Category: Cerebellar Atropy

Coping With Life When You Are Disabled.

Copying With life When You Are Disabled.

I have this methology “if life gives you lemons, make lemonade”. I am not the type of person to whinge and moan, I just make the most of what I have and try to get on with it.

I always keep myself busy and set goals. However my physical and mental disabilities are obstacles that daily I have to get round.

My OCD is by far one of my prominent disabilities and have designed a quarantined cocoon area where only I have access to. This area allows me to be free of any anxieties that I would have in the normal environment. I have adopted this practice to save cleaning my whole home from top to bottom day in and day out. Believe me I used to clean from top to bottom every single day until I realised I was wasting valuable time doing something else.

Keeping myself busy does help to block out intrusive thoughts to a certain degree. I am the worlds worse for critising myself. I try to brain train to reason with myself that what I do is ridiculous and out of character to normal people, but it all is related to stress, anxiety and depression. Depending how stress I am under will depend how well my day will be. If I am super stressed, I find that I cannot concentrate and even do minuscule tasks.

My OCD is germ contamination related and I am even more conscious of my surrounding and the things that I touch. I dislike people visting me and visa versa. I prefer not to go out, hence I am not going out any time soon pandemic regulations or not.

I actually wrote an article on my other blog about germ awareness and cross contamination: https://marketingagency.cymrumarketing.com/2021/02/16/saliva-and-mail-cross-contamination-of-germs/

As for my other disabilities:

  • Cerebellar Atrophy (I lose my balance or grip and muddle my words up especially when I write, I also have mental blocks).
  • OCD (I am aware of germ cross contimination and and am careful what I touch).
  • Social Disconnection (I prefer my own company and not go out and socialise, although we can’t anyway but you get my drift).
  • PTSD (I have flashbacks of the physical and mental trauma I endured in the past and certain things trigger my depression).
  • Clinical Depression (This is related to past physical and mental trauma I endured, in which there are days where I go to a dark place).
  • Rheumatoid Arthritis (I cannot bend my knee, again from past physical trauma/abuse).
  • Dysphagia (I sometimes choke of food, I get a painful feeling followed by trouble swallowing and breathing and only when the food is dislodged does the feeling subside, gross I know but what can I do? I have been told I could have surgery but there is no gauarantee that it would work. I am not going to go under the knife for anything, I can tell you that for sure).
  • Epidural Analgesia (Chronic Back Pain, even bending down to feed the cat makes my back spasm, the same goes if I am standing for excessive length of time I have shooting pains from the small of my back to the nape of my neck. Simple taskes like taking out the rubbish or bringing in the grocery shopping has brought tears to my eyes in the past).

So yes I have good days and bad days but I do not dwell on my ailments and try to live the best way I can. I adapt to around my disabilities. Fortuantely for me I offer digital services so I can do 100% of my work online and do not have to venture out.

Stress and worry are contributing factors to my OCD, PTSD, Depression and Social Disconnection.

  • Getting headaches (I have regular headaches)
  • Having stomach cramps (I have a bad stomach most days, but that can be from drinking energy drinks to keep me awake).
  • Not being able to sleep (I find my medication helps me sleep but it takes a few hours for me to wind down, hence I watch a film or play a game, I also read books from time to time).
  • Feeling pains in your chest (I do not get them often but when I do it is scary as I have also experienced jaw ache and shooting pain down my left arm in the past). I have had an ecg scan done and the doctor said there was nothing wrong, yet the same doctor also prescribed antacid ‘Gaviscon’ to my daughter even though she was later diagnosed with MS after I admitted her into A&E.
  • Having constant worring (If I do not keep myself busy I do worry hence I try to keep my mind occupied all the time). Worrying only makes your health deteriorate and although life struggles can get in the way of your happiness, one needs to find a way to tackle the problem we are faced with, rather than sweep them under the carpet. Confronting your inner demons makes you stronger. Sometimes simply writing down your problems is the first step to dealing with whatever is on your mind. Talking to a friend or family member also helps but for me expessing my emotions in the form of a blog is theraputic in itself.
  • Having panic attacks (I only get these if I have to meet negative people). People that judge or critise, you know the people I am talking about or if I have a deadline in work or something that I have seen or heard that has triggered the onset of sheer panic. However for most part I am organised and know to how to avoid trigger warnings, so panic attacks are subdued.
  • Feeling shortness of breath, (I only get this if I cannot swallow due to my Dysphagia or at times when I have in the past been in distress, due to the trauma and abuse I endured).
  • Having mood swings with friends or family (I avoid socialising so no one knows my moods and no one can be on the tail end if I do have a bad day).
  • Finding it hard to feel happy (Continuously reassuring myself and staying positive that what I am doing will eventually change my life for the better, is enough to motivate me to get up and tackle every day tasks).

