Monthly MS Symptom Changes

“If you believe it will work out, you’ll see opportunities. If you believe it won’t, you will see obstacles.” ~Wayne Dyer

I began these Regimes March 27, 2017. For this purpose, I’ll begin this monthly record of symptoms on the first of each month.

April 1, 2017

Starting weight 195 lbs

May 1: weight 184 lbs

June 1: weight 181 lbs

Down a full size, from size 14 to size 12 and size XL to L.

July 1: Weight 178 lbs

August 1: Weight 174 lbs

September 1: Weight 169 lbs

October 2 (whoops, one day late reporting): Weight 167 lbs

November 1 (my birthday!): Weight 163 lbs

December 1: Weight 162 lbs

I am a month late getting my “before picture” up, this picture was taken May 1.

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Me at 184lbs with AFO and cane at the Southland Leisure Centre where I workout
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Walker, AFO and very expensive shoes suited for inserts. Note: Can you find my cat Luna?

Mobility

Drop foot left leg:

Difficulty walking 2 blocks, need to rest two or three times. Walker required for mall trips. Walk with a cane all the time. Walk outside wearing an AFO (lower leg brace with steel insert that slips into shoe that keeps my toe up when walking).

May 1: I can walk 2 blocks without rest at a fair clip. I still need a walker on mall trips. Still using my cane. Using my AFO whenever I leave the house.

I feel like all my joints have been oiled and are moving smoothly. Every time I go to the gym, my movement has improved. It feels so good.

June 1: My mobility is getting better everyday. I still, of course, have a noticeable limp and still catch my toe and trip, but I did stop using my AFO, mostly because I want to bend my foot as I walk in preparation of walking better in the future, can’t do that with the AFO.  Biggest gain this month is walking well in a mall. I’ve avoided malls for three years. Ten minutes walking and I am completely fatigued, no fun and shopping is worse. I have gone shopping to the mother of the malls here in Calgary, Chinook Mall, twice. I went May 14th, with friends and shopped for three hours with a 20 minute break for coffee in the middle and I sat out the last 15 minutes. During that time, I tried on clothes during visits to nine women’s clothing stores.

Second trip: I had to return the outfit that I bought above, because two weeks later when I tried it on, it was a full size too big. This time, I went to the mall by myself and I wasn’t afraid. I walked to the store, which was the last one we went to, 3/4’s across the length of the mall without any problem. Tried on the smaller sizes, they fit (yay) and walked back, stopping at another store on the way back. A full 45 minutes and I didn’t need to sit down!

July 1: Stamina is increasing. We went to the New Brunswick Botanical Gardens just last week while on vacation in Quebec. I traversed eight acres square with a cane. Events like zoos, parks, fairs, I need to either rent a wheel chair or bring my walker and then I invariably end up sitting half the visit out somewhere. I did need to stop half way thru and sit for twenty minutes, the rest was good. Total three hours to see all of it. Amazing! Around the pool without my cane, I am steadier and more sure in my gait. A woman who has seen me around for three years at the gym, asked me what I was doing because my walking has improved so much. I told her about Wahls, briefly. She replied, “But, you must be exercising too, right?” I answered, “Well, yes, always, but I have increased it two extra days.” She came back quickly with, “Well, there it is, exercise.” So hard for anyone to swallow the idea that it could be the food we eat. (no pun intended)

August 1: I am gaining in strength. Getting stronger on stairs (my worst). My drop foot damage stems from weakness in my left hip and glute and so, lifting my leg up with bent knee is hardest. When I walk or go up stairs I swing my left leg out in an arc. I am concentrating on stopping that, I think because of the weakness being where it is, I’ve compensated by developing this habit. I am working on consciously bringing my leg straight up or straight forward, walking or climbing stairs. It is working, hurts like hell though. This is where E-Stim is going to help the most. I am feeling that I can walk more and more without the aid of the cane. This is not something I will do gung ho though, because when I fall, its a good one. What I am doing is bringing the cane with me and leaving it as I walk the inside of buildings not using the cane, or when walking outside, holding the cane horizontally and just walking till I feel I need it. The length of time on these free cane walks is lengthening.

September 1: I am approved by AISH to get the Electrical Muscle Stimulation machine for the purpose of rehabbing my left leg and to begin with physical therapy. I found a place who are experts at this, Spinal Injury and Neurological Rehabilitation. I will go there. I will begin this sometime in October after carpal tunnel surgeries are healed. My walking keeps getting better, I fatigue in about the same time as before, but the walking in the mean time is better. I am told by others that its not just my walking, its also my posture. I am walking straighter. I went out without my cane last night and this morning and I did well. I didn’t feel unsure, I was strong. Did trip a couple of times, but my strength in catching myself has increased.

October 2: Beginning e-stim tomorrow at 11:30 with a physical therapist with my machine from AISH. Each journey begins with one step at a time, speaking of which, my walking is progressively getting progressively better. I am walking bolder without the cane and do not feel the need to watch the ground obsessively frightened that I will trip. I still do trip here and there, but few and farther between and not as dramatic. I am beginning to lost my fear of falling. I’m not getting cocky, rest assured, I am still prudent, but my walking is gaining enough strength where I fear it less and less each day. I still fatigue after walking more than a kl and when standing for an hour in line for a movie, had to sit twice. So, my leg still has its “expiration point” as before, but before that happens, I am far stronger in gait and balance.

November 1: I am approved for 10 weeks physio, took a while for this to come through. I will begin probably next week, waiting for paperwork to arrive in the mail. My walking is ever improving. My stride is longer, stronger and surer. I still have a limp, but at my strongest times, the limp is not prevalent. I still fatigue after a lot of walking and then need to sit for 30 to 60 minutes, depending on how badly I fatigued my leg. But, then I’m go to go. That is the norm. Fatigue happens, what doesn’t happen is the two hours of strength before. Off my cane over a month now!

