sure if I am going to take it. It is apparently really hard on your liver and I enjoy my wine and gin and tonic, which I'm not sure I am ready to give up for an extra month or two.
So thats my story so far and what i find helpfull.
I want to thank you all for sharing your stories, you are all inspirational, so caring and supportive.
Trixie80
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