Although I was going to do a daily/weekly journal of my health, I am not able to do so at present as I have many projects I am working on and simply do not have the time, but I always try to strive to stay focused and optimistic that tomorrow will be a better day.

Obviously adopting a healthy lifestyle can help with coping with life struggles, such as:

  • Regular Exercise
  • Breathing Exercise
  • Meditation
  • Eating Healthily
  • Brain Training
  • Learning New Things
  • Staying Focused
  • Being Organised
  • Setting Goals
  • Time Management
  • Avoiding Negative People
  • Learning to Trust People
  • Motivation
  • Talking to Family and Friends About Your Troubles
  • Discussing your Problems with Professionals, Health, Finance, Relationships etc

Final Thoughts!

I am a disabled entrepreneur and I have created a business round my disabilities. The way I saw it when I first started out, I would not fit in or be accepted in a normal working enviroment and I am the most happiest I have ever been for a long time doing what I do and it works for me. So the way I see it is my disabilities are a blessing in disguise, as I would not be where I am today without them.

I avoid negative judgemental people especially if they have power trips (Trolls especially that have nothing better to do than try an bring a person down, these get immediately blocked).

As for me I will help anyone that genuinely needs my help. I am very good at analysing people and situations and I am very astute.

Stay safe, stay focused and stay motivated, nothing stays the same forever unless you let it…

What is Multiple Sclerosis (MS).

Amongst my knowledge of OCD and Cerebellar Atrophy I have been thrown into the deep end with Multiple Sclerosis. The reason for this, my daughter was diagonosed with it at the age of 15. It was a shock to the system for the both of us to learn about the disease, the diagnosis and what treatments there were and what are available.

At the time my daugher was put on Lemtrada (alemtuzumab).

I had concerns when I read that the treatment was still going ahead even though European Medicine Agency (EMA) had taken it off the market. The hospital and EMA said that no new patients would be having to drug but the patients already on it would have to finish the course.

RED TAPE!

I personally think there was political red tape and that is the reason the drug had to be continued with existing patients as it cost too complicated to get a refund, I may be wrong but no one has stepped up to correct me.

https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada

Lemtrada suppresses the immune system for some time after a treatment course so people will be more vulnerable to infections such as colds and viruses.

LEMTRADA can cause serious side effects including:

Serious autoimmune problems:

Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death.

Serious autoimmune problems may include:

  • Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems.
  • Call your healthcare provider (HCP) right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
  • Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
  • Call your HCP right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood.

So its no suprise that On July 3, 2020 Sanofi Genzyme was notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.

https://www.lemtrada.com/

Because of this, unfortunately, all future Lemtrada Home Phlebotomy (lab draw) visits from EMSI have been cancelled.

Patient safety is Sanofi Genzyme’s #1 priority (thats a joke if I ever heard one as my daughter was still administerd the drug after the EMA said it was unsafe) and they continued to say they are working to provide an alternative phlebotomy solution as well as coordinate alternative testing options for your next monthly lab tests.

This tells me that the company had to do refunds and the NHS here in the UK were slow and had already paid the doctors.

I wrote an article on my other blog how Doctors get a commission from pharmaceutical companies for promoting drugs.

You can read the article here:

https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/

Doctors receiving money from pharmaceutical companies.

https://www.telegraph.co.uk/news/2016/06/30/individual-nhs-doctors-receiving-100000-per-year-from-drugs-firm/

I personally think when I first learnt about this that I was angry that the NHS knew the risk, yet used my daughter as a lab rat.

If you have any questions related to this announcement, please contact your healthcare provider or your One to One Nurse at (USA) 1-855-557-2483.

If you are in the UK contact your MS Team, or speak to the Ward Manager or Professor assigned to your case.

Multiple sclerosis (MS)

Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild.