December 1: I am three sessions into my physio and using e-stim 20 minutes daily. Physio is making a huge difference. I am doing the exercises most days. My walking continues to improve. Milestones this month are the beginning of not fatiguing at the typical time. I’m having days of out and about walking and not fatiguing or needing to rest. And I MC’ed a day long event for the first time since 2009 and did very well.

Balance

My sense of balance is terrible. Half my falling is due to this. I tip and waver when walking much like walking a tight rope. Without the cane, I hold onto walls and stationary objects to stay steady.

May 1: My equilibrium has improved quite a bit. Still tippy, but able to traverse the gym without my cane without to much trouble. Still need to grasp for leverage, but not half as bad.

June 1: I’ve stopped bringing my cane with me to walk with in the pool area. I am not hanging onto walls without it. I do tip from time to time, but not dramatically so, nor all the time.

July 1: As stated above under mobility in the pool area. I am still tippy, but I’d estimate that from where I started, I’m 60% better in this area.

August 1: This is becoming remarkable and is another factor that will make it possible for me to let go of the cane. My sense of balance is improving dramatically. While I still do tip here and there, I am walking straight without tipping at all at times. Way Cool!

September 1: As remarked above, I went out without my cane last night and this morning and I felt confident without it. Big deal, it has been necessary for me walk to with a cane for three or four years now and I was pestered to use a cane long before that because of my falls. I am still tippy, I do still lose my balance, sometimes suddenly. That’s an old problem, but it has improved, I would guess 60% from what it was five months ago. I will have to deal with looking drunk getting on and off the bus again which happens without the cane. No one would sit with on the bus, then I got the cane and that changed. I realized, I look drunk because of my balance issues. Oh well. All part of the rehab, this won’t work if I let my ego in the way and worry about what others are thinking. I don’t care. I want to walk without the cane, I have practice out there to do that.

October 2: This too is getting progressively better. I do still teeter and totter and suddenly lose balance, but it is lessening. And yes, I am back to looking drunk again, but that too is getting better. However, earlier this month, I tripped into a store and without the cane to clue anyone into the fact that I have a mobility issue, I was followed around the store the entire time I was there. Oh well, whatever.

November 1: My balance is improving, however just as my leg fatigues, so does this. Once I am fatigued, I notice my gait becomes increasingly unbalanced. It is on the whole getting better. Where I am still most affected by this is when I am between two people, two objects, a narrow section of sidewalk, crowd, whatever. Here I lose my perception of where I stand. That’s hard to explain. This needs to go before I will be completely confident to pursue driving again. My forecasted blue print is to go for my license in 11 months. Still time to heal some more!

December 1: My walking balance is improving as well. I still tip here and there. Although, I did need my son to screw in a light bulb with me for a lamp that required me to stand on a chair, reach up without anything to hold onto and unscrew the cover. Could not do that. Serious vertigo. We’ll test another month to see if that changes.

Depth Perception 

“Bang! Slam!” I misjudge the distance of things, usually mistaking them for being closer then they are, such as cupboards and doors and placing things down, etc.

May 1: No change that I’ve noticed

June 1: To be honest, I haven’t thought about it either way, I think that may be because I’m not doing it. I will need to make a concerted effort to notice if I’m slamming doors.

July 1: Okay, I made a point of paying attention to how I am doing with my depth perception and have concluded this. I hadn’t noticed it, because I’m not doing it anymore!

August 1: Still doing well here. This is one of the problems that took away my ability to drive safely. I really can see a day when that will change.

September 1: Improving, its not altogether gone, I’m dropping things a lot, but that could be carpal tunnel too, which I’ll talk about at the end.

October 2: This is the one that I pray gets good enough for me to be able to drive again. I am doing alright with it, I don’t see me slamming doors anymore, that was the most obvious sign before. Time will tell.

November 1: See info above about enclosed walking spaces and perception. Otherwise, it continues to be better.

December 1: I don’t think about it anymore.

Cognitive Functioning 

I have rehabbed a great deal here due to Occupational Therapy. Here is what I still deal with:

Short term memory challenges:  Difficulty getting new information to “stick” or make its way into my long term memory, especially numbers, names and makes of cars.

May 1: I am retaining information better. Not a huge difference.

June 1: My memory is a lot better, I am retaining a greater amount of information. I’m still terrible with names though.

July 1: I still need to work at memory, however it is better every day. What is one hundred percent better is cooking. I have burn and cut scars all over my fingers, hands and forearms. The burns are due to forgetting the pan is hot or forgetting about the hot rack above the pan I am taking out of the oven. Cutting is from depth perception issues. Both have improved dramatically. I’ve had one small cut chopping veggies in Quebec and that’s it.

August 1: I am remembering names and details concerning new acquaintances better. Not completely there, but I’d say 50% better than when I began.

September 1: I am improving here, but I am also challenging myself with increased brain work. I had a challenge last night at a, at first, confusing planning meeting where I had to communicate detailed information from a conversation that occurred 30 minutes before the meeting. I was interrupted five times, and each time I had to restart, it was necessary for me to repeat all that I already said to mentally get back to the rest of what I had to relay. The fact that I could do it at all was impossible not long ago. What is most remarkable, is that I was able to converse and problem solve in the conversation before, understand it 100% without 24 hours to let the logistics sink in, remember it without writing it down and relay the information so that others could understand the info to discuss it at a meeting that had a very chaotic start. This whole thing would’ve been the cause of a crying jag, which is why I stopped anything like it eight years ago.

October 2: Where as I was getting better in this department so rapidly, I made the mistake of letting go of hard acclimated too habits of keeping things in the same place always, documenting schedules immediately, keeping my household organized. I did run into stress and fatigue over this and so, after chastising myself soundly, I am putting energy into getting these habits back in place more firmly. There good habits to have anyway. Thus, I obviously still have issues here and maybe always will. I have improved, enough so, that I felt okay to be lax. So, improvement.

November 1: This just keeps getting better. I am remembering names and now makes of cars. Word retrieval is still an issue, but only when I am tired. Susan, Kathy, and Sherri are three ladies I swim with over two years now. Up until one month ago, I could not remember their names. Susan, Kathy and Sherri, I am remembering!

December 1: This has been truly remarkable for me. I am beginning to remember makes of cars. I have not been able to remember the car’s color or its make for years. Remembering names continues to improve as well. Yay!

Losing and misplacing things: Rehabilitation helped me learn to keep things in the same place all the time. I don’t move furniture around, my keys go in the same spot in my purse when leaving and in a glass jar assigned to them when returning. Everything I do is calculated this way, credit cards, clothing, whatever it is. It has an assigned place and I have learned to be rigid about this. I had too, I was having daily break downs over the fatigue of constantly losing important things or endless time wasted looking for this or that.  My prescription glasses include transitions because without it, I lost four pairs of prescription glasses and so many sun glasses, I was replenishing them at the Dollar Store.

May 1: I feel sharper, whether I am or not maybe time will tell, but I do feel sharper.

June 1: I am not getting as flustered if I misplace something. I am able to think it through and find things. Not always, but half the time. This is new.

July 1: I had a good test with this this past month. We spent the latter two weeks in Quebec at someone else’s home without my stationary routines and static places for things. It wasn’t bad. I did establish places as soon as I could for certain things, but you can only do so much of that in another’s home. All in all, I found things, I remembered actions when tasked to go back through my movements to find things and, while irksome several times, it was minor. I used to completely fall apart when things were moved to often from the fatigue of trying to find things and readjust. That would produce a crying jag. I don’t get fatigued like that, because I am just doing better in this department. Not one hundred percent, yet, but getting there.

August 1: This too is getting better every month. To the point where I am tempted to be lax on the organizing habits I’ve needed to have in place to function better. Those habits are good ones, that I want to hang onto because they will serve me well when it comes time strike out and work.

September 1: Same as above, temptation to let go of needed organizing habits. One of the reasons for this is because, while I am still very strict with my activity schedule and consistently keep them the same days, I have added things in between that cause me to blow off this, or not put away that. That has to stop. Strangely, I think these carpal tunnel operations will help me do that, because I will have no choice.

October 2: Predictively, the carpal tunnel surgery made this worse not better, therefore, do not hire me to be your seer. As stated above, I am working to get things well organized again. Just about there. I have lost a letter, however, I believe I did not get the letter. Memory loss? Or, I just didn’t get the letter, don’t know.

November 1: Still improving, however I must stay on top of organizing habits as I introduce more into my schedule. Fatigue is what I will always need to guard against with this illness, no matter how well I get. If I am mindful of where things go and do not waste precious time and energy on looking for this or finding that. I can do more.

December 1: Bought three pairs of gloves after losing two pairs. Still an issue, but the only problem I’ve had this month were the gloves.

Logistics: I have many years of organizing and creating grass roots non-profit events, fund raisers and four day camp outs with an average of 4-6 thousand attendees featuring a multi-faceted schedule of entertainment and sports. My resume boasted multitasking as one of my greatest assets. No more : (

May 1: I feel sharper

June 1: This is a big change. I am getting very excited about this, because this is an area that I was very good at. I find my self doing a lot more juggling, talking on the phone while looking things up on the computer, conversing and thumbing through papers at the same time. Could not do this at all before!

July 1: This is exciting for me. I am thinking logistically again. I’m on top of it! Can’t believe it. I’m not all there yet, I still miss pertinent information at times. Quebec was challenging at times with this due to plans and discussions in a language I don’t speak fluently. However, I was able to take the miscommunication in stride and figure it out or ask for better explanations without getting confused or angry. I was assertive (some of these plans (involving us all) were made between my daughter and my ex-husband, both of whom speak perfect English). I see a car in my future and I see me driving it, further I see a job in my future that requires me to multitask and I see me killing it!

August 1: Feel more and more like my old self. The urge to take on more responsibility is one I am fighting off right now. I do not want to chew off more than I should yet. Too soon. My energy needs to go into rehab right now, so that I have the very best chance of making it when it is time to take on more responsibility. I have carpal tunnel surgery on both wrists that I have a consult for tomorrow to plan the first of two surgeries for this then when that is finished and healed, then it is time to begin electrical stimulation therapy on my drop foot leg, first with a PT then at home an hour a day. I don’t want to be impatient and jump the gun. All in due time!

September 1: I am secretary for a non profit that I have been involved with for over 26 years. This position is the first position like this that I’ve taken since 2009. I’m doing well with the position, which is not a lot of hours, but can get a little complicated at times, however, I am keeping up. See September under logistics above for more information on how I am doing with this. Coming up is a province wide voting assembly for this non profit. This will be my first since 2009. I am excited and will only be an observer, so no pressure. I’ll report how I fared physically and mentally with it all in October.

October 2: I took way too much on this month and I did pay a price in losing traction with where I was at on the Wahls Protocol, which was Level III, I slid back to Level II. I am back in Ketosis (level III) and have simplified my schedule by canceling the second carpal tunnel surgery on my non dominate hand, am not doing any conventions for a while and definitely not taking on any major non profit commitments, the small non profit commitments I do are enough with what I am doing here, and I am working to get my budget back on track. I am doing better here, but over shot the mark to fast, too soon.