The average life expectancy is slightly reduced for people with MS and symptons can be alliviated with different courses of treatments.

In most cases people get diagnosed in their 20s or 30s but it has been know the patients have showed symptoms as young as 15 years old. In fact it can develop at any age. It’s about 2 to 3 times more common in women than men.

MS is one of the most common causes of disability in younger adults.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The most common symptoms include:

Cerebellar atrophy

Cerebellar atrophy is associated with MS and is more extensive in patients with secondary progressive MS and those with longer disease duration when compared with people who have relapsing–remitting (RR) MS and/or shorter disease duration. Cerebellar atrophy has been shown to correlate with clinical measures of disability.

Multiple sclerosis (MS) commonly affects the cerebellum causing acute and chronic symptoms. Cerebellar signs contribute significantly to clinical disability, and symptoms such as tremor, ataxia, and dysarthria are particularly difficult to treat.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281565/

For Further Information Contact the Following Links.

https://www.nhs.uk/conditions/multiple-sclerosis/

https://www.nationalmssociety.org/What-is-MS

https://www.mssociety.org.uk/

https://www.webmd.com/multiple-sclerosis/default.htm

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487391/

https://jnnp.bmj.com/content/88/12/1065

https://journals.physiology.org/doi/full/10.1152/jn.00245.2018

Dysphagia.

Dysphagia is the medical term for problems with swallowing food and drink.

Some people find it difficult to swallow certain foods or liquids, while others can’t swallow at all, other side effects include: coughing or choking when eating or drinking. bringing food back up, sometimes through the nose.

I know this may sound horrifying or even disgusting but on and off depending what food I eat and if I have taken small bites will determine if I do not have the feeling I am chocking and that food is stuck and won’t go up or down. This usually occurs if the food is dry and if I have taken large bites. Normally I have to chew my food like a cow chewing grass. Eventually it gets monotinus and I loose the enjoyment of the food I eat. If only there was a pill form where you could choose your meat and veg and have the taste and nutrician plus the feeling you have had a slap up meal all in one.

In fact In 1936 the Jefferson City Post-Tribune ran an article recounting the views of Dr Milton A Bridges of Columbia University. In it, he declared: “Human beings are never going to eat pills for meals” (why not? I would try it for certain) he went on to say “pills can never be made to contain sufficient caloric volume”.

Reading this I would find this would be an idyllic solution to my problem, popping a pill saving time sourcing the produce, cooking and then chewing, not to mention loosing weight in the process with the low calorie count, how wonderful that would be. Imagine your gas or electric energy bill would also drop in the process. But this is not an ideal world and Government and the Economy would be effected hence it is never going to happen, not in my life time anyway. This would also solve world hunger but one would need to have calories as our bodies need on average of 2000 calories per pay so we would have to pop around 400 pills per day just for calories alone. (My theory if that was the case would be to crush them and mix them up as a smoothy formula).

To think how many hours we waste shopping for groceries, packing and unpacking, preparing and cooking and then sitting and eating for me I could be doing something else as time is precious. Imagine how much packaging we could eliminate from our lives whilst saving the planet in the process.

What is the likely cause of the dysphagia?

Certain disorders such as multiple sclerosis, muscular dystrophy and Parkinson’s disease can cause dysphagia. Neurological damage. Sudden neurological damage, such as from a stroke or brain or spinal cord injury, can affect your ability to swallow.

I wonder if this may be linked to Cerebellar Atrophy & Epidural Analgesia? I am not an expert but it seems a bit of a coincidence that I have the above ailments and find it diffucult to swallow at times.

How to Treat Dysphagia includes:

  1. Exercises your swallowing muscles.
  2. Evaluate your Diet and perhaps change the foods you eat. (Don’t know if there is a recipe for a full english breakfast smoothy).
  3. Dilation.
  4. Endoscopy. ( I had this proceedure done they made me swallow barium and then they stuck a camera down my throat), besides this is for diagnosis purposes and not for ment as a cure.
  5. Surgery. (Not guaranteed to be a successful and you may have to repeated surgeries).
  6. Medicines. ( I have been prescribed Gaviscon Advanced Mint tablets, as I suffer with acid reflux which is also associated Dysphagia.

Further reading can be found here:

https://www.nhs.uk/conditions/swallowing-problems-dysphagia/