November 1: Logistics, my thinking is faster then I can sometimes keep up with : p Sounds ridiculous. What I mean by that is, my thinking, my grasping ramifications of situations, my trouble shooting, and my intake of details have all improved. But, I can get fatigued by it. At times, I still need to run it by someone, analyze it and give it 24 hours before acting. And sometimes, I don’t need to do that. No total messes have happened, so my thinking is on track. Gaining confidence here a little at a time.

December 1: I am feeling more and more like my old self. I MC’ed and co-chaired an event that went very well. My thinking was good, I had no problem with any of the organizational components. Developing was clear, clearly communicated at every stage. On the day of the event, which was a success, it was liking riding a bike, like all the years disabled were never there. Felt good. Did deal with my leg fatiguing, however, it did last far longer then I thought, lasting most of the day.

Quick Thinking: I am no longer able to think quick on the spot. It takes sometimes two or three days to understand the gravity of a situation. If forced to make quick decisions on new information from wherever it comes, misunderstandings happen, social messes, hurt feelings, etc. Its like my brain is in a fog.

May 1: All I can say is I feel sharper, thinking with better clarity, feel like I am leaving the fog.

June 1: The brace is being removed from my brain. Better everyday. I’m quicker with my comebacks in conversation and logistical thinking.

July 1: Yes Sir, the tack is sharpening. One thing that is improving is my ability to take in more detail in my surroundings. I have a friend who would get frustrated with me because I couldn’t remember directions, new information was hard to retain and I would be told about the same landmark and never remember it. I had noticed finally why that was when I took the same bus and train to a part time job two years ago from 2013 to 2015 and realized one day that I didn’t realize that the Calgary Tower (a major landmark here) was between two streets I crossed every time I took the trip. What I realized was that my brain blocked it out, couldn’t take it all in. That is what is going away. I am taking in detail and I am able to recount it. I still do have multitasking issues if someone gives me information while someone else is talking to me, I still don’t remember it.

August 1: Honing my multitasking skills a day at a time because they are being returned to me a little more everyday.

September 1: I’m thinking too fast, its the Ketosis level III and some of the supplements which improve brain functioning. I’m not used to it and feel like I am on speed. I can’t shut up and find myself apologizing a lot for over gabbing. Even when I am alone, I’m talking out loud. This is something that I understand I will adjust to, but right now, its a pain, an embarrassing pain. Yet, the excitement is in the future possibilities.

October 2: I did adjust to the speediness of Ketosis and then fell out of is, causing me to go thru another adjustment back into Ketosis (truly, that part is not fun). I’m through the sick and back to the, blah, blah, blah over talking part. While my multi tasking abilities are improving in comparison to what they were, I still have issues with it. For example, if making a pot of coffee for company and talking at the same time, I stop making the coffee, if I’m making the coffee, I stop talking (today).

November 1: I think the November update for logistics says it all here too for this month.

Socializing: I am a very gregarious person, I love people, love meeting new people and experiencing new social situations. These days I am okay in long familiar situations. But, outside that, in new groups of people, for example the ladies I’ve been doing deep water aerobics with for three years, I barely talk to them, which isn’t me. I am often the one to begin a conversation, or make a joke in the group. Its like I have a brace on my brain. Sad.

May 1: This is a big difference here. I find myself speaking up in public situations with people I don’t know. I feel like I’ve had a brace on my brain and its lifting.

June 1: My comfort level with people in the situations above are increasing. I find as a result people who have shied away from me because of my frozen personality are gravitating to me and becoming jovial, because I am more at ease, I am thinking that much better.

July 1: I regain a little more of myself every single day. I have had a habit of repeating the same story constantly (not fun for the listener). This is improving in that I am more aware of it and able to catch myself sometimes.

August 1: I am becoming quicker with on the cuff conversation with less familiar people and my self confidence is really beginning to build back up in this area.

September 1: The last few months, I am at that age, where family you know and love are wrapped up in their own lives. It is no ones fault, it just happens. I had some sad days over not fitting in anyone’s life in my immediate family. What I did do is reach out and let friends and family know this, I reconnected with a friend, who is also facing this time in her life. And my non profit activity increased, that brings more associations with people and reason’s to connect and I reached out to some friends from a part time job I had and we’ve reconnected. These are people who are great to talk with. Now, the fact that I got out and did the reaching out is a sign that I am getting better. But, how will I stop myself from talking their ears off?

October 2: My socializing has definitely increased, lots of coffee rendezvous and small events. I tried to chew off big events (convention), that was too much. I am taking my outings one day at a time, while keeping up with my scheduled routine of exercise and not for profit work.

November 1: I recently had coffee with a friend that I haven’t spoken with since this past winter before I began the Wahls Protocol. We had a wonderful catch up conversation. She looked fantastic. She had changed her style so dramatically and it suited her so well, that I didn’t recognize her when I walked into the coffee shop. She did recognize me, but she knew what to expect as she had followed my blog at times. She said two things she said that are important to reiterate here. One was, she didn’t believe that the blog was my writing because I had tried to do some personal writing when I was sick this past winter, but she said that that was not good writing, which is why she didn’t believe at first that this was me, till she read my stories. She thought, “It is her writing, she’s talking about herself.” I got straight A’s on all my written works in college, the bad writing this past winter was increased cognitive damage. The second thing she said was that she had stopped calling me because I was repeating the same conversation every time she called. She was most excited to see how sharp I am again and wants to stay in touch. I am not a perfect writer, and my grammar and typos are numerous, mainly because this is a daily blog, warts and all.

Working: I am on disability since 2004. I tried transitioning off twice. The first attempt was to back up my organizing experience with a degree in business and writing. I got half way and had to drop out because of the cognitive attack suffered in 2009. I managed 64 college credits at a 3.76 GPA. The second attempt was in 2012 and was a jewelry making business. I have been a jeweler since 1992. I make intricate beaded art jewelry. I worked part time at a bead store (first job since cognitive attack). I couldn’t work the cash register, but I could talk about the product and teach technique (25 years experience, a long time situation). They needed to give me “sit down” jobs. I worked 11 hours a week in two shifts. I set up an Etsy shop, a website, Facebook page, Twitter account and joined the Etsy Bead Embroiders Guild. I entered contests and won. I did a few local shows. Alas, I couldn’t keep up the online sites and they fell one at a time. My job I did manage to keep almost two years, but it was getting harder and she finally let me go. The shows, I needed friends and family to help me and even that wasn’t enough. I stopped the shows altogether and gave up. : ( : ( : (

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Collar I created called, “I miss the ocean”

May 1: I am not doing any bead work right now as I focus all my energy on this diet lifestyle and this blog.

June 1: Bead work is a meditative past time for me, I am still not doing any bead work as it is taking everything I have to learn and implement this Protocol. I have made a pact with my self. A visual: I see my self going back to work in one year and weaning off disability in one year nine months. At the speed in which I am feeling and doing better, I can’t see why not. Many others on the Wahls Protocol have done the same.

July 1: I am beginning to get that, “chomping at the bit” feeling. I know better than to attempt to work yet, too soon. I need to heal more and work to rehab my leg, my thinking and work deeper into this diet, i.e. Ketosis which is Wahls Paleo Plus.

August 1: As stated under the heading Logistics and I’ve begun Ketosis which I am going to give its own heading at the end of this list.

September 1: I feel the re-engagement in former non profit work I did will be good practice for a paid position in seven months. I looked over ads for Telus today. I’ll start considering the position and companies. And when I have an idea (January), I’ll start polishing up my resume. I’m on a mission. But, first gotta get the wrists and left leg healthier and stronger, get adjusted to the faster thinking, practice controlling the over talking and let it happen.

October 2: As hard as this past month has been over doing things and getting overwhelmed with a complicated schedule, I am chomping at the bit to work. I realize, not yet, but I’m working towards it psychologically. Yesterday, I took out my resume to consider how best to update. I looked up how to get my college transcripts and I took a 30 minute look at the Calgary job market. Three big steps. I’m looking at actively seeking a job in three months maybe, or maybe it will take the whole six months as originally envisioned. However, keep in mind, many steps must be taken. I need to fully understand the programs of two government disability programs, not one that they both have in place for weaning off disability and attempting to work. I need to see if I will have a problem obtaining my college transcripts due to a complete bankruptcy due to the cognitive attack I had in 2009. I need to carefully consider what I can’t do, like most probably stand all day, sit all day, maneuver a mouse all day. I do know that the job I take will need to be a combination of movement, sitting, standing, walking, computer, so on.

November 1: I am going to see my Neurologist on November 3. This will be the first time I see him face to face since beginning the Protocol. He hasn’t seen the changes. Interested to see how that goes. I am grateful that he has been so accommodating in regards to the paperwork and prescriptions I needed for physio. I am going to ask him for help with rehabbing for full time employ. With MS social workers, occupational therapists, a psychologist. I had spoke with my disability worker two days ago regarding the same thing. I requested to meet with her in two months to go over in detail a plan for me to try to work. I need to know that I’m protected in case it doesn’t work out. I am a visionary person and want to envision myself working successfully off disability, however I am also a realist and I fully understand that there is every possibility I won’t be able to do more than a small part time job. I will give it all I got to make full time work, but I need to know that I won’t be punished for that. That might be bad wording. But, that’s how I feel.

Driving: I began having minor accidents (fender benders) and lots of near misses. The difficulty was stemming from two of my symptoms, depth perception and inability at times to multi-task. It gradually dawned on me that driving was becoming a problem. When it came time to renew in 2011, I made the hard decision to not renew. Obviously, I made the right decision, because my kids were thrilled I wasn’t driving anymore. As you can imagine, this has been the hardest thing for me to live without. But, I am lucky to live in a city that has an excellent public transit system and has a program called, “Access Calgary” for people like me who need extra assistance getting around. I use Access a lot in the summer because of the hot weather, for long complicated trips and when I go to the gym. Otherwise, I take public transit. Second point that helps me live without a car is the expense. I save a lot of money as a result of not having a car. However, I see myself driving in the future as that damage reverses! Don’t worry, I’m not so naive that I think that all the damage will reverse having had MS since 2004. But, I hope this is one of them that will.

May 1: No change

June 1: Whereas multitasking, clarity of thought and memory is improving. I feel, I probably will be able to drive eventually. I have a visual pact that I will get my drivers license in one and a half years and I will buy a car in two years.

July 1: I have no doubt that I could probably drive now in controlled simple driving situations now. My thinking and depth perception have improved that much. My plan is still the one above.

August 1: My son, one of the ones who was thrilled when I chose not to renew my drivers license, now says, you could probably drive okay now, you’d for sure be better than some of the ridiculous drivers out there. That’s progress, I think. I am still sticking to my original blue print: One and half years on the Wahls Protocol I will pursue my license being reinstated, (will have to do it from scratch and pay a lot of money) and I see myself with a car at 2 years on the Protocol.

September 1: When it is time to finance my car, I am leasing. Love leasing vehicles. Same plan, in 2 years. The car payment is about the same (work in extra mileage at the beginning of your lease). Leasing includes roadside assistance and bumper to bumper coverage. Then, you turn it in after 2 or 3 years and get another one. I am not a big fan of having a car that will throw repair curve balls at me. Leasing, I don’t have to worry. That’s how I’m doing. Its not will I drive, its when.

October 2: A friend offered me the use of his car when I am ready to begin practicing. Not yet, but when I am, I will definitely take him up on his offer. I do see myself driving one day. I’m not beginning now, mostly for financial reasons. I need to be working a few months to afford the work to renew my license where its been six years.

November 1: On all fronts, but one, I feel I could most definitely drive and do well. The one front that could stop me if it doesn’t get better is vertigo. I still have a problem with that. It has improved greatly, but if I am between two people on a sidewalk or have to walk in a narrow walkway, I lose my balance. Can’t have that when driving, you have cars and people on either side of you constantly. It could be driving won’t be the same as walking, maybe my balance will be unaffected where I will be sitting. But, I won’t be trying for another 11 months. Time to heal some more.

Muscle Weakness Bowels: I said in a blog this month that I would include these humiliating symptoms because change has happened and because many people with MS suffer these symptoms. I have had ten public accidents in the past nine years. Not a lot, but enough. What is constant is forever guarding against the next accident. Always knowing where the bathrooms are, how many steps to get to one, being endlessly in tune with how I’m feeling down there. Frequently cancelling plans if its an iffy day. Being in public and barely making it, this was weekly.

May 1: I haven’t had problems since the second week of April, although I’m still wary. Hesitant to let my guard down. Too soon.

June 1: No accidents or near misses. I am beginning to feel more confident as evidenced by my foray to Chinook Mall with friends and then alone. I am still wary though. I don’t want to get overconfident lest disaster strike.

July 1: Not an issue anymore! My son has noticed, having just taken to trip with him by plane to Quebec with layovers and all the activity we’ve had on the trip, that I am no longer obsessing about or running for bathrooms.

August 1: Non existent problem! Didn’t give it a thought, however part of me still feels wary to be cocky about these statements, as I look for some wood to knock on. However, truly, not a problem at all this past month.

September 1: I had two near misses this month. The only ones I’ve had since beginning the Wahls Protocol. These were due to adjusting to the Wahls Level III. Level III requires you to eat five and a half tablespoons of fat per day consisting of combinations of coconut oil, high fat coconut milk, olive oil and animal fat. With the emphasis on the coconut fats. Wahls says it is better to build up slowly over three weeks, which I did do. No problem now.

October 2: I really do feel that this is a non existent problem now. I don’t run for bathrooms, I don’t worry or have to obsessively worry about it. What freedom, freedom I haven’t had since 2009.

November 1: Not a problem. Don’t worry about, don’t think about it. Its all good.

Bladder Muscle Retention: It is necessary for me to apply pressure on my abdomen to urinate everything out. If I don’t, I get urinary tract infections, which did happen four or five per year for eight years till I finally figured that this was the problem. None of the doctors knew. It did turn out that this particular symptom is from a severe compression I had in my neck that resulted in a fusion to alleviate pressure on the spinal cord that had resulted in this damage. I have it here, because you never know, maybe it can heal once I am practicing Wahls Paleo Plus which will be Ketosis.

May 1:  No change

June 1: No change

July 1: No change

August 1: No change – I don’t think this one will change as it is residual damage from a compression on my spinal cord, would be nice, but, damage that is easy to live with.

September 1: No change

October 2: To be consistent – No change

November 1: No change

Sensitivity to Heat

This is one of the first symptoms I had. Several years before diagnosis, I was walking one of New Brunswick’s beautiful public gardens on a 90 degree day, I began feeling sick, almost as you would feel the heaviness before faint, or very high blood pressure. My head was buzzing (not pleasant). I stumbled to the air conditioned cafe and after ten minutes of cool air and sipping a cold drink, I felt better. “Weird.”, I thought. These days, it is one of my most crippling symptoms. Grateful I only have to deal with it in the summer. I am opposite everyone else, I don’t complain ten months out of the year, but summer turns me into a recluse. While other people winterize, I summerize. I have black out curtains on the windows to keep the sun out (can you say Vampire), two air conditioners, cooling scarfs for when I have no choice but to go out on a hot day, a portable spray bottle with a little fan, manual fans I carry in my purse and a good portable rotating fan at home. I plan my days according to a closely regarded study of the weather. No wonder I’ve come to love winter, I have respite from the bother of all this.

May 1: Time will tell, summers not here yet, my guess will be that this one will take time, but I did read how Dr. Wahls felt well enough from this problem after just 6 months enabling her to tolerate Saunas.

June 1: I am a little better. I started using the Steam Room at the gym for detoxing reasons and am able to tolerate for 10 minutes. We had a 29 C day yesterday, it got hot in the apartment, I was uncomfortable, but not as sick as I would’ve been a short time ago. That to me is improvement.

July 1: Had plans this coming Friday for the Stampede Parade, which I cancelled today because it is predicted to be 32 C/90 F that day. Heat is still an issue, although it is better. But, not that better.

August 1: This is getting better. Psyched! We are having a lot of 28 C to 32 C/82 F – 90 F this summer. I am using my air conditioning half as much as I would’ve a year ago for these temperatures, night time, I’ve used that air conditioner only twice. The fan has been enough. Outside, I don’t feel sick, I get hot like everyone else, but I am not having that horrible sick feeling I get. I have not spent the day outdoors and really tested this yet, but I am gaining in confidence in this area. This symptom is my oldest and has been with me since 2002. Ketosis, is where I feel the most dramatic difference.

September 1: Still have a sensitivity, but it has improved dramatically. We are having hot days now. Today was 35. I did use the air conditioner in the late afternoon, but won’t need it tonight, the fan will be enough. I will not use the steam bath or hot pool at the Leisure Center after swimming, but instead before, so I can cool off when I swim. Learned my lesson there.

October 2: All in all, this one is better. I can still over heat and learned my lesson with the hot bath at the gym. I was conversing with a friend, but as soon as I felt the overheating, I didn’t push, I got out. I also make a point to use the hot bath first, then hit the pool for my workout. Cool off there. But, I do not get sick as I once I did. I do weaken, but not to that degree. Be interesting to see how next summer will be.

November 1: This really is better. It is still there, but like bathroom problems, not something I agonize over anymore. It has been one of the most crippling problems I had. Yay! I can still weaken, but I test myself sometimes. Today was one of those days. I went to the gym and had to swim first then hit the hot tub and then the steam bath. Admittedly, I was weakened at the end of the steam bath, but took a cold shower and that was all I needed to snap me out of it. This was impossible not so very long ago. Later in the day, I went to my Doctors appointment. I arrived an hour and half early. The hospital was warm, but I made a point of keeping my sweater on to see if I would move beyond uncomfortable to weak, sick and nauseous. Three hours at the hospital all told and I stayed in the uncomfortable range with my sweater on, never did cross the line to sick. I am very excited about that.

Mid-Back Electricity

Due to lesions in the Thoracic spine, I have what I can only describe as a white hot electric heat across my mid back. Lower back weakness. When standing for example doing dishes, I experience a painful weakening in my lower back, requiring me to sit often when doing standing work.

May 1: The electricity band has not changed. The weakening in my lower back has changed dramatically. I can stand and do dishes and vacuum without pain or needing to rest.

June 1: The electricity in my back, while still present, is much, much better. I couldn’t lie on my back comfortable and not at all for the last year because my neck would hurt, my lower back would hurt and my legs would go numb. I have no problem lying on my back now and even after a big physical thing like grocery shopping, I can bend down and pick up my cat and do the dishes and put the groceries away and my back is not weak.

July 1: This has been a dramatic area of improvement for me. The electricity in my back is not there most of the time, when at one time it was constant. Lower back weakness is a thing of the past!

August 1: Its just not an issue for me at all, so much so, I had an MRI yesterday that had been ordered for me back in March when I was my sickest before beginning the Protocol March 27th. I almost cancelled it, but changed my mind and had it done yesterday, good thing too. It was for my lower, mid, upper, neck and brain and I thought it was my neuro, but it wasn’t, it was the neuro in the emergency room that ordered these. I forgot, it sunk back in as the tech clarified my misunderstandings yesterday. That’s the fog I lived in just four months ago. This will be a good baseline. Very interested to see the difference between this one and a new one one year from today.

September 1: The MRI, I’m happy I did have, showed two new lesions in my lower back. I already knew this. I know how sick I was this winter. I wasn’t surprised when I got the results. They didn’t do this with contrast, which will show if any lesions will “light” up, meaning its an active attack. I am sure they’re not lit up now, because I don’t have that sick feeling that comes with attacks, but I am sure, they were lit up last winter. With the damage I have everywhere, I shouldn’t be doing this well, walking this well, talking this well, thinking this well and yet I am.

October 2: I do have it still, but it has lessened considerably. It doesn’t stop me from standing or doing dishes or the like. I remade my bed for complicated fall duvet changes and the like. Ordinarily, this kills me. But, I was okay. It was my back that made it difficult before. Right now, however with all this typing, my lower back is numb right now. So, it is still an issue.

November 1: This has been acting up more this past month or so. Not weakening anymore, which is great, but numbness, I’ve had a lot of numbness through my mid to lower back spine. Leg spasticity has been a problem again at night, not as bad but its still a problem.

Fatigue

A book can be written about MS fatigue. My experience, I ran a major, around the clock festival that attracted thousands of campers over the course of four days. When it was time to put on the actual event, you worked tirelessly for four days before to prepare the campground and deal with all the last minute unforeseen fires and whatever, then the four day event, where I was lucky if I slept four hours a night, it was none stop Adrenalin and action (once upon a time, that’s how I did everything). Followed by four days of non-stop clean up and administrative work to tie it all up. Then the crash, physically and mentally wiped out, sleep for a solid two days. That’s what MS fatigue feels like only without all that!

May 1: This is where I feel the most better. I feel like I’m on speed. Its been so long since I’ve felt energy like this that at times I can hardly contain my self.

June 1: Not as manic, have adjusted to the huge boost in energy. My duration for activity has gotten a lot better as stated under mid-back electricity.

July 1: I just took a two week trip to Quebec. Two years ago, I cancelled a trip 20 hours from here to my brothers because I had taken a trip 45 minutes away to Banff Park for three days and it was a disaster that culminated in me being sick for a week after. I just flew 3,000 miles and stayed for two weeks/half a month and only had one bought of fatigue that hit yesterday morning. The night I got in, I unpacked. The next day, I walked a kilometer to shop for the household. Spent most of the day there and just enjoyed the weather and took my time, with latte breaks in between. Yesterday morning it did hit though and it was necessary for me to go home from where I was yesterday morning and sleep the afternoon away. I did go to the Southland Leisure Centre today for the whole morning, but needed a nap at 2 pm. All considering, that’s not bad. I think I’ll be seeing my brother when I can afford it.

August 1: I have avoided night time activities like the plague because of fatigue, but I am attending night time events and I am taking phone calls and making sense. I have made it a habit to have people call me earlier in the day, because with fatigue comes a deeper fog. I don’t have any problem with my thinking at any other time of the day. I am as sharp at night as I am in the morning. I went out last night for a meeting, got at 5:30 this morning for exercise and I am going tonight too and I have a doctors appointment morning that I am not the least bit concerned about. Amazing.

September 1: Physical damage I have does still get fatigued at the end of use, like walking a kilometer, I’m dragging my leg the last ten minutes and it takes me 45 minutes to walk it. However, that’s better than not a all, which was the case five months ago. I am energetic again. But, I need to take naps now to compensate for that. I am sleeping on average 7 hours a night with an hour nap in the afternoon. The sleep is good and restful.

October 2: My stamina is increasing more and more. But, I do need to continue to respect fatigue a.k.a. my continued limitations. Being a go getter, my instinct is to make all happen right now. I have to hold myself back lest I ruin everything I’ve worked for up to this point.

November 1: My walking is ever stronger, however when my leg fatigues is the same. But, I can walk that kilometer in 20 minutes with a five minute rest now, but then I need to sit for 30 minutes, same as always. Sometimes, I am moving my leg without the limp. That’s incredible. I do get tired after a lot of activity. This is where I don’t know if it will be possible for me to work 35 or more hours a week. This will need to improve. Which may still happen. I can type for an hour before my spine starts to burn (electrical numbness), I can walk strong and fast before my leg weakens, I can do a couple of days of busy activity, then must crash for a day and sleep extra.

Eye intolerance of sun:

August 1: I had a symptom removed I hadn’t considered. I wear prescription glasses that have transitions built into them. They darken when you step out into the sun. I began wearing them because of losing my glasses left and right as would change them out. This started became a problem after the cognitive damage sustained from the 2008-2009 attack. Transitions solved this problem. The other damage that happened as a result of that attack was a heightened sensitivity to light. My eyes couldn’t stand it, painful almost. Because of my prescription glasses which I wear constantly, I hadn’t noticed anything different. Well, I broke my prescription glasses in half about a week ago and having no sun glasses had to go the optometrist without them on a bright sunny day. When it dawned me that they were better in this respect was when I got off the bus and walked into the mall with the mid morning sun facing directly before me and it didn’t bother me in the least. I had a happy dance! I will still get transitions, because there handy, but its nice to know that I don’t need to obsessively shield them. I haven’t replaced my glasses yet, I bought a cheap pair of three way vision glasses at Shopper’s Drug Mart and it never occurred to me to buy a pair of sun glasses, because it just isn’t bothering me to go without them.

October 2: Got my new prescription glasses a week ago, finally. These have a lighter brown transition in them then my former grey for bright light. But, I’m good.

Wahls Paleo Plus Level III – Nutritional Ketosis:  I began roughly a week and a half ago. I am in Ketosis now. This required me to cut down on my meat and cut back veggies back from 9 cups to 6, fruit restricted to one cup of berries a day. I cut back to much on my food and went into “The Ketosis Flu” which is a result of not enough electrolytes. In particular it is Potassium, Sodium and Magnesium that take a hit on this diet. I increased my food, particularly fish, almonds, avocados, salt and darkest chocolate and it pulled me out of the flu while keeping me in Ketosis. I rebounded though in that I was eating too much food. I lost four pounds fast, than put two pounds back on. So, I have been practicing various adjustments till I get the formula (for me) right. Takes patience. The flu scared me, I consulted the Wahls ketosis group about this and had all my fears and questions adequately answered. Aside from working out the food amounts I am on track now.

August 1: I’ve had dramatic improvements in thinking, balance, energy and walking ability since I started this and I do believe it has everything to do with this level and being in ketosis. Its been an adjustment as stated above, but also because of eating schedules. In brief, I fast for 16 hours and having an eating period of 8 hours with only two meals in that period, one at the beginning and one at the end of the 8 hours. It gives my body hours of time in the bigger fast to get to work healing without the constant need to be doing the work of digestion. And, it works. There is more going on here than that, I suggest to purchase Dr. Wahls book which is can be had cheap on Amazon and read about it.

September 1: I mentioned lots about this under other symptoms for September 1st.

October 2: I had a rough month in terms of staying in Ketosis. I did successfully maintain it for six weeks or so. No problem. However, I had more on my plate than I could manage, as stated above a number of times. I got kicked out of Ketosis three times, I am back on track, readjusted and feeling the speedies (brain getting its kick start that comes with this). This will, I have no doubt, calm down again.

November 1: I have had great success along with some troubles with this level. The success strength I am gaining in my walking and thinking. The troubles have been balance. I experienced sleepiness and depression. I finally pinpointed the problem to not enough fat and protein. After research I found a good article that explained side effects on a Ketosis diet and the possible cause. There they were, sleepiness and depression. I increased my protein and fat that day and within 24 hours the depression and sleepiness were lifted. So, that was it. This diet is most definitely a balancing act. And each person will have a different balance. At its core it is a definite methodology, however from there one must tweak according to one’s own chemical makeup. Here is where we are all different.

Carpal Tunnel: 

It is August 30 and I am having the first of two carpal tunnel surgeries on my wrist tomorrow morning, beginning with my right wrist (dominate hand). I have had a problem with this since 1998. I was scheduled for surgery on the right hand in 2008, but was too sick to handle the added stress and cancelled. So, like leaky pipes, they don’t get better. Especially, I-phones, computer mouses, typing, making beadwork, and four years of putting my weight on my right hand using a cane. I am considered severe now. However, some of the damage I have is from neurological reasons. The doctor says, “After the surgery, what is left is either MS or damage from your neck (stenosis). Wish me luck!

October 2: I had the surgery done on my right wrist to great success. But, it did knock me for a loop fatigue wise and screw up my organized momentum on the Wahls protocol. I made the decision to not do the second surgery on my left wrist. It is my non dominate hand and so, I feel it can wait.

November 1: I have decided that it is stupid to not have the left done. The Carpal Tunnel surgeon gave me a year to have it done. I will do it sometime in the next four months. Maybe plan for January, or maybe get it over with now. Nah, January, or maybe February, no June………Okay, January.